= The Accidental Caregiver’s Guide

== Preface

image::https://i.nostr.build/UWuxZjxQkeSRjyCU.png[cover page, 300]

[.lead]
The Toolkit For Navigating The Healthcare System And Aging In Place

WINN MERWIN PT, DPT

*The Accidental Caregiver’s Guide: The Toolkit For Navigating The Healthcare System And Aging In Place*

© Copyright 2024 Winn Merwin

== Rules for Use

All rights reserved. No part of this publication may be reproduced, distributed or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the publisher, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law.

Although the author and publisher have made every effort to ensure that the information in this book was correct at press time, the author and publisher do not assume and hereby disclaim any liability to any party for any loss, damage, or disruption caused by errors or omissions, whether such errors or omissions result from negligence, accident, or any other cause.

Adherence to all applicable laws and regulations, including international, federal, state and local governing professional licensing, business practices, advertising, and all other aspects of doing business in the US, Canada or any other jurisdiction is the sole responsibility of the reader and consumer.

Neither the author nor the publisher assumes any responsibility or liability whatsoever on behalf of the consumer or reader of this material. Any perceived slight of any individual or organization is purely unintentional.

The resources in this book are provided for informational purposes only and should not be used to replace the specialized training and professional judgment of a healthcare or mental healthcare professional.

Neither the author nor the publisher can be held responsible for the use of the information provided within this book. Please always consult a trained professional before making any decision regarding treatment of yourself or others.

For more information, https://www.KeepMomSafeAtHome.com

ISBN: (print only)

NOTE: This book has been formatted and published for Nostr, with the expressed permission of the author. -- The editor.

== Get Your Free Gift!

To get the best experience with this book, I’ve found readers who download and use _The Accidental Caregiver’s Guide Workbook_ are able to implement faster and take the next steps needed to help their loved one navigate the medical system and get back home to safely age in place. They see improved quality of life with reduced stress for themselves and their loved one.

image::https://i.nostr.build/npUxzYB1re8zjszs.png[free workbook, 300]

[INFO]
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You can get a copy by visiting: https://www.KeepMomSafeAtHome.com/workbook
====

== Dedications

I would like to dedicate this book to the following people:

Kaitlin, you are my rock. I love you. Your strength and ability continue to amaze and inspire me every single day. You are the reason this book has become a reality. Your ability to push me to be better is something I could not do without. I know it seems like I chose the worst time to add one more thing, writing a book, to our plates. Thank you for all you do for us. You are appreciated. Mom, I know you will never see this, but I feel compelled to write it nonetheless. I miss you every day. The way you lived remains an inspiration to me. Your selflessness and care for others is humbling and something I will always fall short of. Thank you for all you have done for me and our family throughout your life. Your life continues to impact those who were blessed enough to know you.

To the Merwin, Boykin, Adkins, Truono, Cassidey, McClure, and Holmes families: thank you all. Thank you for your love and support. Thank you for caring for our elderly loved ones. To have had five of eight grandparents and grandparents-in-law healthy and living at home into their late eighties and mid nineties is a testament to all the love, care, and support you have provided. Thank you for caring for our elderly and demonstrating the purpose of strong family ties. I love you all.

== Foreword

In _The Accidental Caregiver’s Guide_, Winn shares his experience and knowledge in a format that you can use as a roadmap for success. His years of work as a physical therapist coupled with his personal journey during his mother’s illness blend into a very helpful guide for families. As a physician and a daughter, I have also recently lived the experience of keeping my mother in her home during a terminal illness. I agree with his guidance wholeheartedly, and you too will be thankful for this book. It is full of practical guidelines and solutions to common concerns that will come up as you strive to provide your loved ones with the very best care possible.

[%hardbreaks]
_Pamela B. Salazar, MD_
Augusta Rehabilitation Associates
Augusta, GA

== Contents

NOTE: The main contents of the book are in the following order. Page numbers may not correspond to actual locations, depending upon the formatting. -- The editor.

[%hardbreaks]
Foreword 7
Introduction 11

[%hardbreaks]
*Part I: The Hospital and Rehabilitation 15*
Chapter 1: Navigating Healthcare: Mom Is Headed to the Hospital, Now What? 17
Chapter 2: Discharge Planning 25
Chapter 3: Preparing for Your Loved One’s Transition Home 37

[%hardbreaks]
*Part II: At Home 49*
Chapter 4: Empowering Your Loved Ones to Age in Place Safely 51
Chapter 5: The Age-Friendly Home 63
Chapter 6: Promoting a Healthy Lifestyle for Aging in Place 78
Chapter 7: Getting the Right Help at the Right Time 93
Chapter 8: The Essential Guide to Caregiver Self-Care 105
Chapter 9: Aging in Place and Family Dynamics 117

[%hardbreaks]
*Part III: Leaving Home 127*
Chapter 10: When Aging in Place Is No Longer an Option 129
Chapter 11: A Caregiver’s Guide to Death and Dying 145

[%hardbreaks]
Conclusion: Embracing the Journey 157
Acknowledgments 159
Author Bio 161
Book Blurb 163

== Introduction

Welcome to a journey of transformation and peace of mind with _The Accidental Caregiver’s Guide: The Toolkit for Navigating the Healthcare System and Aging in Place_. If the weight of caring for an aging loved one has landed unexpectedly on your shoulders, you’re not alone. This book is your roadmap through the often bewildering world of caregiving, guiding you from a place of worry and stress to a state of assurance and peace.

You’re about to embark on a path that will illuminate the caregiving journey in its entirety. From the initial realization that your loved one needs assistance, to the intricate processes of navigating the healthcare system and creating a safe, comfortable aging-in-place environment, this guide is your compass. Every chapter, every page, is a step toward ensuring your loved one’s well-being while preserving your own peace of mind.

Why trust this journey with me? As a Doctor of Physical Therapy with over a decade of experience in various settings of geriatric care, I bring a wealth of professional knowledge. But more than that, I bring personal experience. I’ve been where you are: I’ve navigated the emotional and practical challenges of caring for my own mother and advised numerous families on how to help their loved ones age in place gracefully. This book distills that rich experience into practical, actionable steps.

The benefits of this book are tangible and immediate. Not only will it equip you to provide the best care for your loved one, but it will also help you save substantially by delaying or avoiding the need for expensive skilled nursing care. I promise you—with the strategies in this book, you could save over $58,000 and extend your loved one’s time at home by a year or more. This isn’t just about financial savings; it’s about enriching the quality time you have with your loved one.

But there’s an even greater benefit, a hidden gem, if you will.

By walking this path of caregiving, you gain invaluable insights and experiences that can enhance your own life. The techniques and understanding you acquire don’t just apply to your loved one; they’re lessons in how to live a fuller, healthier life yourself.

This book is as much about improving your future as it is about improving your loved one’s present.

Every day that passes is a missed opportunity to make a positive change. The cost of waiting is high—both in financial terms and in the quality of life for your loved one. _The Accidental Caregiver’s Guide_ offers you the chance to take control now, to make informed, compassionate decisions that benefit everyone involved.

In these pages, you’ll find not just a guide, but a source of comfort. Many people have walked this path and found solace and success in these methods. You are invited to join us and move towards this community of people traveling the same path.

My story and experience look like this: My mom died of cancer at sixty years old. She was a nurse and the most selfless person I have ever encountered. She worked full-time while shepherding a husband and two boys through this crazy world. She and my father had lived a relatively typical life of a couple born in the 1950s. Strong family values, hard work, raise a family... retire and relax, travel and enjoy life. Well, as you can guess by the way this story began, that didn’t happen.

I was blessed to be able to help my dad and brother care for my mother during the last eight weeks of her life. It is so difficult and painful to watch cancer eat away the strongest and most beautiful person you have ever known. Maybe you know what I am talking about, but I hope you never have to experience that. Or maybe you should, because it certainly changed my perspective.

Life is to be lived. Not that she didn’t live fully, because she did.

Nothing made her happier than taking care of her family and her patients. But the _one-day_ things need to happen now. My mom and dad were going to travel when they didn’t need to work anymore. That opportunity never came for them. But it has given me the chance to do things a little differently. To travel a bit and enjoy the world while I still have the health to do so.

I hope that in your journey of caring for your loved ones, you find a few positive takeaways that make your life better. You tend to find what you are looking for, so focus on those. Life and caregiving are hard enough without focusing on the negative. Try to find the bright side of this journey, and maybe the world will be a slightly better place because of it.

Don’t let another day slip by in uncertainty and stress. Open this book, and take the first step toward becoming a confident, compassionate caregiver and an empowered individual ready for the future.

== PART I: THE HOSPITAL AND REHABILITATION

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== Chapter 1: Navigating Healthcare

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Mom Is Headed to the Hospital, Now What?

In this chapter, we look into an experience that many of us may encounter: the sudden and jarring transition from our daily routines to the role of a caregiver for an ailing family member. Through a brief story, we will see the whirlwind of emotions, the sudden responsibilities, and the crucial decisions that arise following a health crisis of a loved one. By offering insights both from a professional and personal perspective, this chapter seeks to provide clarity on the first steps to take, questions to ask, and other considerations when navigating the complicated healthcare system.

Your phone rings; it is a number you don’t recognize so you ignore it and go back to making dinner for the family. Tonight is spaghetti night and everyone loves spaghetti. The phone rings again, and it is the same number. _That’s odd_, you think, so you pick it up. _Hello?_

_Hello, this is Joe with Jackson County Emergency Services. We responded to a 911 call at Jack’s diner and... well, we have your mom and are on the way to Northeast Georgia Hospital in Braselton. Apparently, your mother tripped stepping down the curb, fell, and hit her head. She’s currently unconscious. I am sorry to be the bearer of bad news._

You mumble some sort of response and freeze as understanding sinks in. Panic ensues. You’re unsure what to do next. The seconds feel like an eternity...

Your child brings you back to reality and you realize dinner will have to wait. _Mom... Mom! What’s wrong? Who was that on the phone?_ You quickly explain what happened to the kids and call the neighbor to see if they can come hang out for a while until their father gets home. Once the kids are safe, you rush to the hospital to find your mom on a stretcher being wheeled down the hall for scans as she is still unconscious.

You start praying, _Please, God, don’t let it end like this..._ It seems like hours pass; someone comes and finds you, and you are taken down the hall to what will be your mother’s room. She is not there, but you are told she will be admitted while determining the next course of action. The nurse on this unit comes by and introduces herself. She is pleasant and understands your concern but has no news, other than her vitals are stable.

She was so healthy, what happened? She loves meeting her friends at the diner on Tuesdays for their _Laughing Ladies dinners._ She usually drives and picks up her friends who are no longer able to drive.

The waiting continues. Praying too. Then your mind turns to everything left undone, the half-cooked meal. Did he pick up the kids? I better call and check on them. Will I be able to make it to work tomorrow? I need to let my boss know about the situation. Where did I park? Am I going to spend the night here? I don’t have a toothbrush or a change of clothes...

The concerns are endless.  What time is it? You glance at the clock and notice it is 1:15 a.m. The on-call neurologist makes it up to the room. He lets you know that your mom had an aneurysm. A brain bleed. There appears to be some damage to the right side of your mother’s brain. It is unsure how much at this time. The swelling is making the imaging difficult to read. She is going to be kept unconscious by inducing a coma if needed for a few days. The ruptured blood vessel likely caused the fall and not the other way around. No broken bones, but significant bruising.

What does that mean? Thank God she didn’t break a hip, but will her brain be okay? What will she be like when she wakes up, if she wakes up? _No, don’t think about that now._ Exhausted, you fall asleep sitting up in the chair in the hospital room.

Does this story sound familiar? Unfortunately, this scenario or a similar one happens every day. It could be your dad and not your mom. It could be a broken hip and not a brain bleed. You may be retired from work but taking care of your grandchildren.

We, as children, tend to assume everything is okay and normal with our parents and their health until we get slapped in the face with a crisis. The point is, millions of people every year find themselves unexpectedly thrust into this situation due to an accident or health problem of their previously independent parents.

It is a very challenging situation for hundreds of reasons but mostly because of the unknown. What happens next? How does the healthcare system work? Who is going to pay for this? These are good questions without easy answers. Often, we have to learn the process of navigating the healthcare system and becoming caregivers by experience. Hopefully you can learn some of the difficult aspects from someone else’s experience. Someone who has been through this process on both sides. Someone who has been a caregiver for family and as a physical therapist caring for those in need of rehabilitation.

That happens to be me. I have been a Doctor of Physical Therapy (DPT) for over a decade and have devoted my career to caring for the elderly and educating the primary caregivers of the elderly. That’s you! I have been writing the weekly blog Keep Mom Safe at Home since 2020. I was also the primary caregiver for my mom during her last eight weeks of life after it became obvious we were headed for the end. My father was burned out after being her caregiver for over a year as she slowly died from uterine cancer.

I owe a lot of thanks to my former boss and close friend Aaron Hasten for supporting me during that time away from work. While I was away from my day job, caregiving is definitely work. Hopefully, you will find caregiving to be as rewarding as I did.

My mother spent so much time and energy on me, caring for her was a special opportunity that I wouldn’t trade for the world. That doesn’t mean it is or was easy, but there are definitely lots of memories and shared experiences I took away from that time.

I have also been fortunate enough to help my grandparents age in place for as long as safely possible. My role with my grandparents has been much smaller as the distance between us has made hands-on caregiving impossible much of the time. But my mother’s parents lived safely at home together until they were ninety. My uncle, aunt, and cousins played a huge role in their ability to safely age in place. My grandmother on my father’s side lived by herself for many years, but eventually, it became less safe for her to remain at home alone. Many months of discussions were required before relenting and moving into an independent living facility. My uncle was and still is her primary caregiver. She was very fortunate to have him close by and willing and able to assist.

My wife had one grandparent on each side who survived their spouse. They were able to safely remain at home, aging in place until their early and late nineties. Their children were their primary caregivers, but I was able to give some recommendations along the way.

So all that to say, here we are. You have found yourself thrust into the role of caregiver, or your role as caregiver has become more involved. Your loved one is in the hospital. What should you do next?

Read this book! Yes, that is the next step.

While your parent is in the hospital, you need to gather as much information as you can. Start by introducing yourself to the on-duty staff. You can start to build relationships and will recognize familiar faces from day to day as staff members and their shifts change.

Next, write down a list of questions for the healthcare providers.

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A sample of a few questions that may be important can be found in the _Chapter 1 Bonus Content_ of the free workbook you can download at https://www.KeepMomSafeAtHome.com/workbook.
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Review that list, add to it, make it your own. Ask a couple questions of each provider you interact with, but understand that they are busy. Keep the questions as short and direct as possible. Refer back to the previous list for a look at the way to phrase good questions for the medical team.

Next, talk to a friend or family member who works in healthcare.

They will be able to give you ideas of which questions to ask which staff members. If you don’t know anyone in the medical field, there are lots of caregiver groups on Facebook. Join one and ask the group. There are often people who will provide a thoughtful response to your question.

Next, keep a notebook or a note app on your phone handy.

Write down the provider’s responses. Don’t be rude and slow down their answers to write them word for word, but quickly repeat back what you understood from their answer. Then write it down after the conversation is complete. Pay careful attention to when they give you another person to ask that question to, e.g., _Maybe save that one for the doctor_ or _That would be good to ask social services._

Here are some examples:

* *Ask the MD* questions about diagnosis, prognosis, or changes in medications.
* *Ask the nurse* about what medications your loved one is on and what they are for.
* *Ask the social worker* questions about discharge planning and location. As well as resources within the community that may be helpful.
* *Ask the therapists* about mobility, function, and recovery.

At this time, it is important to understand that there are many potential outcomes during this trip to the hospital. Anything from a quick and full recovery to a long, drawn-out hospital stay and transition to other facilities is possible. Your loved one may never return fully to their prior level of function. There is little benefit in getting lost in all the possibilities. Especially avoid dwelling on potential negative outcomes. But know that every situation is different and there is no exact road map to follow.

[.lead]
Most Important Next Steps

1. *Hospital Arrival:* Once you arrive at the hospital, introduce yourself to the on-duty staff. This will improve communication later.
2. *Seek External Support:* It’s essential not to navigate this journey alone.
a. Connect with friends or family in the healthcare sector for guidance.
b. Join caregiver support groups, especially on platforms like Facebook, to share experiences, seek advice, and gain insights from others in similar situations.
3. *Effective Communication with Medical Professionals:* When interacting with healthcare providers, have a short list of pertinent questions ready. Distribute questions based on their specialization as suggested above.
4. *Documentation:* Keep a notebook, pad, or note app handy. Document medical updates, medications prescribed, and any advice or recommendations given. This will help in keeping track of the care process and for future reference.
5. *Prepare for Potential Outcomes:* Understand that the recovery process can vary widely from person to person. Prepare emotionally for potential scenarios, whether that involves significant recovery or more intensive caregiving responsibilities.

We return to our story at the beginning of the chapter.

It can go one of two ways:

Great news! After a few days in the hospital, she’s awake and alert. She is having little difficulty talking and swallowing. She is able to get out of bed with very little help and walk down the hall with supervision. She needs a little help with dressing and bathing, but she appears on the way back to her _normal self._ 

or 

A few days have passed, and your loved one is recovering. She is more alert for periods of time but clearly very fatigued as well. She can nod to respond to yes/no questions, but her speech is difficult and garbled. Therapy has come to visit and has helped her sit up in the recliner for a couple hours at a time, but she is not doing much else. Maybe walking short distances with two-person assistance. She needs help to get on and off the commode as well as someone to dress her. 

Either scenario is possible, along with infinite other possibilities, but what happens next happens quickly. Discharge! 

In Chapter 2, _Discharge Planning_, we will cover the following questions: What does discharge entail? What preparations need to be made? How does one ensure a smooth transition to the next phase of care? The next chapter provides guidance on ensuring a safe and well-prepared return home or transition to the next phase of care.

== Chapter 2: Discharge Planning

In this chapter, we jump right into the crucial phase of discharge planning. While the medical team tirelessly works behind the scenes, it often feels like a whirlwind of decisions once discharge is imminent. We’ll navigate through potential discharge destinations, the challenges of understanding and questioning the discharge plan, and setting expectations for a rehab stay.

Your role as a caregiver is pivotal in this transition, and this guide aims to make that journey smoother for both you and your loved one. The medical team and hospital staff will begin discharge planning on the first day your loved one is in the hospital.

It begins with the gathering of information. Diagnosis, prognosis, age, medical history, and prior level of function will all play a role in expected discharge scenarios. You will likely not know that the planning is going on until the most appropriate transition to the next level of care is determined. This will be based on your loved one’s medical condition, recovery, and expected continued progress. Discharge has been discussed all along by social workers, the medical team and therapy team, but when the time actually comes, it feels like it happens fast. The process is geared toward getting people home as safely as possible with adequate support.

If you have been at the hospital consistently throughout this process, it will likely be assumed that you are available and capable of assisting your loved one at home. With some nursing and therapy support, of course. But even with the help, it is likely more family or additional paid caregivers will be required for some a while. It may be a challenge to get your loved one back to managing on their own day to day without additional help. That is, if they are doing well enough and have enough support to go home safely. Let’s take a look at possible destinations for discharge from the hospital.

* *Back Home:* This is the ideal scenario where Mom returns home safely and almost fully recovered. She will have some light nursing assistance and therapy services a few times a week for thirty to forty-five minutes. Additionally, help from rotating family members or paid caregivers can make this setting a good option for your loved one if they are almost back to their prior level of function.
* *Family Member’s Home:* Mom needs more support but has adequate family and financial resources to provide around-the-clock care. Again, some light nursing assistance and therapy services a few times a week for thirty to forty-five minutes can be provided by home healthcare.
* *Inpatient Rehab Facility (IRF):* In this setting, extensive assistance is required. They will receive daily supervision by multiple doctors of differing specialties. Also, there is a minimum of three hours of therapy per day split between physical, occupational, and speech disciplines. Due to the nature of care, this setting is very expensive and most stays last one to two weeks before transitioning home. This is high-intensity rehab to maximize results in the least amount of time possible.
* *Skilled Nursing Facility(SNF)/Short-Term or SubAcute Rehab:* This setting is often used as a bridge between the hospital and home. It is for those patients who are not so medically complex that they need three hours of therapy per day; therefore, it is not as intense. Typical stays last from weeks to three months, depending on the patient’s needs and ability to return home safely. Physical, occupational, and speech therapy are provided based on need for fifteen minutes to an hour, five days per week per discipline. Most patients receive one to two total hours of therapy per day.
* *Long-Term Care:* This setting is for those who came from long-term care or are no longer safe to return home and will be requiring nursing care for the foreseeable future.
* *Hospice:* This is only an option if the medical condition is quickly declining and it looks as though your loved one will not be with you for more than six months. This is end-of-life comfort care. We’ll discuss this more in Chapter 11. 

If you are unable to provide the assistance required for your loved one, there is no other family to help, or they need more care than can be provided at home, discharge to a rehab facility is likely the best option.

[.lead]
Who Do I Ask?

Ask the nursing staff who you should speak to regarding discharge planning. They will point you in the right direction. Depending on the hospital or facility, either the case manager or social worker would be a great resource. The case manager or social worker who is assigned to your loved one will be a great resource when navigating the transition from acute care to the next level of care. Their role is to gather information from the medical staff (doctors, nursing, and rehab) and insurance to understand what services will be covered upon transition to the next level of care.

[.lead]
How Should I Ask?

Personally, when I am stressed out, I can be quite direct and even terse. I forget that other people are juggling as many or more responsibilities than I am. Taking a step back and remembering to treat everyone with respect and understanding helps me be less demanding. That being said, it is important to begin the conversation. Here are a few steps to get you started:

* *Find out who to speak with* regarding discharge planning, and ask the best way to contact them.
* *Leave them a message* or send an email. State who you are, your relationship to the patient, and ask to schedule a time for a brief conversation regarding discharge planning. Make sure to tell them how to get back in touch with you if you are leaving a message.
* *When a time is set to have this conversation*, get out the notepad and write down your most important questions. Try to keep this list short as you will have an opportunity to follow up on the first conversation at a later date.
* *When the meeting time arrives*, ask your questions and take notes regarding their responses. Be considerate of their time as they likely have many of these meetings to work through.
* *As the meeting is wrapping up*, thank them for their time. A little gratitude goes a long way and shows that you understand they are busy and that their time is valuable.
* *Ask them for the best way to reach out* if you have any additional questions. Make a note of their response and use their preferred form of communication for following up.

[.lead]
When Should I Ask?

The time to start asking about the discharge options is as soon as you can. For patients whose discharge level is not yet determined, or may be between two options, it is still a good idea to begin learning what the options are. The sooner the better. This will provide the greatest likelihood of the best outcome.

If the choice is going back to their home or a family member’s home, ask about home healthcare and available caregiving services in the area. More on this in the next chapter.

If your loved one is not yet ready to go home, they will need to transition to a rehabilitation facility. There may be multiple good options available. If so, visiting each facility and making comparisons would be a good idea. Or there may not be many good options local to you. This causes the search to be widened and more time spent visiting the facilities.

There are good and bad rehab centers just like anything else. During my time as a PT, I have seen both. I have worked in a couple of nursing homes that I would not let my family ever stay in. Others are very clean with friendly staff and plenty of support for patients. You can usually tell during a short visit to the facility. If you take a look at three facilities, you will likely begin to see differences that set each one apart. Then you will be better able to identify a quality facility.

[.lead]
If You Haven’t Heard Back About the Discharge Plan in a Few Days

It is okay to reach out and check in with the one planning for discharge, but know that the most-likely scenario is that there is just no news yet. It could be that your loved one’s medical status and functional ability have not yet reached a point where the next level of care is known.

It may be that the next level of care has been determined and the case manager has reached out to other facilities to see who has a bed available. This takes some time as each facility will have to review the hospital documentation and determine if the patient is a good fit. It could be that they have been meaning to call you but have not had a spare moment as they have been putting out fire after fire for days. The important thing to know is that discharge won’t just happen without the patient and caregiver knowing the plan.

Here is a great example of a success story I observed when I previously worked in a hospital in Augusta, Georgia. An elderly woman was undergoing rehab following an extensive surgery. Her large family filled the sitting area with tension, asking therapists, doctors, nurses, dietitians, case managers, and even cleaning staff constant questions and unintentionally causing disruptions.

Craig, a transporter, saw the situation and decided to do what he could to help instead of ignoring it and going about his job. He took it upon himself to bring the family coffee and ask them about themselves. He asked about plenty of non-medical matters to ease their minds; Craig can talk for days about fishing. He did a great job of letting the family members talk through their anxieties. This allowed the family to trust him, and he was able to explain that the medical team at this hospital was top notch and that it would be best to let them focus on their work. The family’s demeanor changed. They became less demanding and more supportive. In turn, the staff was able to focus more on their job at hand and find time to answer the family’s questions when they had more information.

This example shows that when stress is reduced and communication is improved, the outcomes are better for all involved parties.

[.lead]
What’s Next?

If the discharge plan is home or a family member’s home, proceed to the _Most Important Next Steps_ at the end of this chapter. If the discharge plan is rehab, continue reading below. Looks like your loved one is headed to a rehabilitation facility. That can be a great opportunity for them to get stronger and regain their independence prior to heading back home. This will also give you more time to make sure home is ready for Mom before she arrives. More on this in Chapter 3.

Now the main goal is to find out what options are available for rehab and make the best choice for your loved one. Depending on the type of insurance coverage, the options for rehab may be limited. Most facilities will accept traditional Medicare, but options may be limited or have additional costs for managed Medicare plans or Medicare advantage plans such as Humana, AARP, Blue Cross, Kaiser, or Cigna.

This isn’t the place to have the health insurance discussion, but usually traditional Medicare provides the most options for most seniors in most situations. Don’t worry too much about this now. The case manager will only present facilities that will accept their insurance and have an open bed. This is what they do. Once you are presented with the options, it is a good idea to call the facilities and schedule a time to quickly tour the facility.

Here are some things to check out or ask about while touring a rehab center:

1. *Cleanliness of the facility:* Do you notice people actively cleaning the facility? In my experience, a general feeling of cleanliness or dirtiness is usually noticeable.
2. *Attitude of the employees:* The person showing you around the facility should definitely be smiling, helpful, and cheerful. It is their job to be an ambassador for the facility. Ask to tour the facility and pay attention to the attitude and pleasantness of the rest of the staff. Do they seem happy to be at work, or does it appear that they would rather be anywhere else? Not everyone has to have a great day at work every day, but the general feeling you observe should be that most people enjoy their job and are happy to be there. Pay special attention to nurses, CNAs, and therapists as they will be the ones caring for your loved one.
3. *Proximity to family and friends who could visit:* Leaving the hospital and not going home is very difficult for most people. It can result in increased anxiety or depression. Having friends and family close enough to come visit can be a great help. I have also observed that patients who have family around most often tend to receive a little more attention. This is not necessarily on purpose by the staff, but having someone there to advocate for your loved one goes a long way. Patients often can feel like a burden, even though they are not, and tend not to speak up for themselves as often as they should. Families, especially children, can do a good job bridging the gap. This increases the importance of finding a facility close to family and friends.
4. *Experience/longevity of staff:* Ask how long people you interact with during the tour have been at that facility. If the whole therapy staff just graduated from school, they may not yet be comfortable in their roles to provide the best level of care. Turnover can be very high in healthcare, so a facility with staff who have been there for years can show a more stable environment. This is usually indicative of higher-quality rehab outcomes for patients. Healthcare providers tend to stay where they feel they are making a difference in their patients’ lives.
5. *Staffing ratios:* Ask specifically for the number of residents per registered nurse (RNs), residents per nurse on the floor, and residents per certified nursing assistants (CNAs).
6. *Services offered/activities:* Most of the time, therapy will be provided five days a week. Are there other activities to help pass the time between therapy sessions? Activities can foster community and help patients break through the loneliness and depression that can be associated with being stuck in rehab when all their friends and family are at home.
7. *Long-term care availability:* If you are concerned that your loved one is no longer safe to return home, ask about long-term care following short-term rehabilitation. Most skilled nursing facilities have a certain percentage of their beds dedicated to short-term rehabilitation and the rest are for residents who need long-term care. Often, the long-term beds can be hard to come by. Getting out in front of this as an option will help you know what the next step is and can reduce the difficulty of finding another facility upon discharge from rehab.

Talk to your loved one. Let them know what you find. Go through the pros and cons of each option and make the best decision you can with their input. If they feel that they are part of the process, they will be more likely to _buy in_ to the rehab. This improves participation and outcomes for your loved one.

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What to Expect When They Get to Rehab

Once a discharge destination has been determined, your loved one will be taken to the rehab facility. Their medical records will be sent to the facility along with doctor’s orders for medication and anything else that may affect their rehab stay.

In the new facility, they will be assessed by the doctor, the nursing staff, physical therapy, occupational therapy, and speech therapy. This is required to happen in the first three days, but usually happens in the first twenty-four hours. Then each therapy discipline will set up a plan of care based on the needs of your loved one. They will likely have therapy five days per week and begin to show progress in preparation for transition home!

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Most Important Next Steps

1. *Identify and Connect with the Case Manager or Social Worker:* They are your primary source of information regarding the discharge plan, insurance details, and available facilities for rehabilitation.
2. *Research Potential Discharge Destinations:* Whether it’s returning home, going to a family member’s place, or transitioning to a rehab facility, be aware of what each entails and the support required.
3. *Visit Rehab Centers (if applicable):* Prioritize cleanliness, staff attitude, proximity to friends/family, longevity of staff, and additional services or activities. This ensures your loved one will receive the best care possible.
4. *Communicate with Your Loved One:* Keep them informed about potential options, and involve them in the decision-making process. Their engagement and _buy-in_ can significantly influence their recovery.
5. *Prepare Mentally and Logistically:* Understand that your loved one’s transition from hospital to rehab or home is a process. Equip yourself with knowledge, set realistic expectations, and gather resources to support them and yourself. 

Discharge planning is more than just the act of moving your loved one from the hospital. It’s about preparing, understanding, and setting the stage for the next phase in their recovery journey. As caregivers, our role extends beyond mere logistics. It’s about ensuring that our loved ones feel understood, supported, and actively involved in decisions about their care. With the right knowledge and resources, you can make this transition as smooth as possible.

With a grasp on discharge planning and an understanding of rehab facilities, it’s now time to prepare for your loved one’s eventual return home. Whether it’s straight from the hospital or after a stint in rehab, Chapter 3, _Preparing for Your Loved One’s Transition Home_, will equip you with insights, tips, and strategies to create a safe and supportive environment for their continued recovery. Join us in the next chapter as we take the next step in the caregiving journey.

== Chapter 3: Preparing for Your Loved One’s Transition Home

We finally have a plan in place to return home. That’s great news, but there are several other questions that might run through your mind. What condition is the house in? Is it safe? Will she be able to use the walker to get around? Did all the food in the fridge go bad while she was away? Can she climb the steps to get into the house?

Before discharge from the hospital or rehab, there are a few items that should be taken care of to allow for a safe return home. Hopefully a home evaluation has been done by a therapist who made safety recommendations. But if not, don’t worry. There are a few simple things to quickly improve the safety of the home. And keep in mind, continued therapy services will improve your loved one’s mobility, strength, and function. Reintegrating a loved one into their familiar surroundings after a period of absence brings a mix of emotion and responsibility.

This chapter shifts the focus to ensuring that the familiar space where they return is not only comfortable but also safe. We’ll guide you through the process of assessing, modifying, and finetuning a home to meet the evolving needs of your loved one. This isn’t just about physical structures and fixtures. It’s about creating an environment where they can relive cherished memories and create new ones with peace of mind.

The first thing to do is go to their home and assess it for safety. Because your loved one’s mobility will likely be impaired upon return home, setting it up for safety before they arrive is critical. Reducing the risk of a fall in the short-term should be the focus now. Assess or correct these safety issues while your loved one is still in the hospital or rehab. Refer to Chapter 5 for larger projects to make the home safer for the long-term.

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Quick fix safety issues

These few easy-to-do and relatively inexpensive items can make a large difference in the safety of your loved one:

* *Remove tripping hazards.* Any rugs should be removed, especially if they slide or create a change in elevation more than half an inch. There should never be cords crossing walkways. Lamps and other electronics should be removed or relocated so that cords and wires are against the wall and out of the way. Make sure walkways are clear.
* *Rearrange or remove furniture that reduces walking space.* Most walkers are twenty-five to twenty-nine inches wide. Plan for thirty-inch walkways.
* *Install handrails in the shower or tub.* If home health therapy services are going to be provided, it is best to wait for the occupational therapist to attempt a shower transfer. Suction cup handrails can be purchased from Lowe’s or Amazon. If the shower wall is not a good fit for suction cups, the handrail may need to be secured to the wall. Find a handyman who can make sure they are installed correctly.
* *Install a non-slip shower or tub mat.* Anyone can do this, and the extra traction will reduce slippage when entering or exiting the tub or shower. This can be purchased at your local box retailer or online.
* *Use elevated toilet seats with rails.* Many of the toilets in older homes are very low to the ground and hard to get up from. A bedside commode can be used as an elevated toilet seat over the commode. The rails and height of the seat will make toilet transfers much safer.
* *Ensure adequate lighting.* As we age, our eyes become less effective. It becomes harder to differentiate between surfaces and changes in elevation. Poor lighting makes this problem even worse. If you are unsure if the lighting is adequate, find a way to brighten up the room. Plug-in night lights that turn on automatically are an economical way to decrease fall risk.
* *Assess stairways for safety.* Use a temporary ramp if there are two to four steps without rails, or install handrails. You can buy foldable aluminum ramps for cheaper than you would think online or from a store like Harbor Freight or Tractor Supply.

For more things you can do to make Mom’s home safer, check out the _Home Safety Checklist_ in Chapter 3 of the free workbook.

The next step in preparing for the transition home is making sure medications are up to date and prescriptions are filled. If your loved one has regular medication that they take, but it has been a while since they have been home, you will need to make sure it has not expired.

They also may be coming home with new medication prescribed during her hospital stay or rehab stint. If this is the case, those medications will need to be filled. If you take the time to get your loved one set up with an online pharmacy, life can be much simpler for you both.

Express Scripts is one of the many online options available. You can save yourself and your loved one time and effort in the future when refills are required. This is especially helpful for medications that are taken regularly.

Once the medications have been managed, it is time to think about meals and meal prep. When first transitioning home, it is likely that a quick trip to the grocery store will be needed. You probably already know the items your parents will expect to be in the fridge when they get home. Make sure these things are in place to make the transition more smooth for them.

When shopping for groceries, remember protein is important for healing of bone, skin, and muscle. Extensive meal prep is probably out initially, so finding ways to incorporate protein easily is a good idea. Often I suggest cooking chicken in the crockpot and making a chicken salad with it. This can provide a light protein that can go with multiple meals to reduce difficulty with meal prep.

Another good option can be soups because they are easy to eat, provide hydration, and can be cooked in a large batch. Before discharge day, ask the case manager if your loved one would qualify for Meals on Wheels or another senior meal provider. If available, this will reduce friction upon return home. But know that home-delivered meal services often have long waiting lists.

Ask about senior centers or local churches who provide meals for the elderly. Remember, it is unlikely that they will be able to immediately jump right back into everything they were previously doing. So it is important to find ways to reduce their energy output during the transitionary period. This allows them to focus on healing and building their strength with reduced risk of overexertion or a fall. About Durable Medical Equipment (DME) Durable medical equipment, or DME, is any sort of mobility aid or medical device that is designed to be used many times. So a rolling walker, hospital bed, or oxygen concentrators would qualify. Items like bandages or incontinence pads would not be considered DME.

The case manager or social worker will be a resource for making sure any needed equipment is provided to allow for a safe transition home. They will speak with the therapy team who will make recommendations for a cane, walker, a wheelchair, hospital bed, or oxygen if needed. The case manager can let you know which of the recommended devices will be covered by insurance and set up delivery of this DME.

If your loved one already has a cane, walker, or wheelchair, it is a good idea to bring this medical equipment to the therapy team. They will be able to confirm that it is safe and the proper fit for your loved one. If adjustments are needed, a therapist will make those pretty quickly. If the DME is worn out, not a good fit, or not appropriate, they will let you know.

There is a chance that the therapy team will recommend a certain type of equipment that is not covered by insurance. An upright walker or a transport wheelchair, for example, may be covered by some insurances and not by others. If a recommended piece of DME is not covered by insurance, often they can often be purchased through Amazon. If financial assistance is needed, contact the supplier directly and ask if they have any programs to help those in need.

Another good option is to find a local charity or nonprofit who specializes in medical equipment assistance. In my area, I often recommend Friends of Disabled Adults & Children (FODAC). They have a thrift store in Tucker, Georgia. Many different types of assistive devices and DME can be purchased second-hand. They also have some services that repair equipment when needed. Ask the case manager if they have any referrals for nonprofits in your area.

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Setting Up Home Healthcare

If your loved one can ambulate in the community and has consistent transportation, outpatient therapy services would be the best fit. One must qualify as being _homebound_ to receive home health therapy services, meaning they truly can’t leave the house without assistance. Ask some friends or look for reviews of local outpatient therapy services and call to set up an evaluation.

The most-likely scenario for continued therapy services following transition home would be home healthcare. The discharging physician will write orders for these services, and the case manager will send them to a home health company that serves your area.

If there is a certain company that you would like to work with, reach out to the case manager and let them know. You should receive a call from the home health provider to schedule the initial assessment. This will be completed by a nurse or a physical therapist. It is usually completed within the first forty-eight hours of arriving home.

If skilled nursing care is required, the nurse will set up a plan of care and let you know how often they will be scheduling appointments. Often, unskilled nursing care may be provided as well for bathing, dressing, grooming, and feeding. This will likely be a part-time person providing assistance and should be thought of as occasional additional help.

If your loved one needs assistance throughout the day with light tasks until they regain their independence, it would be a good idea to look into paying for a home care aide. A quick Google search of _home care services_ should provide you with a list of companies in your area. Another good idea would be to ask the home healthcare nurse or company if there is a certain home care agency they would recommend.

Home Health Therapy Services Physical therapy (PT), occupation therapy (OT), and speech therapy (ST) can all be provided in the home health setting. Depending on the medical event that precipitated the need for home health, one or all three disciplines may be ordered. The most commonly ordered is physical therapy, but some people need all three disciplines. 

Each type of therapy will be scheduled and completed by a different therapist. These are the types and roles of home health therapy services:

* *Physical Therapy:* The primary goal of home health physical therapy is to improve the functional mobility of the patient within their home. The therapist will assess the ability to safely navigate the home. This includes assessing the safety and setup of the home itself, as well as the ability of the client to enter, exit, and move within their home. They will instruct your loved one on safe use of assistive devices such as walkers and canes. They will also recommend exercises to improve strength, endurance, power, and range of motion to improve overall functional mobility within the home.
* *Occupational Therapy:* The primary goal of home health occupational therapy services is to improve the independence of the client within their home for tasks called ADLs, or activities of daily living. This includes bathing, dressing, grooming, feeding, transferring, and toileting. Improving these areas will decrease the burden of care and allow for increased independence with the daily routine.
* *Speech Therapy:* The main component of speech therapy in this setting is to treat speech disorders, which include language, communication, cognition, and swallowing dysfunction.

Each of the above disciplines will likely provide a home exercise program to be completed outside of scheduled therapy appointments. This is to improve the healing process and maximize effectiveness of scheduled appointments. Just like with nursing care, the home health agency will call and set up an appointment for therapy evaluations. These will be scheduled as soon as possible. Depending on how rural of a community it is and the ability of home health agencies to staff adequately, it could be a few days before the evaluation.

Once your loved one has been evaluated, the evaluating therapist will set up a course of care for their therapy. This will include goals for therapy. Be sure to let them know if your loved one has any particular concerns or goals for therapy services. The most common goal is to get back to walking like they were previously. Other people want to return to cooking or caring for their home. 

Let the therapist know what is important to your loved one so they can individualize the treatment to improve the likelihood of success. Therapy will likely be one to three times per week for up to six weeks based on need. The follow-up visits may be completed by a physical therapist assistant (PTA) or a certified occupational therapy assistant (COTA). After home healthcare is complete, they should be safe to operate their daily routine, but they are unlikely to have met or surpassed their prior level of function.

At this time, it is usually a good idea to ask your loved one’s primary care physician for a referral for outpatient physical therapy services. This is a more advanced type of therapy that is provided at a clinic in the community. The act of getting out of the house and driving or riding to another location for advanced physical therapy has many benefits. Just leaving the house, getting in and out of the car, and walking into the PT clinic is often more challenging than home health physical therapy. Add in an hour of therapy, and that is a high-level workout that will benefit your loved one as they return to their daily routine.

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Setting Up Follow-Up Appointments

Upon discharge from the hospital, the doctor who provided the surgery or other necessary care will likely give instructions for setting a follow-up appointment. If your loved one spent some time in rehab, it is possible that appointment has already occurred.

Be sure to double-check the scheduled appointments. It is important to attend these follow-up appointments, as this is the opportunity for the doctor to monitor their health and progress, and adjust medications as needed. It is also the opportunity for you and your loved one to discuss any concerns you have regarding the outcomes and return to health.

When setting up appointments, be sure to keep in mind schedules for therapy as well as other appointments. If an appointment overlaps, it is okay to ask to reschedule. This is a much better outcome than outright missing a scheduled visit due to the unforeseen length of a previous doctor’s visit.

It may feel like all day every day is filled with therapy and doctor visits. While it can be an annoyance initially, remember it is not forever and each one is important for the health and future independence of your loved one. Try to focus on helping them regain their independence and not the daily stressors.

When preparing for an upcoming visit to the doctor, get out the notepad you had in the hospital once again. Which doctor are you going to see? Is it the surgeon? Ask about how Mom is doing compared to original prognosis. Maybe ask when she will be released back to her primary care physician for routine followups. Ask about prescription renewals or changes in medication. Whatever is most important.

Think about what questions you have ahead of time. Three is usually a good number. This will give you and your loved one the best opportunity to maximize the short time you have with the provider.

Later in Chapter 4, we take a look at how assistance can be provided within the home outside of healthcare services. We will also go into the benefits and challenges of family as caregivers and contrast that with hiring caregivers. The goal is to give our loved ones as many quality years as possible outside of the medical system. This is a concept that will be further discussed in Chapter 4.

Congratulations! You and your loved one have survived the transition home. Unfortunately, the journey is not complete. But congratulate yourself, that was one of the most challenging parts of this journey. The quality years spent with family and friends while aging in place will make the difficulties experienced to date well worth the effort. Look forward to the next chapter in your loved one’s life.

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Most Important Next Steps

1. *Home Assessment:* Begin with a comprehensive review of the current living space. Look out for any potential hazards, accessibility issues, and areas that may need modification. Refer to the quick fix safety issues at the beginning of the chapter.
2. *Confirm DME Needs:* Check with the social worker or case manager to see what DME will be provided. If additional DME is needed, check Amazon or another online retailer. If the currently owned DME is going to be used, have therapists assess its safety and height.
3. *Set Up Continued Therapy Services:* Check with the social worker about how outpatient or home health therapy services will be set up. Schedule these appointments.
4. *Make Sure Follow-Ups Are Scheduled with Doctors:* Follow-up appointments are usually scheduled the last time a patient saw the doctor, but it is a good idea to keep a list of doctors who provided care and call their office to confirm a follow-up is scheduled or not needed.
5. *Engage in Ongoing Communication:* Continuously converse with your loved one about their needs and feelings. Ensure they are comfortable and actively involved in decisions about their living environment.
6. *Start Thinking about if Family or a Paid Caregiver Will Provide Ongoing Assistance:* This will be addressed in the next chapter, but it’s time to think about who and how help will be provided as needed for your loved one. Hopefully it is a temporary measure, but they likely need more help in the day-to-day routine.

A home is more than just four walls and a roof; it’s a sanctuary where memories are built and cherished moments are shared. Ensuring that this haven is safe and accessible for your loved one is a labor of love. With the right approach, knowledge, and support, you can create a comfortable environment that facilitates aging with dignity and grace.

Now that you’re equipped with the insights to curate a safe and accommodating living space, it’s crucial to empower the person at the heart of it all: your loved one. In Chapter 4, _Empowering Your Loved One to Age in Place Safely_, we will guide you on fostering independence, instilling confidence, and ensuring your loved one feels truly at home in their surroundings. Together, you will co-create a space where they can thrive.

== PART II: AT HOME

image::https://i.nostr.build/NDhSOB7LeBxEWccM.png[part 2, 300]

== Chapter 4: Empowering Your Loved Ones to Age in Place Safely

Aging in place is a deeply personal journey, resonating with the natural human desire to maintain independence and familiarity as we age. In this chapter, we look into understanding the various factors and considerations that influence this choice. We’ll explore the economic aspects of aging in place versus transitioning to assisted living facilities. 

This chapter also discusses the instrumental role technology plays in bridging the gap between independence and necessary care. As we balance the past’s sentiments with the innovations of today, this chapter offers guidance on making the most informed decisions for our loved ones’ well-being.

My mission is to provide you and your loved ones with the most scarce resource on earth: time. And not just time, but quality time, together. We all know deep down that our time together is running out. We will often think about anything else to avoid dealing with this fact. At some point, we will have no more time with our loved ones, no more time for ourselves, no more time to see children and grandparents interact in the most joyful ways, and eventually no more time on earth.

While this is a depressing thought to dwell on, this fact should give life meaning and quality to the time we do have. Maybe your loved one’s hospitalization is exactly the wakeup call for you both to stop wasting time and live life to the fullest.

The best way to set your parents up for more quality time is to help them age in place. According to an AARP survey, 77% of seniors want to stay in their own homes as they age. Ask your loved one if that is their goal. If the answer is yes (and it likely is), we need to do everything we can to set them up for success with aging in place.

So what is _aging in place_? Briefly, it means staying in your own home as you age. But it is so much more than that. It is a lifestyle, an ethos, a way of making decisions to try to be the best we can be. And to help our loved ones be the best they can be. This leads to a greater quality of life. It also leads to more enjoyment with friends and family, less stress, more agency for you as a caregiver but also for your loved one.

It is hard growing old, but we can take some of the sting out of it with a little planning and effort. And we will know that we have done the best we can for our parents and ourselves. As Dwight D. Eisenhower famously said, _Plans are nothing, planning is everything._ Whether you know it or not, you have a plan or a set of expectations. And as we all often find out, the plan or expectations were worthless because life seldom goes as we would expect.

But the genius of the quote is the second part, _Planning is everything._ While we can’t know the outcome, thinking ahead to possible scenarios will help us make the bestfootnote:[_Where we live, where we age: Trends in home and community preferences_, American Association for Retired People, 2021, https://livablecommunities.aarpinternational.org.] decisions today. Even though the future is unknown, this will give us and our loved one the best chance possible to live a quality life at home and stay engaged with family and the community.

In this chapter, we will take a look at...

* Who is appropriate for aging in place
* Greatest risks to aging in place
* Types of assistance in the home

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Who Can Age in Place?

Ideally, everyone would be able to live the remainder of their life at home if they so choose. Unfortunately, this is not always possible. Aging in place depends on how independent a person or couple are versus the amount of assistance that can be provided in the home.

Assistance can come from friends, family, paid caregivers, or even healthcare workers. This community of assistance allows them to avoid psychological conditions such as sustained depression or anxiety that can lead to the need for more care. As people age or have an injury, and their needs grow past the amount of help that can be provided within the home, it may no longer be appropriate to continue aging in place. A transition to a facility designed to provide the care needed would be the next step. But we will get to that in Chapter 10.

For now, let’s assume that since you are reading this book, you are prepared to do what you can to help your loved ones remain in their home safely for as long as possible. I want to congratulate you on the choice you are making to help the person you are caring for age in place. It is an unfortunate fact that many of our elderly do not receive the care they deserve. Thank you for doing your part in helping our community care for those who need our help the most.

Also know you are not alone. A 2020 AARP report stated that approximately 41.8 million adults in the US are caregivers to an adult over the age of fifty. Many of them are helping their loved ones age in place. And with that starting point in mind, let’s discuss what could go wrong and prevent someone from continuing to safely age in place.

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Greatest Risks to Aging in Place

Far and away, the greatest risk to our loved ones is a fall and subsequent injury. The CDC has many statistics that clearly make this point. Here are a few:

* More than 25% of people 65+ have a fall each year.
* Less than half the people who fall tell their doctor about it.
* Having a fall in the past year doubles your risk of falling again.
* 95% of hip fractures are caused by falling.
* Falls are the leading cause of fatal injury and the most common cause of nonfatal trauma-related hospital admissions in older adults.footnote:[AARP, _2020 Report, Caregiving in the U.S._, research report, May 2020, https://www.aarp.org/content/dam/aarp/ppi/2020/05/fullreport-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf.]footnote:[_Facts About Falls_, Older Adult Fall Prevention, Centers for Disease Control and Prevention, accessed January 5, 2024, https://www.cdc.gov/falls/facts.html.]
* 800,000+ people per year are hospitalized because of a fall-related injury, most often because of a head injury or hip fracture.
* Falls are the most common cause of traumatic brain injury (TBI).

As you can see, the risk of falling is a significant one, and we should do all we can to prevent a fall and injury. The costs associated with a fall are quite staggering as well. Each year, about $50 billion dollars is spent on the medical care of someone 65-plus who has had a nonfatal fall. Twelve billion of that is paid for by private or out-of-pocket payers. Almost $800 million is spent on fatal falls. With an aging population, it is estimated that falls will increase by 50% by the year 2030.

It is up to us as caregivers to do everything we can to reduce the risk of falls and injury. This is the most direct path to improving our loved one’s lives and ability to age in place. To have more quality years enjoyed at home. The CDC recommends using the _Stay Independent: 12 Question Tool_ to identify fall risk. A score of four or greater is indicative of significant fall risk.

You can find these twelve questions and how to score the test included in the Chapter 4 bonus content of the free workbook. There are also three key questions that can identify fall risk in your loved one. If the answer is yes to any of these questions below, they are at significant risk of falling.footnote:[_Older Adult Falls Data_, Older Adult Fall Prevention, Centers for Disease Control and Prevention, accessed January 5, 2024, https://www.cdc.gov/falls/data/index.html.]

* Do you feel unsteady when standing or walking?
* Do you worry about falling?
* Have you fallen in the past year?

These questions come directly from the STEADI Algorithm for fall risk screening, assessment, and intervention among community-dwelling adults sixty-five years and older and was produced by the CDC. If your loved one completed the screen and is not currently at a significant risk of falling, there are a few preventive things you can do to help them maintain their low risk of falling.

These include providing education regarding fall prevention, assessing vitamin D intake and supplementing daily if found to be deficient, joining a community exercise program to stay active and healthy, and reassessing fall risk yearly or immediately following a fall. If your loved one has been identified as a significant risk of falling, immediate action should be taken to reduce these risks.

Start by assessing their modifiable risk factors.

* *Have their gait, strength and balance evaluated by a physical therapist.*
** Timed Up and Go (TUG) test to test gait https://www.cdc.gov/steadi/pdf/TUG_test-print.pdf
** 30-second chair stand test for lower extremity strength https://www.cdc.gov/steadi/pdf/STEADI-Assessment-30Sec-508.pdf
** 4-Stage Balance Test for static balance https://www.cdc.gov/steadi/pdf/4-Stage_Balance_Test-print.pdf These are validated tests and measures to assess these items and identify deficits.
* *Have their primary care physician or pharmacist identify any medications that may increase fall risk.*
** Ask them to use Beer’s Criteria to make recommendations. This is a list of medications to rule out that may be inappropriate for use in older populations due to side effects, potential toxicity, and drug interactions.
* *Eliminate home safety hazards.*
** Refer back to Chapter 3 and make sure all quick fix safety issues are addressed.
* *Check for orthostatic hypotension.*
** Any therapist or nurse should be able to complete this test.
** Blood pressure is taken lying down after resting for five minutes and immediately upon standing.
** Recovery blood pressures are taken after standing for one and three minutes.
** A drop of 20 mmHg in systolic (top number) or 10 mmHg diastolic (bottom number) is indicative of a positive test.
* *Check visual acuity.*
** Schedule a yearly check-up with the optometrist.
** Use the Home Snellen Eye Test to check for poor vision. This is a printable chart with directions for use to estimate quality of vision. If vision is great, you do not need to see the doctor, but if there is difficulty reading the top six to eight lines, a trip to the doctor is needed. https://www.aao.org/eye-health/tips-prevention/home-eye-test-children-adults
* *Assess feet and footwear.*
** A home health or outpatient physical therapist would be a good resource for helping to assess footwear and can make a referral to a podiatrist if needed.
* *Assess vitamin D intake.*
** For adults under 70 years of age, 60 IU of vitamin D is recommended daily.
** For adults over 70 years of age, 80 IU of vitamin D is recommended daily.5
* *Identify comorbidities.*
** Comorbidities are any additional disease that can have an effect on another disease or condition within a person. Common comorbidities that can cause problems in our loved ones include heart disease, high blood pressure, respiratory disease, dementia, and other mental health concerns, cerebrovascular disease, joint disease, and diabetes.

After assessing fall risk, the CDC recommends some common interventions to reduce fall risk. Most of these interventions are related to getting your loved one set up with the medical providerfootnote:[Meghan Meehan and Sue Penckofer, _The Role of Vitamin D in the Aging Adult_, Journal of Aging and Gerontology 2, no. 2 (December 2013): 60–71, https://doi.org/10.12974%2F2309-6128.2014.02.02.1.] who could help them reduce their fall risks. That could be a physical therapist, occupational therapist, their primary care provider, an optometrist, or a podiatrist based on their individualized needs.

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Assistance Within the Home (Outside of Home Healthcare Services)

During the transition home, it is likely that your loved one will need additional help outside of that provided by home healthcare. Although it is common for our loved ones to insist they can immediately fully regain their independence, this is not usually the case. The extra strain of managing the home and day-to-day chores while trying to recover fully from a health crisis can lead to overexertion and accidents. The desire for autonomy is rarely worth the increased risk in the early stages of returning home.

So if they need help, who is best to provide it? Let’s compare and contrast family assistance and paid caregivers. 

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Family Assistance

*Benefits:* If there are multiple family members close by to assist, they can spread out the load, and are already familiar with their charge. In a family with good interpersonal communication, the support provided by family can be invaluable during this emotionally draining time of healing.

*Challenges:* If you are the only person providing the care, caregiver burnout is a significant risk. And if you find yourself feeling stressed, anxious, and constantly worrying, you need to get help. Check out the bonus content at the end of Chapter 4 of the associated free workbook for a resource on caregiver burnout. Another challenge of family assistance is there could be gaps in the knowledge of caring for a loved one. We often don’t know what we don’t know. The good news is if you are reading this, you are looking in the right place for answers!

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Paid Caregiver

*Benefits:* Finding a caregiver with experience caring for the geriatric population from a reputable company makes things easier for everyone. With their experience, they often have tips and tricks to help reduce the burden of care. They can efficiently manage the day-to-day chores and routines of their clients. Another benefit is respite time for family. Caring for a loved one is physically and emotionally draining. Knowing your loved one is well cared for while you have an opportunity to run errands, go to your own appointments, or just take some _me time_ will reduce everyone’s stress. This leads to better outcomes for all involved.

*Challenges:* It takes time and effort to find the right company, the right caregiver and the right schedule. Often we find ourselves _just doing what needs to be done_ instead of finding the right person to help because it is easier in the short run. But this creates more stress and caregiver burnout in the long run. Another challenge with hiring a paid caregiver is the cost. While there are some programs and companies who provide financial assistance, this is not the norm and takes time and effort to apply.

The good news is that the answer doesn’t have to be one or the other. It may be a combination of both family help and paid caregivers. Finding the right fit, the right schedule, and the right division of responsibilities between family and paid caregivers will provide the best outcomes for everyone. This doesn’t have to be a permanent solution. Be flexible with trying various ways of all working together. As your loved one grows in independence, the paid caregiver hours can be reduced. Or the time you spend doing chores for your parent can be transitioned to more enjoyable activities and family time. This can really improve everyone’s quality of life.

If you decide to hire a caregiver, refer to Chapter 7. The process and options are discussed in much more detail in that chapter.

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Most Important Next Steps

1. *Review the Stay Independent 12 Question Tool to Identify Fall Risk:* This can be found in the Chapter 4 Bonus Material of the companion workbook.
2. *Assess Their Modifiable Fall Risk Factors:* If they are identified as at risk of falling, go through the modifiable risk factors above and schedule appointments as needed with a physical therapist, occupational therapist, their primary care provider, an optometrist, or a podiatrist based on their individualized needs.
3. *Identify Who Will Be Providing Assistance at Home:* Either family, a paid caregiver, or a combination of both should be used to provide initial assistance at home for your loved one. Assume they will need more help initially. You can always reduce assistance as they regain their health and independence.
4. *Reassess Regularly:* Set a reminder in your phone or on your calendar to repeat the above steps. Set this quarterly or twice per year. This will help you stay abreast of changes to your loved one’s mobility status to reduce the risk of future falls.

Aging in place is the preferred outcome for most of the elderly and aging population. Talk to your loved one about their desire to age in place. It can be a difficult conversation, but when both parties are on the same page, it makes the needed changes go much smoother. Start small in the conversation about tripping hazards or minor concerns. Build on the small victories and grow the discussion until y’all are listing pros and cons of moving to a new place and remodeling the current home.

While you have been given a map for helping your loved one age in place, remember the map is never the territory. It can’t be. The actual journey is individual to you as a caregiver and your loved one. Use the map, but understand your experience may vary greatly. Progress over perfection. Keep moving forward.

In the next chapter, the age-friendly home will be discussed. The decision to update, renovate, or move is a challenging decision our loved ones will eventually face. The pros and cons of each option will be examined with technologies that can help keep our loved ones safe in their homes.

== Chapter 5: The Age-Friendly Home

As our parents and grandparents age, their homes can become challenging spaces. Stairs turn into obstacles, bathrooms become risky, and what was once a haven can subtly transform into a hindrance. It’s a reality many of us face, yet it’s a transition that doesn’t have to be filled with stress or uncertainty.

In this chapter, we look at transforming a traditional home into a secure, age-friendly space. Our journey begins with a straightforward approach: assessing and addressing the immediate safety concerns. These initial steps, often low-cost and straightforward, lay the groundwork for a more secure home environment.

Refer back to Chapter 3 and review the quick fix safety issues. This is where you will get the most _bang for your buck._ This list is full of free and inexpensive ways to improve the safety of the home and takes a small bit of effort. But what about when simple fixes aren’t enough? The dilemma of renovating an existing home versus moving to a purpose-built community is a significant decision that many of our loved ones face. Through this chapter, we weigh the pros and cons, providing a balanced view to help you make an informed choice that aligns with your loved one’s desires and needs.

We also explore innovative solutions that technology offers. From personal emergency response systems to smart home technologies, these tools can significantly enhance the quality of life and safety for seniors, offering peace of mind to both them and their caregivers.

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Safeguarding the Home Environment

The largest task to tackle when working toward aging in place is safeguarding the home environment. This is because there are limitless modifications that can be made, but a cost versus benefit analysis should be performed to determine the best option for your loved one.

At this stage, a good option is to bring in an expert. There is a Certified Aging in Place Specialist (CAPS) certification that comes from the National Association of Home Builders. A person with this designation could be a physical therapist, occupational therapist, or a home inspector. They often will come out to the house and assess it for safety and make recommendations to improve the ability of your loved one to age in place.

This may seem a bit costly, but it is usually well worth it as prevention is way less expensive than the bill following a fall and injury.

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Home Modifications and Investments

Home modifications and renovations sound like quite the expensive option. And while you could spend $100,000+ modifying an older home for aging in place, you can also get some really good return on investment with a few light or moderate home modifications.

Before you spend any money on the current home, it is a good idea to make sure the ability and desire are there to allow for aging in place. A lot of the homes our loved ones are living in were built following World War II. I love these traditional homes for their simplicity and character, but they do not always make the best option for aging in place.

At this time, it would be a good idea to work through the pros and cons of renovating the current home versus moving to a newer home built specifically for aging in place. These communities are popping up all over the country and have some advantages, but it’s also hard to say goodbye to your current home.

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Pros of Staying in Current Home

1. *Familiar environment:* Comfort and emotional attachment to home and neighborhood.
2. *Likely paid-off mortgage:* Financial stability and fewer expenses.
3. *Maintains continuity:* Allows for consistency in routines, lifestyle, and local connections.
4. *Existing social networks:* Close proximity to friends, neighbors, and social activities.
5. *Personal history:* The home may hold sentimental value, memories, and personal belongings.

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Cons of Staying in Current Home

1. *Need for modifications:* Homes may need significant and costly updates for safety and accessibility.
2. *Maintenance requirements:* Older homes may have more maintenance issues and associated costs.
3. *Lack of accessibility features:* Existing homes may not be designed for mobility aids such as walkers or wheelchairs.
4. *Potential isolation:* If friends move away or pass on, one might become isolated.
5. *Stairs and other hazards:* Multi-level homes and other design features may become problematic as mobility decreases.  

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Pros of Moving to a New Home

1. *Tailored accessibility:* The home is designed with features that aid in mobility and accessibility.
2. *Decreased fall risk:* The home is likely built with fall prevention in mind, such as nonslip surfaces, wider doorways, and no stairs.
3. *Futureproofing:* The home is designed to accommodate changing needs as one ages.
4. *Lower maintenance:* New homes are often more energyefficient and require less maintenance.
5. *Potential for better location:* Depending on where the new home is, it may be closer to health facilities or services that the individual regularly uses.

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Cons of Moving to a New Home

1. *High upfront cost:* The cost of a new home and move can be significant.
2. *Stressful transition:* Moving and acclimating to a new environment can be stressful.
3. *Distance from social connections:* One may have to leave an established network of friends, family, and familiar settings.
4. *Potential loss of memories:* The emotional impact of leaving a long-term home can be significant.
5. *Adaptation:* It may take time to adapt to new home systems and technology.

It is possible there is not a clear-cut answer to the problem of modifying the current home versus moving to a new home. And even if the answer is to move to a new place, eventually, there are still some relatively inexpensive home adaptations that will improve the current experience of aging in place.

Once easy modifications have been completed from the previous chapter and section, it is time to assess the next level of recommendations. You can find a great handout for _The 5 Must-Have Home Renovation Ideas for Aging in Place_ included in the Chapter 5 bonus content in the free workbook. This includes light renovation-type ideas such as changing out a toilet for a taller one. Switching out low cabinets for pullout drawers will improve efficiency and reduce the need to crouch down to access the back of the cabinets. These small changes will have a cost to them but can improve the biomechanics of our loved ones during their dayto-day activities and reduce risk of falls and injury.

If your loved one is determined to stay in their current home and is willing to make some modifications to improve the layout for aging in place, there are seemingly infinite ways to improve their living environment.

The greatest bang for your buck will be eliminating or reducing the need for steps. If there are five steps to enter the home, a ramp can be built. If there is a step-in tub, a low-profile shower can be installed. If there is tile in the kitchen or bathrooms, a hard rubber flooring can be installed. Doorways can be widened to eventually accommodate a walker or wheelchair. The size of the bathroom can be expanded to make more room to safely navigate. If the washer and dryer are on a separate level from the main living environment, it would be a good idea to move these appliances or to have someone who can assist with laundry.

All of this can be quite expensive, but when you compare the onetime expense of remodeling versus the ongoing expense of skilled care, the best course of action is often quite apparent. For example, the national median cost of an assisted living facility (ALF) in 2021 was $4,500 per month, and it is likely to continue to rise. The cost for an average private room in a skilled nursing facility (SNF) was over $8,900 per month.footnote:cost[_Genworth Cost of Care Survey: Median Cost Data Tables_ (PDF), Genworth, January 31, 2022, https://pro.genworth.com/riiproweb/ productinfo/pdf/282102.pdf.] I don’t know about you, but I would want my loved one in a facility that is significantly above average. A shared room at the skilled nursing facility I work in costs $12,000 per month at the time of this writing.

Here’s a thought exercise to determine the cost benefits of remodeling versus requiring assisted living and then skilled nursing care for different lengths of time. If Mom is no longer safe at home and needs transitioning to an assisted living facility, that change in assistance alone would cost $54,000 per year. If after three years in the ALF, she needed two years in a skilled nursing facility before she passed, the SNF would cost $106,800 per year (these are 2021 prices).footnote:cost[] So the total costs for that course of care would be $375,600. That seems so prohibitively cost restrictive.

As you can see, putting $20,000– 50,000 or more into aging in place could provide a significant long-term savings. Adding in a little additional assistance from a paid caregiver to reduce the risk of a bad accident and improve quality of life for our loved ones may make financial sense as well. But we will go more into the paid caregiver discussion in Chapter 7.

I can see you thinking, _That is nice and all, but I don’t have $20,000-plus dollars to dump into my mother’s house._ That is a very understandable initial reaction and is indeed the case for many people.

If that is truly the case, you can still do very well for your loved one by following the free and lower-cost options provided in previous chapters as well as the lifestyle guidelines in the next chapter. Anything you do, even just reading this book is a step in the right direction. And small, consistent progress is the best way to achieve large results over time.

For some of you though, there may be a source of funds available that you are not thinking of. According to the 2023 Harvard study titled, _Housing America’s Older Adults_, 59% of homeowners age 65–79 own their homes outright.

This is potentially a large basket of resources that can be used to make aging in place renovations or pay for remodeling. There are options available to access this equity through a home equity line of credit or a reverse mortgage. At times, these options have gotten a bad rap when used irresponsibly. But there are legitimate uses for both products.

There are many different ways they can be structured. I recently spoke to a lender in the space who let me know about a product that would allow for equity to be accessed without needing to make a payment and a guarantee that they can live the rest of their life in the home. The loan would be paid off after the passing of your loved one.

There are also programs that allow for the equity to be used as a line of credit that can be borrowed against as needed and paid down as it is convenient.footnote:[_Housing America’s Older Adults_ (PDF), Joint Center for Housing Studies of Harvard University, published 2023, https://www.jchs.harvard.edu/sites/default/files/reports/files/Harvard_JCHS_Housing_Americas_Older_Adults_2023.pdf.]

Taking the time to understand these options and talking to someone with greater specific knowledge in this area would likely be a good idea. Be sure to check references, talk to a few people, and find the person who you and your loved one are most comfortable with assisting in this complex decision.

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Moving to a New Home

If the choice is to move to a new home, then selling the current home and accessing the equity to purchase a new home may be the best choice. When considering a new (or new to you) home, there are a few factors to consider including the layout of the home, the location of the home, maintenance/upkeep, and finances.

The first thing to consider is the layout of the new home or its accessibility. If it is a newly constructed home in a fifty-five-plus community, it is very likely that aging in place design has been considered. It is also important to take into consideration the future health needs of your loved one. Do they have any health concerns currently that are likely to progress? It is best to assume that at some point a wheelchair may be needed. Is the home wheelchair accessible?

Location is the next factor to consider. How close is the new location to the family? How far away are hospitals and your loved one’s doctors? Are there grocery stores close by? What about church or activities for seniors to stay engaged in the community? The next topic to consider is maintenance of the new home and yard. Will it take much more upkeep? 

Moving to a larger, more spacious home often is the plan. Your loved one may believe that this will entice their children and grandchildren to come stay with them more often. Is this actually the case? Is this trade-off worth the extra cost of maintaining a larger home as well as the added expenses of heating and cooling a larger space? Maybe not if the family is close by anyway.

The last thing to consider is finances. This includes HOA dues, lawn maintenance costs, insurance costs, property taxes and cost of utilities. It will be well worth the time to figure out what monthly expenses would be in the new location and compare that to monthly income or personal savings.

A financial planner may be the right expert to find here, but make sure they are a feeonly fiduciary financial planner. This way you know what they are going to charge you up front and they don’t have any reason to sell you some insurance or annuity product that you don’t need.

Once you and your loved one have taken all these things into consideration, if a new home is the best choice, congratulations! They will have a brand-new space to make their own and age in place. Celebrate this with them!

While it will likely be hard for them to leave their current home behind, this turning of the page presents limitless new opportunities. Take full advantage of the quality time you have left together.

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Using Technology to Assist with Aging in Place

Technology continues to advance, and it is natural to resist initially. People don’t like change. We convince ourselves that things are fine just the way they are and that nothing needs to change. But unfortunately, resisting change is like holding onto a tree branch in the middle of a rushing river. Sure you can stay where you are for some amount of time, but your energy would be better spent preparing for what is downriver once you let go and go with the flow.

Aging may not be fun, but it sure beats the alternative. The good news is that there are constantly new products and services being designed to help our beloved seniors age gracefully and give them the greatest chance to age in place. Here are some examples worth looking into for your loved one.

* *Personal Emergency Response Systems (PERS).* These devices allow seniors to call for help in the event of an emergency. Some also include fall detection, which can automatically notify a caregiver or emergency services if a fall is detected. Think of the _Help, I’ve fallen and I can’t get up!_ commercial from the late ’90s. The options, cost, and technology has improved much since those first systems.
* *Home monitoring systems.* Remote monitoring systems are the first option. These vary in scope and cost, but there is an option for everyone. Cameras can be set up within the home to always know what your loved one is doing. But unless agreed to and desired by your parents, this can be an invasion of privacy that is unnecessary. Many of these remote monitoring systems have sensors but not cameras. These can provide information to let you know your loved one is still moving around the home in their normal pattern via an app on your phone. They can also alert you and emergency services if a fall is detected or your loved one is unusually still in an area of the home that would be considered abnormal. Other benefits of remote monitoring systems can be gait speed detection. If your loved one is moving slower than normal, it will alert you and you can check in. Often, unsteady gait and decreased gait speed can be indicative of an underlying medical condition that needs to be checked out by their primary care physician.
* *Smart home technology.* Smart lights, thermostats, and door locks can all be controlled remotely, making it easier for seniors to manage their home environment. Or for you to help your parent manage their home environment without having to make the trip to their house. Voiceactivated assistants, like Amazon’s Alexa or Google Home, can also be used to control these features.
* *Medication management devices.* Options include Hero or MedMinder. These tools can provide reminders to take medication, dispense the correct dosage, and notify caregivers if a dosage is missed. These devices can help reduce the risk of injury from medication mismanagement, which affects 1.3 million seniors per year.
* *Telemedicine platforms.* Telehealth has become more popular in recent years, and it allows seniors to consult with healthcare providers from the comfort of their own home. This can help increase the consistency of care and allow for easier access to providers for minor concerns that may not warrant an in-person visit.
* *Mobility aids.* Technological advancements in mobility aids such as electric wheelchairs, mobility scooters, and stairlifts can greatly enhance the ability of seniors to move around their home and community.
* *Health monitoring devices.* Wearable fitness trackers or smartwatches (e.g., Apple Watch, Fitbit) can monitor vital signs, sleep patterns, physical activity, and even detect falls. In some cases, they can alert caregivers orfootnote:[_WHO launches global effort to halve medication-related errors in 5 years_, World Health Organization, accessed January 5, 2024, https://www.who.int/news/item/29-03-2017-who-launches-global-effortto-halve-medication-related-errors-in-5-years.] medical professionals if there’s an issue. These devices can give you peace of mind knowing your loved one is in their normal state of health.
* *Assistive technology devices.* These can range from simple items like buttoning aids to help with dress shirts to high-tech devices like communication systems for individuals with severe speech impairments or telephones that convert your speech to text for the hard of hearing.
* *Video call services.* Platforms like Zoom, Skype, or FaceTime enable seniors to stay connected with their loved ones, which is especially important if they live far away or if in-person visits are not possible. There are many other technologies out there with the purpose of improving aging in place and reducing caregiver stress and worry. While not all will be appropriate for everyone, you can join my email list at https://www.KeepMomSafeAtHome.com to stay up to date with the latest and greatest technologies to make your life easier and reduce the stress of caring for an aging parent.

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Most Important Next Steps

1. *Conduct a Safety Assessment:* Start by reviewing the key safety concerns outlined in Chapter 2. Focus on identifying and addressing immediate risks in the home, such as trip hazards, poor lighting, and bathroom safety. This could involve simple fixes like securing rugs, installing grab bars, or improving lighting.
2. *Consult a Certified Aging in Place Specialist (CAPS):* Consider scheduling a consultation with a CAPS professional. They can provide expert advice tailored to your loved one’s specific needs and suggest modifications to enhance safety and accessibility in the home.
3. *Evaluate Home Modification Needs:* Based on the CAPS assessment and your own observations, list out potential modifications. Prioritize these changes based on their impact on safety and the ease of living for your loved one. This list may include installing ramps, modifying bathrooms for accessibility, or updating the kitchen for easier use.
4. *Consider Financial Options for Modifications:* Explore funding options for home modifications. This could involve looking into home equity lines of credit, reverse mortgages, or other financing methods if cash is not readily available. Weigh the costs of renovations against the potential savings compared to assisted living or skilled nursing facilities. If funds are tight, focus on the less expensive but high-impact changes first.
5. *Pros and Cons of Moving versus Renovating:* If your loved one’s current home requires significant modifications, weigh the pros and cons of renovating against moving to a new, more suitable home or a senior living community. Factor in emotional attachment to the current home, financial implications, and potential benefits of a home designed for aging in place.
6. *Leverage Technology for Added Safety:* Investigate and incorporate appropriate technology solutions that can assist in aging in place. This might include emergency response systems, health monitoring devices, smart home technologies, or telemedicine platforms, which can enhance safety and provide peace of mind.
7. *Maintain Open Communication:* Regularly discuss with your loved one their needs, preferences, and any challenges they face in their current living conditions. Their feedback is vital in ensuring the modifications truly serve their purpose.

In this chapter, we took a look at adapting a living space to meet the evolving needs of our aging loved ones and how modern technology offers safety and comfort for seniors at home. These innovations are not just about convenience. They’re about creating an environment where our loved ones can continue to live with dignity and independence. 

Thankfully, most people can make changes to improve their ability to age in place. Even small changes can have outsized returns in quality years spent at home to be enjoyed with friends and family. The important thing is to help your loved one begin making these changes now. Change can be difficult but it doesn’t have to be drastic immediately. Remember that creating an age-friendly home is not just about making physical adjustments. It’s a process that involves understanding, empathy, and a willingness to adapt to the changing needs of those we care for.

Whether it’s choosing to invest in home modifications, deciding to move to a new home better suited for aging in place, or integrating technology for added safety, each step taken is a stride toward ensuring a more comfortable, secure, and enjoyable quality of life for our elderly family members.

In the next chapter, we will discuss the lifestyle that will help set up our parents for success when aging in place. The goal is to keep them happy and healthy with the greatest chance to avoid a life-changing fall.

== Chapter 6: Promoting a Healthy Lifestyle for Aging in Place

In this chapter, we jump into the world of senior care and the critical components that ensure a high-quality life for our loved ones as they age in place. As the challenges of aging become more evident, the need for a well-rounded approach to care becomes necessary.

This chapter will explore the four pillars of a healthy lifestyle for the elderly, emphasizing their physical, mental, and emotional well-being. The benefits of physical activity, a balanced diet, social interaction, and conservation of energy will be discussed in this chapter. Actionable insights for caregivers will be provided. Also, practical examples and personalized strategies will be shared to equip caregivers with the tools they need to make informed decisions.

As we journey through this chapter, you’ll gain a comprehensive understanding of how to prioritize and facilitate your loved one’s unique needs, ensuring their well-being and happiness in their golden years.

One of my favorite stories about my mom’s parents came from my grandfather’s funeral. He had lived a great life. An amazing life really. He was the primary caregiver for my grandmother who had been needing more and more assistance around the house. Every day he would get up at 4 a.m., ride to the farm to check the cows, stop by the thriving business he founded, and then come back home at 10 a.m. to help my grandmother get up and get ready for the day.

This went on for years, until one day, he tripped leaving the local restaurant with two large shrimp and sweet potato plates. He landed on his side and could not get up. He was sure to save the shrimp and make sure they made it back home to his wife, even though he was being loaded on a stretcher and taken to the ER.

He had broken his hip. It required surgery and a rehab process that he just was not able to overcome. He passed away a few short months later.

Which brings me back to the story. At his funeral, people came from all over to pay their respects to my grandmother and their remaining descendants. About the fifth time someone looked at my grandmother and said, _Leah, we are just so sorry!_ she had enough. She looked right back at the unsuspecting well-wisher and said, _Why!?! He lived a good life! He was ninety! I am in such good health that I am afraid I am going to live longer than I want to!_

They have been very active and fortunate to live at home alone together until they were ninety years old. A large part of that is due to the active lifestyle they maintained well into their later years. Friends, community, and purpose also played a large role in their success aging in place. There are four pillars of a healthy aging-in-place lifestyle. They are exercise/activity, nutrition/diet, social interaction/community involvement, and energy conservation/lifestyle adaptation.

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Exercise and Activity: Building Strength and Mobility

We have all heard about the importance of exercise and keeping up physical activity levels for overall health. This should not be new information, but here are four statistics that show how beneficial exercise is for our geriatric population.

1. A review of the literature published in the Journal of Aging Research found that regular physical activity, even at moderate levels, can extend life expectancy by several years.
2. A systematic review published in Medicine (Baltimore) Journal of Aging and Physical Activity shows that adults aged sixty-five and above with higher levels of physical activity reduce overall risk of morbidity, mortality, and falling by 30–50%.
3. According to an analysis by the Alzheimer’s Society, adults over sixty-five who engage in regular physical activity can reduce their risk of developing dementia by about 28% and Alzheimer’s by 45%.footnote:[C. D. Reimers, G. Knapp, and A. K. Reimers, _Does Physical Activity Increase Life Expectancy? A Review of the Literature_, Journal of Aging Research 2012 (July 2012): 243958, https://doi.org/10.1155%2F2012%2F243958.]footnote:[Ewan Thomas, Guiseppe Battaglia, Antonino Patti, et al., _Physical activity programs for balance and fall prevention in elderly_, Medicine (Baltimore) 98, no. 27 (July 2019): e16218, https://doi.org/10.1097%2FMD.0000000000016218.]footnote:[_Physical activity and the risk of dementia_, Alzheimer’s Society, accessed January 5, 2024, https://www.alzheimers.org.uk/aboutdementia/managing-the-risk-of-dementia/reduce-your-risk-ofdementia/physical-activity#:~:text=Physical%20exercise%20to%20reduce%20dementia,studies%20into%20exercise%20and%20dementia.]
4. The Center for Disease Control (CDC) found that only 12% of adults aged sixty-five to seventy-four and 10% of adults seventy-five and over perform strength training exercises, despite evidence that strength training can help manage symptoms of many chronic diseases.

Those studies clearly show that exercise reduces fall risk, increases life expectancy, reduces risk of dementia, slows cognitive decline, and manages chronic diseases. With these kinds of obvious benefits, why wouldn’t the older population be exercising all the time?

But here is the tough question. Do you exercise regularly, even though you know you should? I know that it can be challenging to start a new exercise routine at any age. But the key is to overcome those challenges and just get started. So how can we help our loved ones overcome the perceived challenges to exercise?

* *Health issues:* It is quite likely that your loved one has many health concerns that may prevent them from feeling like they can exercise at all. The best way to get past this is a visit to their primary care physician for a yearly physical or check-up and ask if moderate exercise would be safe for your loved one. If there are actual health conditions that would make unsupervised physical activity unsafe, ask for a referral for physical therapy to begin exercising in a controlled and supervised environment.
* *Fear of injury:* This may be overcome similarly to health issues above by going to see the primary care providerfootnote:[_Strength Training Among Adults Aged >65 Years — United States, 2001_, MMWR, Centers for Disease Control and Prevention, January 22, 2004, https://www.cdc.gov/mmwr/preview/mmwrhtml/mm5302a1.htm.] and asking for a referral for PT to build confidence in exercise in a safe environment with an expert building your program.
* *Lack of energy:* This can be overcome with encouragement and group activity. A perceived lack of energy can be improved by building strength and endurance, which will increase your loved one’s vitality and energy levels. Exercising in the morning with others, e.g., walking groups, can help.
* *Mobility issues:* If your loved one has significant mobility issues, it is even more important to help them increase their activity level. Mobility issues tend to compound with decreased activity, increased weight, and further increased mobility issues. Start small and slowly build activity level. Exercise in a pool can be very helpful for these concerns as well.
* *Lack of motivation:* Sometimes explaining the statistics can help someone see the benefit. Another option is to group exercise with another enjoyable activity. Use friends, family, grandchildren, or even a reward or bribe to improve motivation.
* *Lack of knowledge:* If your loved one states they don’t know how to exercise, just start simple. Walking is a great moderate exercise. Increase total distance and time as they begin to show progress.
* *Psychological barriers:* Depression, anxiety, or feelings of hopelessness can be barriers to activity. Get a referral to a professional to work on these barriers. Physical exercise has been shown to improve these feelings and the overall outlook for the geriatric population.

Hopefully you will be able to show your loved one the benefits of activity and get them started on an exercise program. Small, consistent action will improve their health and ability to safely age in place. Exercising with your loved one can be a great way to enjoy each other’s company. An added benefit of exercise for caregivers is stress reduction.

When the responsibilities of life are piling up and you are running out of patience, go for a walk. Walking can help clear your head, get your blood pumping, and put you in a better position to take on the many challenges of life as a caregiver.

The best way to make sure that you and your loved one are exercising regularly is to schedule it. Make a commitment to each other to go for a twenty-to-thirty-minute walk three days per week. Set a time and make it routine. Soon it becomes a habit and an enjoyable part of the week.

Need ideas for exercise and activities to do with your loved one based on their ability? Refer to the Chapter 6 bonus content in the free handbook to find free copy with programs based on senior mobility levels.

Another way to improve overall activity levels is to incorporate activity into everyday routines. A few simple things you can do is park the car a little farther away or stand up and sit down five times during every commercial break of the television show you are watching together. You can also get creative and suggest a lap around the house after a trip to the restroom or see if your loved one can stand on one leg while doing the dishes. It is not hard to increase activity levels, but it requires intention and action. Again, the small steps make large changes possible when taken consistently over time.

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Nutrition and Diet: Supporting Health and Vitality

Eating is something we all do, and we often choose convenience over quality. This can be especially true for our seniors. Some may not have the energy or mobility required to go to the store and purchase whole foods let alone take the time to cook and prepare meals. But eating well is important for the quality of life of the elderly. A nutrient- and protein-rich diet supports healthy aging, forming and maintaining muscle mass, and brain and heart function.

Many adults and aging adults are metabolically bankrupt, leading to increased risk of chronic diseases such as diabetes, kidney disease, and cardiac disease. Food is also fuel for the body, and a poor diet leads to significant falls in energy levels. This can be a self-defeating cycle where our loved ones don’t have the energy to cook well and therefore choose the convenience of fast-food or a prepackaged meal. This meal is unlikely to be nutritious enough to boost energy levels and promote increased activity. The problem with convenience, especially with food preparation, is that it is often unhealthy food choices.

This section is not going to be browbeating related to only feeding our loved one whole foods, locally grown and reasonably seasoned. If diet and nutrition are important to you and you want to have a different conversation about it, let me know.

For now though, how do we make sure our loved ones are eating well enough without taking all of our time and energy? The answer is often to just be a little more conscious. Make sure they are getting some form of protein and drinking enough water. Try to reduce prepackaged or fast-food meals by one or two meals per week. This can make a significant difference with little effort. My wife and I try to make a soup or chicken salad on Sundays that can serve as lunches for the week. 

Those options can also be a great source of protein and water for our aging parents. The health risks associated with malnutrition are too detrimental to ignore. Helping our loved ones avoid this state is critical to maintaining health and function within their home. Some negative effects of malnutrition include the following:

* *Weakened immune system:* Malnutrition can lead to being more susceptible to infections and illnesses.
* *Decreased muscle mass and strength:* This can lead to increased frailty and risk of falls and fractures.
* *Poor wound healing:* When the body is malnourished, it doesn’t have the nutrients it needs to repair tissue and heal wounds.
* *Decreased organ function:* Long-term malnutrition can lead to decreased function in various organs, including the heart and lungs.
* *Increased risk of hospitalization:* Malnourished individuals often have longer hospital stays and are more at risk of complications.
* *Cognitive issues:* Malnutrition can contribute to cognitive issues like confusion and memory loss.
* *Increased risk of mortality:* Malnutrition can significantly increase the risk of mortality in older adults. Again, you don’t have to take on the burden of entirely fixing your parent’s diet. They would probably resist significant change anyway. It would be a good idea to have a conversation and to try to help them make small incremental changes in their diet if needed. When the conversation is framed about maintaining a high quality of life to have more energy and spend more time doing the things they love, they may be open to small but impactful changes in diet. Here is a list of six important nutrients for the elderly and why they are needed.
* *Protein:* Older adults actually need more protein than their younger counterparts. Protein helps maintain muscle mass, repair cells, and support the immune system. Good sources of protein can be found in meats, eggs, dairy products, legumes, nuts, and seeds.
* *Calcium and Vitamin D:* These are crucial for bone health. Dairy products and leafy green vegetables are good sources of calcium. Vitamin D can be obtained through exposure to sunlight and fatty fish.
* *Vitamin B12:* Many older adults don’t get enough vitamin B12, which is needed for creating red blood cells and maintaining nerve function. Animal products like meat, fish, and dairy are good sources of B12.
* *Fiber:* A diet high in fiber can help prevent constipation, lower cholesterol, control blood sugar, and help maintain a healthy weight. Foods high in fiber include whole grains, fruits, vegetables, beans, and nuts.
* *Potassium:* This nutrient is important for cell function and heart health. Many fruits, vegetables, beans, and dairy products contain potassium.
* *Omega-3 Fatty Acids:* These healthy fats can help reduce inflammation in the body and may lower the risk of chronic diseases like heart disease, cancer, and arthritis. Fish like salmon, mackerel, and tuna are high in omega-3s, as are flaxseeds and walnuts.

As you can see, diet and nutrition affect everything related to quality of life. If you want to improve the quality of life of your parents, have a conversation with them about small changes to their diet.

Also, make sure they are drinking enough water. It is unfortunately quite common for community-dwelling older adults to consciously reduce their water intake to reduce frequency of urination. This may be due to difficulty with mobility, risk of bladder accidents, or _convenience._ But whatever the reason, it is a bad idea. Poor hydration status increases the risk of many of the above side effects of malnutrition.

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Social Interaction and Community Engagement: Nourishing the Soul

One of the most unfortunate and unintended consequences of the pandemic lockdowns was the effect on mental health. It was a difficult time for the young and healthy, but the psychological effects on the elderly were most severe. Depression and anxiety appeared where they hadn’t been significant before. Dementia advanced faster as well due to people being shut in.

When we look at the negative effects of isolation, loneliness, and fear, the benefits of avoiding these conditions become more clear. Having a robust social network is very important to maintain a high quality of life while aging in place. This can be related to having a large family nearby, friends going through similar stages of life together, or neighbors in a retirement community. This allows for increased cognitive stimulation, which helps our loved ones stay sharp and reduces risk of depression and dementia.

Encourage your loved one to find ways to build and foster connections with others. It could be through community groups, clubs, or other activities. Regular contact with friends and family will also help reduce isolation. Encourage them to reach out to friends on a regular basis to check in and see how they are doing.

The same for families who do not live nearby or visit regularly. There are many easy-to-use video call technologies that can improve connection between distant people. It would likely be worth the time to set up or show them how to use one of these platforms.

Faith and spirituality play a large role in improving quality of life as well as mental health. While it doesn’t necessarily have to be religious, belief in something greater than yourself is healthy. There are often readymade communities in your area full of people in a similar situation to your loved one. Help them find these groups and encourage participation.

Volunteering in a cause you care about is another great way to find other like-minded people and foster growth of community. Help your loved one find a cause they care about to support. Volunteers are needed in nearly all organizations.

Another aspect of family and community is you as the caregiver. Remember to take the time to enjoy each other’s company and don’t make every visit or call about things that _have to get done._ Slow down a little bit and spend quality time together. That is the goal of aging in place anyway: more quality time outside of the medical system.

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Energy Conservation and Lifestyle Adaptations: Maximizing Independence

Energy conservation can be helpful to all of us at times but becomes especially important for our aging loved ones. To explain this concept, I like to use the example of the Peachtree Road Race in Atlanta, Georgia. It is the world’s largest 10K and takes place every July 4.

It is a really fun event that I would highly recommend for people of all skill sets, but it is hot and exhausting. As my wave approaches the starting line, the excitement and energy are building. It is easy to get sucked up in the excitement and start out running really fast (I used to do this). Think _run smarter, not harder._

But while the energy comes easy at the beginning, it comes with a price. It is much less efficient to run the first half mile quickly, because there are so many people. You wind up running around people and zig-zagging back and forth trying to get ahead of people you are faster than. This would be fine for a much shorter race or someone in better shape than I am, but I have learned this lesson the hard way in years past and had no energy left for the hardest part of the race — what the locals call Cardiac Hill.

Getting through the day can feel like running a 10K for our elderly loved ones. Especially those with medical conditions that make routine day-to-day activities challenging. We as caregivers have an opportunity to help them identify which parts of the day need the extra energy and try to save energy at times to reduce the risk of fatigue and exhaustion, which can lead to an increased risk of falls and injury.

As discussed earlier in this chapter, planned exercise is the best way to increase activity throughout the day. On days where exercise is prioritized, it is a good idea to exercise earlier in the day when energy levels are typically higher for the geriatric population. It might make sense to plan exercise days around other household chores to maximize energy levels.

Another way to help our loved ones is to do a weekly activity assessment with them. Refer to the Chapter 6 bonus content in the free handbook for a printable template for the weekly activity assessment. This is a way to plan for the week ahead and determine which events are likely to require increased amounts of energy so we can allow for periods of rest before and after these big events.

For example, if Mom will be traveling for a family reunion or a wedding, it may be a good idea to rest up for a couple of days before a big trip. If there is an event like going to the doctor, this can be a large energy expenditure based on their mobility levels. It would be a good idea to have a good meal and rest before heading to an appointment like that. Maybe even showering the evening before the appointment can reduce the energy burden prior to this event. If laundry is a task that uses a lot of energy for our loved one, it is a good idea to avoid this on a day when a large amount of cooking will be done. Another form of energy conservation is to use an assistive device such as a rollator in the home.

Even if your aging loved one is able to walk independently, carrying something uses significantly more energy as it throws off their normal balance by shifting their center of gravity. And if their center of gravity gets outside of their base of support, a fall is the result. An assistive device also increases the base of support, reducing overall fall risk. Using a rollator specifically to take a tray of food from the kitchen to the dining area, or to bring a laundry basket from the bedroom to the laundry room are good ideas for energy conservation.

When helping to make sure the home is as safe as possible for our loved ones, another form of energy conservation is to reduce the steps needed between tasks. Moving the laundry closer to the bathroom or bedroom could lead to a drastic decrease in energy expenditure for someone who has to climb twelve-plus stairs to get to their washing machine.

But a simpler way to complete this would be to pay attention to commonly used items and make sure they are easily accessible. For example, if a hair dryer is used daily, hanging it on a hook in the bathroom that is easily reachable would reduce energy cost versus storing it under the sink.

While our parents may be resistant to some of these suggestions, it can be critically important for them to maintain their level of independence and continue to age in place. If they did have a fall or a medical event that started this process of needing help, it can be helpful to gently remind them of that and encourage them to accept some small changes to avoid drastic change that can be the result of a fall or return to the hospital.

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Most Important Next Steps

1. *Exercise and Activity Planning:* Prioritize regular physical activity for your loved one. Start with simple exercises, ensuring they are safe and appropriate for their fitness level.
2. *Focus on Nutrition:* No need to hire a nutritionist or dietitian to craft the perfect diet. Taking small steps to reduce fast-food and prepackaged meals is a great first step. Be sure they are getting enough protein and water.
3. *Foster Social Connections:* Encourage your loved one to build and maintain social networks. Whether it’s through community groups, clubs, or regular interactions with friends and family, consistent social interaction can significantly reduce feelings of isolation and loneliness.
4. *Embrace Technology for Connection:* Invest time in setting up user-friendly video call platforms. This technology can bridge the distance between loved ones, ensuring that they remain connected, especially if physical visits aren’t always feasible.
5. *Encourage Spiritual Growth and Volunteering:* Regardless of religious affiliation, help your loved one find groups or communities that cater to their spiritual needs. Additionally, identifying volunteer opportunities that align with their passions can provide a sense of purpose and fulfillment.
6. *Implement Energy Conservation Strategies:* Utilize the weekly activity assessment template to strategically plan out the week. Identify activities that require significant energy, and ensure there’s sufficient rest before and after such events. Consider modifications in the home environment to make daily tasks more energy efficient, like using assistive devices.
7. *Embrace Small Changes:* Approach the care journey with patience and understanding. Instead of pushing for drastic changes, focus on introducing small, consistent improvements in their daily life. If there is resistance, kindly remind them of the benefits these changes offer in terms of safety and well-being.

As mentioned before, the map is not the territory. Each caregiver’s experience with their elder is going to be different. The goal is to help make slow changes that consistently improve quality of life while considering the individual and their preferences. The goal is not to force drastic lifestyle changes.

In the next chapter, we will discuss when to get our parents help. Either from a part-time or full-time caregiver. We also discuss how to implement this help to improve the quality of life of our loved ones.

== Chapter 7: Getting the Right Help at the Right Time

In the ever-evolving journey of caregiving, determining the precise moment when one should hire a full-time caregiver is impossible to know for sure. This chapter takes a good look into understanding when it may be the right time and presents insights into the challenges of in-home caregiving. We will explore the differentiating activities of daily living (ADLs) and instrumental activities of daily living (IADLs) and examine the hiring process and its financial implications. We’ll also understand the balance between promoting independence while ensuring necessary assistance. 

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Knowing When to Get Mom Help

Hopefully you found this book before your loved one had a medical emergency that brought them into the hospital system. Maybe you noticed Mom isn’t as sharp as she used to be. Or it could be that she experienced a fall without significant injury. Or it could be that you came home for Christmas and noticed that the house isn’t as well kept as it should be. If so, congratulations! Way to be proactive.

But if you are like 90-plus percent of people I have interacted with over the years, there was a significant medical event that led you to this point. In either case, the time to get help for your loved one is now. There is a reason you are thinking about this. If you have read this far, you have some significant worries or concerns for the safety of your loved one and their ability to age in place. That is normal.

The reason it seems so daunting or unknown is that you have not had to deal with this until now. Mom has always been independent, self-assured, capable of handling her day-to-day, and this has changed, or is changing. This is a challenging time for you as well as your loved one.

The good news is there is help if you are willing to accept it. Reading this book is the first step toward helping your loved one improve the quality and quantity of their remaining years. To set our loved ones up for success with aging in place, it is important to think about their long-term needs.

We have previously discussed navigating the healthcare system, setting up the home for aging in place and a healthy lifestyle to promote improved quality of life. Now we need to think about what is next as they age. This proactive approach helps us identify future needs and take small steps to be ready as their needs grow.

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Decreasing Senses

It is well known that our sense of sight, hearing, taste, touch, and smell decline as we age. This natural progression can lead to increased difficulty with aging in place.

Regular checks for vision and hearing can identify problems early and can be corrected. Decreased smell can be a problem during a fire or a gas leak; there are quite affordable options for smoke and carbon monoxide detectors to help with this. Be sure the batteries are still functioning once a quarter to reduce risk of the detector not working when needed.

The declining sense of touch or decreased sensation, especially in the feet can lead to burns if water temperature is too hot. It only takes two seconds of exposure to water that is 150 degrees to cause burns that require surgery. Keep the water heater set so that the water temperature is at 120 degrees or less to reduce the risk of significant injury. 

It is also important to check the water temperature regularly to make sure it is staying at a safe level. You can do this by turning the hot water faucet all the way on and holding a thermometer underneath. If it is over 120 degrees Fahrenheit, turn down the water heater.

Decreased hearing and vision can be the first sign of waning independence. This is often due to it no longer being safe for your loved one to drive. There are a few tests and assessments that can determine if they are still safe to drive. If they are not, another difficult conversation likely needs to be had. Like with accepting help at home, giving up driving will be resisted at first. It is often best to bring in a third party to assess the safety of driving and have the difficult conversation when necessary. Reach out to me if your loved one needs to be assessed for safety with driving, and I can get you connected with someone in the area who can help.

Another aspect of declining sensation is decreased feeling in the feet and proprioception in the joints. Both of these changes in sensation lead to an increased risk of falling due to less feedback from your body about where it is in space. When this happens, the elderly will generally rely more heavily on their eyesight to maintain their balance. 

Having someone around to mention the change in flooring or small step up into the laundry room can be a good reminder and reduce risk of falls. This is especially true when dealing with an open and unfamiliar environment.

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Mental Health Challenges in Aging

There are changes that happen in the brain with aging as well, which lead to a rise in the likelihood of depression, anxiety, and fear. Poor sleep, loneliness, isolation, and fear of death or dying can lead to these conditions. A consistent caregiver or trusted loved one goes a long way to reducing these issues and can promote improved quality of life with reduced symptoms of mental health challenges.

Below are some of the signs and symptoms of depression, anxiety, and fear.

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Depression:

* Persistent feelings of sadness or hopelessness
* Loss of interest in activities they once enjoyed
* Fatigue or decreased energy
* Difficulty concentrating or making decisions
* Changes in appetite or weight (either increase or decrease)
* Sleep disturbances (either insomnia or excessive sleeping)
* Aches or pains, headaches, cramps, or digestive problems without a clear physical cause that do not ease with treatment
* Recurrent thoughts of death or suicide

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Anxiety:

* Excessive worry or fear
* Avoiding social activities or places because of fear
* Problems with sleep (trouble falling asleep, staying asleep, or having restful sleep)
* Irritability or edginess
* Physical symptoms like headaches, stomachaches, or unexplained aches and pains
* Difficulty concentrating
* Rapid heart rate, shortness of breath, or dizziness
* Muscle tension

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Fear (often related to specific phobias or fear of falling, illness, or death):

* An extreme or irrational fear or aversion to something
* Feeling of dread or anticipation of the source of fear
* Rapid heartbeat or shortness of breath when thinking about or encountering the source of fear
* Avoidance behaviors

If you see an increase in these symptoms, it is important to seek help for your loved one. Some of these symptoms can be caused by medication or other conditions, so seeking out a professional will help to determine the cause and best course of treatment.

ADLs and IADLs ADLs and IADLs are the tasks required to manage day to day in the home. Examples of ADLs include the basics like dressing, eating, toileting, bathing, grooming, and mobility. IADLs are higherlevel tasks like managing finances, transportation or driving, and managing medication.

If your loved one only needs help with IADLs, part-time help from loved ones is usually sufficient to allow them to continue to age in place. If they need help daily with ADLs, bringing in more consistent help allows them to live safely at home. A skilled caregiver will be knowledgeable and trained in providing the assistance needed for ADLs and IADLs to manage the day-to-day tasks and challenges.

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Approaching the Topic with Mom

It is most likely that your loved one will resist a caregiver. They may see this as an admission that they are no longer capable of being independent and are returning to a childhood state of dependency. This is completely normal; anyone who is used to being independent will resist the feeling of having their agency to make decisions taken from them. So _do not suggest bringing in a nurse or caregiver!_

Framing is key when initiating the discussion to get Mom some help around the house. Have a conversation, but guide them to decide on their own that they could use some help with the more challenging tasks that take up their energy. Having an assistant a couple of hours a week to help with laundry, grocery shopping, or meal prep may give them more time to enjoy the finer things in life and be with family. The cost of a couple of hours of help should be reasonable.

Often, people will understand the need for help with light cleaning or housekeeping tasks. This can be a gentle way to introduce the process of our loved one’s accepting help within the home. As with anything else, the key to change is small, consistent steps taken regularly. Starting with an _assistant_ or _housekeeper_ a couple hours a week can help change their perspective and show that it is okay to accept help. This can smooth out the process for a time in the future when more assistance is needed.

Although you are aware of their need for assistance, they may not see it yet. Be careful not to point out their weaknesses and make them feel bad about their difficulties. When you see them struggling, give them a little space and then come back to the subject and ask if they could use a little assistance so they have more time and energy for something they really enjoy.

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Starting Small

Increasing the hours a caregiver is around can have many unintended positive benefits. These include increased companionship for the elderly and reduced worry for you! It can also mean less stressful _emergent_ situations where you have to stop what you are doing to run to the assistance of your mom. This alone should improve your quality of life as well and that of your parents.

When increasing the amount of time a paid in-home caregiver is around, there can often be a transition from one caregiver to two, or to an entirely new caregiver altogether. To ensure a smooth transition period, prepare your loved one for the change by discussing it a few times before it happens. It is also a good idea to sit down with your parent and the new caregiver to go through established routines, new routines, setting boundaries, and to build trust.

While the trust is being built, consider a weekly check-in meeting to talk through what is working and what is not. A little problem-solving on the front end can go a long way to reducing anger and resentment in the future.

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Understanding the Hiring Process

Once you have determined that your loved one needs additional help, the next step is to decide on the type of assistance needed. This means deciding between medical (CNA) or non-medical assistance (sitter). If your loved one does not need physical assistance to go from sitting to standing or hands-on assistance while walking to or going to the bathroom, non-medical assistance such as a sitter should be enough. This person can help with medication management, light cooking, and light housekeeping chores. They also often provide companionship as one of the more valuable parts of caring.

If your elder needs hands-on assistance with bathing, toileting, or walking, you are likely looking for a medical professional caregiver.

The next question to answer is do you want to go through an agency or make a private hire? There are pros and cons of both. Using an agency is often easier, and if the first caregiver doesn’t work out for some reason, switching to a new one is a relatively smooth process. Using an agency is usually more expensive though as they have already completed the hard work of finding quality caregivers who are trained or providing the training. Some agencies have both medical and non-medical caregivers. Reach out to a few and find out what type of care they can provide.

If you elect to go with the private hire route, the time and effort to find the right fit can be more extensive up front. Be sure to ask around for recommendations for a private caregiver and know their qualifications. Ask for references and call the references to get a better understanding of their abilities and how they relate to the geriatric population.

So how much does in-home care cost? Like with many other good questions, the answer is, it depends. Typical costs in Georgia range from $20 to $30 per hour based on location and amount of care needed. The sitters will be on the lower end of the range, and the skilled medical caregivers will tend to be toward the higher end of the range.

The best way to really determine what the cost is to call three to four agencies in your area and ask. They will likely do an assessment to make recommendations for the amount of care needed and often have different pricing structures based on consistency of care. If you plan to use a private hire caregiver, find a few of them and after an interview, ask them for their hourly rate.

I know this may seem like an unaffordable expense to some, but if it keeps your loved one safe at home without injury for even three extra months, it would be worth it. You would save $15,000 in three months versus a nursing home. If she were able to live safely at home for one additional year, the cost savings would be $60,000!

Here’s a quick breakdown of the calculation used to come up with those figures.

Average cost per month of a private room in an SNF in 2021: $8,900

$8,900 x 3 months = $26,700 for 3 months in an average nursing home with a private room

Home care for this exercise is assumed to be $30/hr for 30hrs/week = $900 per week

13 weeks(or 3 months) x $900/week = $11,700 spent on home care in 3 months

$26,700 – $11,700 = $15,000 saved at home during those 3 months

Over the course of a year, the total savings would be $60,000 or $5,000 per month!

As you can see, it is significantly more cost effective to assist our parents at home. That cost savings does not even include the benefits of improved quality of life and time with friends and family at home. And being able to maintain their routine and activities is just another added bonus. Hiring a caregiver should be looked at as an investment that will save money in the long run, but it also provides more of something that is truly scarce: quality time with our loved ones.

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Financing Home Care: Who Pays?

The first question most people ask is, _Does Medicare cover the cost of a caregiver?_ And the short answer is no, traditional Medicare does not pay for this service. But there is a chance your loved one could receive support from another provider or program. Some Medicare replacement plans will cover some things that Medicare does not. You would likely have to get on the phone, ask questions until you get ahold of a decision-maker, and then demonstrate the savings of the insurance provider paying for a caregiver versus the higher risk of a fall and broken hip.

Another option is long-term care insurance. Some of these policies include coverage for in-home care if the insured requires assistance with two or more ADLs or has a cognitive impairment. Contact the provider of your parent’s long-term care policy and find out what is covered and what is required to demonstrate the need for coverage.

The next options for assistance with paying for in-home care would be finding out if veteran’s benefits, if applicable, cover any of the costs. Even if only one parent served, benefits often extend to their spouse. Medicaid can cover some of the costs in Georgia if the patient qualifies, but every state is different, so check with your state’s Medicaid program. 

Community programs and nonprofits focused on seniors can also be a source for added benefits for community-dwelling older adults. Ask around and see what may be available in your area. If none of the above options work for you, refer back to Chapter 5.

Reverse mortgages and other options were discussed to fund home renovations needed for aging in place. Speaking to a fiduciary, fee-only financial planners can also be beneficial as there are strategies to maximize social security monthly income, especially if you have two parents approaching that age.

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Most Important Next Steps

1. *Assess Needs:* Examine the needs of your loved one, distinguishing between ADLs and IADLs to gauge the level of assistance required.
2. *Choose the Right Assistance:* Decide between medical (CNA) or non-medical assistance based on your elder’s requirements.
3. *Agency or Private:* Weigh the pros and cons of hiring through an agency versus a private caregiver. Ensure thorough vetting in either choice.
4. *Financial Planning:* Research the costs involved and look into potential avenues of financial assistance, including Medicare, long-term care insurance, or veterans benefits.
5. *Communication:* Engage in open dialogue with your loved one, ensuring they are part of the decision-making process and are comfortable with changes.
6. *Plan for Transitions:* If increasing caregiver hours or switching caregivers, ensure a smooth transition to maintain continuity and trust.

Embarking on the journey of caregiving requires an intricate blend of empathy, practicality, and foresight. Making the right choices for our aging loved ones isn’t just about ensuring their safety; it’s about enhancing their quality of life. By understanding their daily requirements, being financially savvy, and embracing technological advancements, caregivers can create an environment of love, respect, and independence.

Remember, the key lies in collaboration—treasure the shared moments, acknowledge the challenges, and always prioritize open communication. While it’s of paramount importance to ensure the best care for our loved ones, it’s equally crucial for caregivers to turn the gaze inwards.

In the next chapter, _The Essential Guide to Caregiver Self-Care_, we’ll dive into the importance of self-care and explore ways caregivers can rejuvenate themselves, ensuring that they can continue their journey with renewed energy and resilience.

== Chapter 8: The Essential Guide to Caregiver Self-Care

In this chapter, we look into the profound and multi-dimensional journey of the primary caregiver. It’s a role often thrust upon us without warning, requiring us to navigate a complicated maze of emotions, challenges, and responsibilities.

Here, we’ll explore the emotional spectrum a caregiver goes through, from guilt and resentment to compassion and fulfillment. We’ll touch upon the importance of self-awareness, the necessity of self-care, and offer strategies for managing the ever-evolving demands of caregiving.

As we unfold this journey, the chapter will provide you with not only a deeper understanding of your role but also actionable steps to make the process smoother and more rewarding.

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The Unintended Caregiver and Its Challenges

Most of us who become unintended caregivers do not have a transition period or a time to ramp up our assistance and slowly step away from other responsibilities. Instead, seemingly out of nowhere, there is an event and Mom needs help, lots of help. It is all new. Roles are reversed. You are caring for your parent and not the other way around.

This process is full of new responsibilities and many associated emotions. From anger, grief, fear, and anxiety, you will run through a wide assortment of emotions. This is normal, but not easy. I don’t know about you, but I never expected to be the primary caregiver for my mother at age thirty. I was just getting used to taking care of myself and my new wife. 

Three years into my career as a DPT, and it became apparent that my mother’s condition was deteriorating at a pace where my father could no longer provide all the care she needed. She had hospice care, but that was not enough. Twenty-two hours per day or more, someone needed to be there for my mom. To help her change positions, to eat, to brush her teeth, to administer medication, to be with her. Once the time came, my work was generally understanding, and I put in for time off with the _Family and Medical Leave Act_.

I was able to drive back home and be there for the foreseeable future to assist in my mom’s care. Thankfully, as a physical therapist, many of the skills I acquired in school and on the job were directly applicable to providing physical care for my mother. From proper positioning, bed mobility, donning and doffing clothes, as well as changing sheets and bedding, I had the physical tools. I even understood the medical system to a point that I helped my parents navigate it over the past few years.

There are three parts of dealing with a significant health event. The first is the knowledge to navigate the healthcare system. The second is the physical tools related to rehabilitation and mobility. And the third is the ability to handle the emotions and stress associated with this.

It occurred to me at some point during this process that I had two of the three parts necessary to make it through this experience. I had the knowledge of the medical system and physical therapy side of things.

It was still the most challenging time for me, and I only had to figure out one part of the three: the emotional burden and stress. I imagined all the people out there who don’t have a medical background or the expertise in geriatric mobility. They very likely have so many questions about day-to-day tactical things and what the next level of care will be like that they can’t really have time to deal with their own emotions. This has taken years to come full circle for me, but I can now help you with a general framework for navigating the healthcare system, and help with home safety and mobility following injury.

If those two pieces of the puzzle are reasonably well taken care of, you should have an opportunity to work on the third: caregiver self-care. You are likely very familiar with the challenges below that cause the need for self-care but may not have the time and resources to make self-care a priority.

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The Sandwich Generation: Pressures of Caring for Parents and Children

The term _sandwich generation_ refers to a group of people, typically in their thirties to fifties, who find themselves caring for their aging parents while also raising their own children. This creates a _sandwich_ effect, with the individual providing care for family members on both ends of the age spectrum. The sandwich generation is becoming increasingly prevalent due to societal trends of increased life expectancy and people having children later in life. 

Being part of the sandwich generation can come with a unique set of challenges. These individuals often face significant physical, emotional, and financial stress as they juggle the responsibilities of caring for older and younger family members simultaneously. This can include managing medical appointments and health issues for aging parents, supporting children in their educational and personal growth, and maintaining their own career, among other duties.

The mental and emotional toll of caring for your children and your parents at the same time is astronomical. Feelings of guilt, exhaustion, and stress are very prevalent in these overburdened caregivers. It is common to feel guilty when you are caring for your parents because you feel that you are neglecting your children, and vice versa. Add in work, spousal duties, and your own medical needs or appointments, and exhaustion is the only reasonable outcome. This stress compounds to the point that your medical condition, quality of sleep, and general wellbeing suffer. This leads to poor performance at work, strain on personal relationships, and mental health concerns like anxiety and depression.

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Tackling Caregiver Guilt: Acknowledging and Addressing Your Emotions

First step to getting rid of caregiver guilt is to recognize it. Do you feel like you should be doing more for your parents or your children but can’t because you just don’t have the time and energy? Do you miss appointments or postpone plans you have for yourself because of the chance that someone needs you? Are you concerned you don’t have the money or resources to care for your loved one? Do you feel like you aren’t good enough as a caregiver for those who need you?

This is caregiver guilt. It is a normal response to the situation you find yourself in. But just because it is normal does not mean that it is helpful. Your body and mind are in a constant state of low agitation because you are worried about something you can’t control. You have to take a step back. You cannot go on like this! You are on your way to a physical, mental, or emotional breakdown, and then you won’t be of service to anyone.

A well-worn analogy fits here related to the deploying of the oxygen mask when the pressure drops in an airplane. You have to put your mask on first before assisting children or anyone else with theirs. You are no good to anyone who needs you if you don’t have oxygen. The same is true for caregiving and mental bandwidth. There are definitely times when we will be running on fumes as caregivers and doing our best, but we have to recognize those times and stop.

Take some time for yourself to recharge. However that might be. Do a short meditation if that’s your thing. Or go for a walk outside alone for a few minutes. Whatever it takes. This is both true in the moment when tensions are boiling over as well as on a larger scale with all of life’s responsibilities weighing you down.

A good way to combat caregiver guilt is to seek out professional therapy or counseling. It can be quite helpful to get out of your own head and hear yourself saying some of these thoughts out loud. As soon as you hear them, you can begin to distance yourself from them because often you realize the absurdity of a thought like _I should be able to care for my mother twenty-four seven. What if she needs me and I’m not there?_

Journaling is another good option for getting thoughts out of your head and onto paper. I personally find that there is something liberating about writing in a journal. It is like I am able to release whatever was stuck in my mind, freeing up space for more important or helpful thoughts.

Another good practice is to set up boundaries and have realistic expectations about what you are able to do. For example, letting your parent know that they should not call after 9 p.m. unless it is an emergency. And if it is indeed an emergency, then CALL 911!

Another way to set boundaries is to make a pact with yourself to get your morning exercise in before checking calls, texts, or emails. This morning routine can set you up for success throughout the day and put you in a better frame of mind to tackle the challenges ahead. Self-compassion is another way to reduce caregiver guilt.

Here are some ways to include it in your daily routine.

1. *Mindfulness:* A form of meditation that allows you to watch your thoughts in a nonjudgmental way. I like the Headspace app for guided mindfulness meditations.
2. *Self-kindness:* Talk to yourself the same way you would a friend going through the same thing. We are so much harder on ourselves than we would be on a friend. You are doing the best you can, and that is enough. Allow yourself to make mistakes and know that everyone does.
3. *Normalize your experiences:* Know that there are many people out there going through something very similar right now and are having similar struggles.

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Seeking Support

The best way to normalize your experience is by sharing it with others who are going through similar situations. Look for local caregiver groups. The Athens Community Council on Aging has a monthly in-person caregiver support group near me. There is likely something similar in your area. Just google _caregiver support groups near me_ and see what pops up.

Another way to find a community is to join one of the many online communities. There are many Facebook groups dedicated to those caring for aging parents, including my _Keep Mom Safe At Home_ Facebook group. This is a great way to share your frustrations and get feedback and support.

Often, we as caregivers get stuck, and the only people we communicate with are the individuals we are caring for. This does not allow for a healthy outlet when stress or guilt builds.

One more thought on this topic. Once you find a monthly meetup, an online support group, or both, one way to take the community support further is to start a smaller group within the group. All you need is one to three other people who are willing to hop on a scheduled weekly call. This call is not about gossiping or excessive complaining, it is more about checking in with people who are going through the same thing as you and care about you.

Each week, you can run through a short script that mentions how things went for you last week and what you plan to work on or accomplish in the next week. This can be thirty minutes or less, but the weekly rhythm can reinforce positive changes in you as a caregiver.

An entirely different way to seek support is through respite care. Respite care is just a name for taking a break from caregiving and trusting the care of your loved one to another party. It could be for an afternoon so you can go to the spa, or for an entire week to take that much-needed vacation.

There are many companies out there that can provide these services. Even nursing homes can provide in-house respite care for up to a week, covered by Medicare under the hospice benefit if your loved one qualifies. Ask the other caregivers in your local meetup, online group, or weekly call to see if they have any ideas for utilizing respite care to recuperate after caring for your loved one.

Even if you can’t find an option covered by insurance or discounted through a local agency on aging, it is well worth the money to give yourself time to recharge because you will be better able to care for your loved one.

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Implementing Physical, Mental, and Spiritual Self-Care Practices

Books have been written on this topic, and I will likely write a book about it one day, so I’ll just hit the high points here. When I think about self-care for caregivers, there are three parts: physical, mental, and spiritual self-care. 

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Physical

Physical self-care can be broken down into three parts as well. Regular exercise, diet and nutrition (refer back to Chapter 6), and adequate rest. Regular exercise can be as simple as the exercise recommended for our loved ones aging in place. Get out and walk with them for twenty minutes if you can. Although, it may be more restful for your mind to exercise when they are not present. But ten to fifteen minutes of cardio daily can do wonders for you.

Exercise outdoors when you can. I especially like to go for a short run with the dog right at sunrise. Getting sunlight early in the day helps with circadian rhythms and will help you sleep better at night.

If daily exercise is too much, thirty to sixty minutes of cardio three times per week should be sufficient to improve your overall vascular system and health. You will also see improvements in mood and less brain fog. One thing I am trying to get better at myself is strength-building exercises. Lifting weights, climbing stairs, and body weight exercises like pushups and squats are good strength-building exercises. Muscle mass is inversely correlated to fall risk, so keep that in mind as you age.

Quality rest means getting enough high-quality sleep. The amount needed is different for everyone, but it is generally understood that more is better. Caffeine after 4 p.m. and more than a single alcoholic beverage in the evening both affect the quality of your sleep. Sleep is another area for a deep dive in a future blog post or book.

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Mental

Mental self-care is important to make sure you are in the right place between the ears. Meditation and journaling were mentioned previously and are great ways to practice calming the mind and reducing our reactiveness (or over-reactiveness).

It is rare for us as caregivers to respond in a snap to something our loved ones have done and have it be the perfect response. Often we can create regret or resentment when we react too quickly to something they are doing.

Meditation and journaling can both give you practice taking a brief pause between stimuli and reaction. This can reduce outbursts and allow us to be more thoughtful in our interactions.

Another thing we can do to improve our mental self-care is taking the time to reflect on what can be delegated to others to reduce our stress and caregiver burnout. Allowing others to take some responsibility will reduce your workload and decrease your stress levels. Think about who could help you, even if you pay for the assistance.

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Spiritual

Spiritual self-care is not that different from mental self-care. Meditation and journaling would fit right here in this section, but since they were included above, I’ll be more specific. Spiritual self-care does not have to be religious although it is for me.

Ways to incorporate spiritual self-care into the daily routine include finding ways to appreciate something larger than yourself. That can be found at the beach staring out into the ocean. Or in the mountains appreciating the grandness of God’s creation.

There is one thing though that is easy to implement and has been repeatedly shown to improve overall self-reported happiness, and that is a gratitude practice. It can be any variety of practices for which you find things to be grateful. I like to write down five things that I am grateful for every morning. This helps me get in the right mindset and begin the day looking at the blessings in my life and not focusing on the negative. You tend to find what you are looking for, so look for the positive in life and others.

[INFO]
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If you would like more information on the topic of caregiver selfcare, join my email list at https://www.KeepMomSafeAtHome.com.
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This is a topic I like to hit on frequently because if you don’t take care of yourself, you can’t effectively take care of your loved ones.

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Most Important Next Steps

1. *Self-Assessment:* Regularly evaluate your mental and emotional well-being. Recognize when you might be on the brink of burnout, and be proactive about seeking help or adjusting your caregiving routine.
2. *Seek Support:* Whether it’s joining a support group, confiding in a close friend, or seeking professional 115 counseling, ensure you have an outlet to express your feelings and challenges.
3. *Establish Boundaries:* Understand that saying no is not only okay, but it’s essential for your well-being. Prioritize tasks and learn to delegate when necessary.
4. *Time for Self-Care:* Dedicate specific times in your schedule for activities that you love and help you recharge. It could be as simple as reading a book, taking a walk, or practicing meditation.
5. *Ongoing Education:* Stay updated with the latest trends, technologies, and strategies for aging in place. Join relevant email lists, Facebook groups, attend workshops, or participate in webinars to ensure you’re equipped with the best information to aid your loved one.
6. *Reevaluate Regularly:* As circumstances change, regularly reassess the caregiving situation to ensure that the needs of your loved one, as well as your own, are being met adequately.

The role of a caregiver is one of depth and responsibility, marked by challenges but also moments of deep connection and love. This chapter has shown the many facets of this journey, emphasizing the importance of self-awareness and self-care. 

The road of caregiving is undeniably tough, but with the right tools, resources, and mindset, it can also be a very rewarding experience. Remember, in the act of caring for another, it is equally imperative to care for oneself. As we journey together through the various aspects of caregiving, it’s essential to consider all potential paths and scenarios. While our goal is often to keep our loved ones in familiar and comfortable surroundings for as long as possible, there might come a time when aging in place is no longer a feasible option.

In the next chapter, we will tackle this sensitive topic head-on, exploring signs that indicate a need for change, understanding the available alternatives, and ensuring that the transition is as smooth and compassionate as possible.

== Chapter 9: Aging in Place and Family Dynamics

In this chapter, we journey through one of the most intricate terrains of caregiving: the emotional dynamics and potential resistance from our elderly loved ones. It’s common for elderly individuals to resist changes, especially when it threatens their sense of independence. This resistance can strain the relationship between caregivers and their aging parents, making the caregiving process all the more challenging.

We will explore the root causes of such resistance, understand the perspective of the elderly, and provide strategies to cope with these challenging dynamics. Additionally, we touch upon the challenges of being a solo caregiver and navigate the complexities of caring for someone who might not have cared for you.

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Coping with Resistance from Aging Parents

Resistance to change from elderly parents is almost guaranteed, but they may be more agreeable or open to listening to the need for change in the immediate aftermath of an injury or hospitalization. The hospitalization is often a wakeup call, so it is important to make necessary changes during the time of rehab while medical care needs are still top of mind. Once your loved one gets back to their normal everyday routine, it is likely their resistance to change will increase.

Why does it seem like the elderly are often the most resistant to change? It should seem pretty straightforward. We all have our patterns and routines. It is how humans are designed to deal with a complex and ever-changing world. I know I can be resistant to change at times, and I can only imagine how set in my ways I will likely be in thirty-plus years. Good luck caring for me, Julie and Leah.

Imagine you own a business. A small local hardware store or grocery. You have been running this store for decades and getting by quite well, maybe even thriving for much of that time. You have plenty of customers who are happy and come visit every chance they get. It is a small but significant community.

One day, your cash register breaks and you are no longer able to go about running your business the same way. Everything stops. Your community dries up because you can’t sell them what they need anymore. It is depressing, and about the time reality is setting in that the business can’t operate like normal, someone shows up and starts telling you all the things you have been doing wrong for all these years. Now you’re dealing with a broken cash register and some know-it-all telling you what to do.

This is a similar situation to how your loved ones feel. Everything was fine, all was well until one day, BAM! Something happens, a medical emergency, and their whole world stops. And in their broken state, people who mean well arrive from all over the medical system as well as family telling them all the things they need to change. When you zoom out a little bit and look at the big picture, it is easy to see why they may show resistance to assistance.

There can be many fears and misconceptions about what change means. They may fear that it means they are losing their independence and agency. They may see it as their life passing before them or that if they accept any help now, it is a slippery slope having all freedom taken from them. They may have been given a diagnosis that does not have a good prognosis. They may recognize their memory is starting to fail them.

Dealing with the onset of a progressive degenerative disease can be devastating. Whatever the reason, if you are dealing with resistance from aging parents, it is important to try to put yourself in their shoes. Showing empathy can go a long way to breaking through the resistance to accept help.

You will also likely need patience and lots of it. Give your loved one time to come to terms with the changes that are occurring. Be prepared to have the same conversation more than once and to attack problems from different angles to find the best way to meet your loved one’s needs.

When discussing sensitive topics with resistant parents, active listening is a great tool to demonstrate to them that they are heard. Really listen to what they are saying. You may have to listen more intently than normal to find the emotional cause of their resistance. Repeat what you believe they are saying or feeling back to them to demonstrate understanding.

If you don’t have it yet, allow them another opportunity to get their point across. Problem-solving through resistance with gradual changes is often a good compromise. You know that you are making progress and your loved one doesn’t feel like everything is being taken from them at once. But slow progress needs to be consistent to make a difference.

Another way to help break through some of this resistance can be with trusted third parties such as physicians, therapists, or geriatric care managers. Suggesting changes often go over better from a professional with the expertise in the field versus coming from family.

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Handling the Solo Caregiver Burden

Being a solo caregiver is exhausting if not impossible to maintain for any significant length of time. There are many reasons one may wind up as a solo caregiver. Maybe you are an only child, the only surviving relative for someone without children, or it’s someone who outlived their children. Maybe you are one of many siblings, but due to location or some problematic family history, you are the only one willing or able to assist.

My grandparents on my mother’s side had two children. One was obviously my mom who passed away before they needed much care. That left my uncle as the primary caregiver and ultimate decision-maker. He had some help from his spouse and sons, but he mentioned a couple times how much easier this process would have been with my mother still alive. She was a nurse and was much better suited to caring for her parents. He did an amazing job, and we are forever thankful for the amount of care he was able to provide them. But it is easy to see how difficult it is and the emotional toll taken by being the solo caregiver.

On my dad’s side, my grandparents had four children. All very involved and supportive of my grandmother, but three of them live out of state. This left my uncle who remains in Mobile, Alabama, as the only day-to-day caregiver she had available before transitioning to an assisted living facility. It is helpful to my uncle that the other siblings remain involved and often take her to the beach or their homes for a week or longer. But even with this help, he likely felt like a solo caregiver most of the time.

The physical strain of being a solo caregiver can also be too much. As your parent begins to need help around the house or standing from a chair, it is natural to jump in and assist where we can. But as the assistance required grows, you are putting your own health at risk.

It is not helpful to risk your own health caring for a loved one. If you get injured, or medically depleted, you both will need help. And who is going to care for both of you if you were the solo caregiver previously?

There is often a financial strain associated with being a solo caregiver. Even if your loved one is able to meet their own needs financially or with outside assistance, it can still stress finances. Often, people are unable to work or be fully employed when caring for a loved one. The time and energy required as a caregiver often leaves little in the tank for revenue-generating activities for yourself.

One more component of the financial strain of solo caregiving is the stress and reduced time for yourself. This may manifest in poor food choices or a medical condition that further strains your finances. This would be a great time to revisit Chapter 8 about caregiver self-care.

Broadening your support group can play a significant role in reducing the stress associated with solo caregiving. Ask friends or church members for help occasionally. Get in caregiver support groups either locally or online. They are a great resource for other people on the same journey as you. You may have a problem that they have already solved and you would never know it if you don’t get around the right people and ask questions.

For example, other caregivers can tell you where to look for respite care or help you find an adult day center to get a few hours to take care of yourself. They can also let you know which caregiver companies they have used and trust. Maybe it’s a referral to a private caregiver who needs a new charge. 

Accepting that solo caregiving is hard if not impossible is the first step. Then look for ways to get help.

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Navigating Complex Emotional Dynamics: Caring for Someone Who Didn’t Care for You or Is Verbally Abusive or Threatening

You may be struggling with past emotional pain when caring for your parent. There can be years of baggage that all comes back up when your parent needs help. Emotional trials that you thought you were past can all come flooding back. There is no good way to ignore these feelings as bottling them up can lead to worse stress and a decline in your own health and well-being.

Acknowledging the pain and separating that from your present responsibility can help. Focus on the task at hand. Take it day by day and control what you can. If it is too much, seek help, find a professional you can speak to or a friend who can let you vent.

Setting boundaries is critical for navigating the challenging familial interactions. Let your parents know when they are being critical or demeaning. You can say, _That is not an appropriate way to speak to me, and I will not tolerate that kind of speech from you._ If they repeatedly cross that line, you have to put your foot down. Let them know that you will not be able to assist them further if they keep this up.

And stick to your word! If they are capable of understanding the hurtful words they are using and continue to interact this way, stop helping them. I know this seems harsh, but too many people put up with abusive relationships for way too long. If you are trying to help and the relationship becomes toxic, it is likely best for you both to walk away.

Often, the reasons for verbal abuse from the elderly is related to fear, confusion, or declining mental capacity like dementia. If this is the case, please don’t take the hurtful words to heart. They aren’t meant, and it is the progressive disease causing this behavior.

Get professional help when needed as it is important to be able to tell the difference between declining cognition and purposeful verbal abuse. If this is due to advancing dementia or something similar, it is likely time for them to transition to the next level of care as they are no longer safe at home. Involving a professional like a social worker and or a psychologist may be necessary.

But also you don’t have to care for your parents at all. If they are emotionally or physically abusive, you have every right to walk away. In fact, you should walk away. Your physical, mental, and emotional health is too important to be destroyed by the person you are trying to care for. If they don’t want your help and are abusive, WALK AWAY.

Help them find and hire another caregiver or transition to the next level of care, or if they are a danger to themselves, call Adult Protective Services (APS). While involving a government agency should be the last resort, sometimes it becomes necessary.

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When and How to Involve Adult Protective Services

Calling Adult Protective Services (APS) is a serious decision and should be made if you believe that the elderly individual’s safety is at risk. This could be due to a variety of reasons, such as physical, sexual, or emotional abuse by another individual, self-neglect due to refusal of care, or inability to take care of themselves. In the context of an elderly parent being verbally abusive and refusing care, calling APS may be necessary if the parent’s well-being is at risk due to self-neglect or if the caregiver’s mental health is severely impacted by the abusive behavior.

You can find the contact information for your local APS office by visiting the National Adult Protective Services Association website or through a quick internet search for _[Your State] Adult Protective Services_. To prepare for making a call to APS, you should do the following:

1. *Document everything:* Keep a record of incidents that have led you to believe that APS intervention is necessary. This could include dates, times, what was said or done, and any actions you took.
2. *Gather information:* Make sure you have all the necessary information about the person in question (full name, address, age, health condition, etc.), as well as details about the specific concerns you have.
3. *Know your rights and state laws:* Laws about elder abuse and APS procedures vary from state to state, so it’s a good idea to familiarize yourself with your local regulations.
4. *Prepare mentally:* Understand that this can be a difficult process, both emotionally and logistically. You might feel guilt, worry, or relief. It’s important to have your own support system in place and to take care of your own mental health during this time.

When making a call to APS, here’s what you can expect:

1. *Confidentiality:* Your identity will be kept confidential unless consent is given. However, keep in mind that sometimes the situation may make it clear to the person who made the call.
2. *Information gathering:* You will be asked to provide as much information as possible about the person in question and their situation. This includes their name, address, details about their condition, the nature of the abuse or neglect you suspect, and any other pertinent information.
3. *Investigation:* After the report is made, APS will investigate the claim. The time it takes can vary depending on the severity of the situation and the state’s specific regulations.
4. *Intervention:* If the claim is substantiated, APS will take steps to ensure the safety of the person involved. This can range from providing resources and services to the person in their home to moving them to a safer environment.

With any intervention by APS, the goal is to protect the safety and well-being of the person in question. Often to receive any immediate action by APS, the situation would have to be obviously unsafe. It can be frustrating to find out that the agent who assessed the situation did not see the same safety concerns that you see, but know that it is a very serious situation to have APS intervene.

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Most Important Next Steps

1. *Empathy and Patience:* Prioritize understanding and placing yourself in the shoes of your aging parent. This can go a long way in breaking through their resistance.
2. *Active Listening:* Engage in genuine conversations where you truly listen to their concerns, which will make them feel understood and valued.
3. *Gradual Changes:* Introduce modifications slowly and consistently, allowing your loved one to adjust to the new changes over time.
4. *Seek Third-Party Assistance:* Sometimes, advice from professionals such as doctors or geriatric care managers can be more palatable for the elderly than from family members.
5. *Self-Care:* Remember to take care of yourself. Join support groups or communities that offer advice, comfort, and shared experiences.
6. *Establish Boundaries:* If faced with a verbally abusive relationship, ensure you set clear boundaries. Let your loved one know which behaviors are unacceptable, and be prepared to uphold those boundaries.
7. *Know When to Seek Professional Help:* If the situation becomes untenable or if the safety of the elderly individual is at risk, consider getting Adult Protective Services involved.

Navigating the intricate dynamics of caregiving can often be an emotional rollercoaster. Understanding the fears, concerns, and apprehensions of our aging loved ones can provide a clearer perspective on their resistance and make caregiving a more harmonious journey. By combining empathy, patience, and appropriate boundaries, caregivers can create an environment that respects both their well-being and that of their loved one.

And when times get tough, seeking support, whether through communities or professionals, can provide the relief and guidance necessary to persevere. As we approach the final section, we will delve into the transition away from aging in place and preparing for end-of-life care. This ensures we provide the best possible support and comfort during the most delicate moments of our loved one’s life journey.

== PART III: LEAVING HOME

image::https://i.nostr.build/71E86kya5FHo2nHx.png[part 3, 300]

== Chapter 10: When Aging in Place Is No Longer an Option

In this chapter, we take a look into the multi-faceted decisions and considerations surrounding the choice of a long-term care facility for an aging loved one. From the practical aspects of facility visits and choosing the right care level, to the intricate nuances of long-term care insurance, this chapter is a comprehensive guide designed to ease the task ahead. 

Also, given the prevalent issue of dementia in our aging population, we dedicate a portion of this chapter to understanding its stages and offering tailored advice for caregivers supporting a loved one with dementia. When my grandfather moved into skilled nursing care following a hip fracture, it quickly became painfully clear to my grandmother’s primary caregivers that she was no longer safe at home. Everything was attempted to keep her safe at home until he returned home from rehab, but unfortunately, he would not make it home again. More and more visits from family were required to keep her safe. That was in addition to her full-time in-home caregiver.

Her mobility and memory were declining rapidly. She was more unsteady on her feet and would forget to use the rolling walker. Maybe she just decided she didn’t need it. She was requiring reminders to eat and regular reassurance that everything was taken care of. She was no longer safe at home without around-the-clock care.

Do you wonder if it is time for your loved one to move on to the next level of care? And if it isn’t yet that time, how will you know when it is?

Most people try to do everything they can to help their loved ones stay safe at home for as long as possible. And they wind up helping their loved one hang on at home longer than they probably should. That is not a criticism, but it is something I have seen time and time again. Caregivers run themselves ragged trying to keep Mom safe at home. Even past the point where it should be obvious.

Often it is due to feelings of guilt. Or being so caught up in the day-to-day that the big picture is overlooked.

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Signs It Is Time to Move

Physical signs that a move is imminent include declining mobility. This can be increased difficulty standing from a chair. It could require multiple attempts to get up, or they may need physical assistance.

Frequent falls is another sign. If your loved one is falling often, a serious fall and injury may be right around the corner.

Frequent or consistent bowel and bladder accidents. This is a sign that mobility is not good enough to get to the toilet in time, the sensation of needing to go has declined, or they are unable to effectively clean themselves.

Other physical signs include requiring assistance to eat, prepare food, or bathe. A need for help with any one of these things does not necessarily mean you should ship them off to a home immediately, but when the physical limitations start to add up, it can quickly become too much for a single caregiver.

Cognitive signs that your loved one may require more assistance than can be provided at home include worsening memory and increased confusion. Have you noticed them starting meals and forgetting that they were cooking? This is a huge fire hazard and may be fixed by unplugging the stove. But if they are also getting lost in familiar places, this is a sign of cognitive decline.

Another sign of decreasing mental capacity is an inability to follow directions or forgetting normal routines. People can continue to do well in their own home with some cognitive decline, but when it becomes advanced, or too much for the caregiver, it is time to consider the next level of care.

Emotional signs that continuing to live at home alone or with a caregiver is no longer the best option include increasing isolation. This may happen naturally as friends and family members pass away, but it has significant negative effects on the elderly.

Other emotional signs include depression and anxiety. Mood swings can be another sign that they are no longer able to process their dayto-day life and routine, and they may need more assistance than they can get at home.

We as caregivers tend to want the best for our loved ones, and often push ourselves beyond the breaking point to help them stay at home. This is rarely what is best for them and certainly not what is best for us. If we are stressed so much that it is affecting our health, cognition, and emotional well-being, it is time to get more help, and that means moving into long-term care.

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Dealing with Guilt: Making the Decision for Long-Term Care

There is often a feeling of guilt associated with the thought of putting our loved one in an assisted living facility or nursing home. We just assume the worst and think they will hate us for it. Sometimes we even feel like we are letting them down or betraying them in some way. Some of our parents will even tell us things like they will never forgive us, or they will write us out of the will. That sucks, and I’m sorry if they are making this decision harder on you. But if you have read this much of this book, you have done and are doing everything you possibly can for them.

You have to acknowledge your limitations. No one is perfect. You have to do what is best for you, your family, and your elderly charge. And at some point, that likely means it is time to find the right facility for your loved one. If you are consumed with guilt, go back to Chapter 8 on caregiver self-care. There are some practical ways to work through those feelings.

Also know this is a normal part of being human. Everyone deals with it. Find community and space to share your thoughts and feelings. Also know that while you feel bad about moving your loved one out of their home, it could be the best thing that has happened to them in a long time.

Take my grandmother, for instance. She had been at home alone, with a caregiver or family member for months after my grandfather fell and broke his leg. She was depressed, and as mentioned earlier, her mobility and cognition were declining rapidly. It was time to find her a facility.

My uncle found the perfect place about twenty-five minutes away from her home. He was eaten up with guilt but knew it was just too much for her at home. She moved to an assisted living facility. He moved some of my grandmother’s belongings into her new apartment to make it feel more like home, and she moved in. After she had been there a couple of weeks, I called to see how she was fitting in and getting along. The phone rang and rang. 

When she picked up the phone, there was a long period of time before anyone spoke. Well, it felt like a long time, it was maybe five seconds, and it was filled with uproarious laughter. Finally, when things calmed down enough for my grandmother to speak, she relayed what was so funny.

The phone had started ringing and she looked at each of the three friends she was with a bit irritated. She asked them each individually, _Well, are you going to pick up your phone?_ The phone was in the basket of her rollator. She was apparently not used to having her phone there and was a bit embarrassed to find out it was her phone that was ringing the whole time.

While slightly embarrassing for her, it was very clear to me that not only was she getting to know people and making friends, but she was also choosing to use the rollator that we have been trying to get her to use at home for months. Making friends with others who were using the assistive device normalized it for her, and she now takes it everywhere. 

Another benefit that I noticed was improved cognitive function. She had a bit more recall and was able to better follow the conversation than she had been previously while home alone for a couple of months. Being around others and being less sedentary helped her cognition.

At home, she would sit in a dark room by herself with very little activity. Now she is out and about the facility a bit more. For whatever reason, I have repeatedly seen that cognition and mobility seem to go hand in hand after a certain age. At home she was isolated and had little reason to walk, so her mobility and cognition seemed to be declining together. While this is anecdotal evidence, it does seem that she is more mobile and her cognition has equalized as well.

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Levels of Care

There are four levels of care available for your loved one as they reach the point of moving out of their home permanently. Understanding the differences is a key component of finding the right care for your parent.

* *Independent living facility:* Also known as retirement communities or senior apartments. This is the lowest level of care and is more like an apartment or cottage in a senior living community. Here, people come and go as they please with many of the community members still driving. They are designed for seniors who are generally healthy, active, and able to live on their own. These facilities typically offer private apartments or houses designed with senior-friendly features. They also provide various amenities such as meal services, housekeeping, laundry services, recreational activities, fitness centers, and transportation for shopping or medical appointments. The main idea is to free seniors from the burden of home maintenance and provide opportunities for socialization.
* *Assisted living facility:* Assisted living facilities are a step up from independent living facilities in terms of the level of care provided. They are meant for seniors who need help with some daily activities such as bathing, dressing, eating, or medication management but do not require intensive medical care. These facilities offer private or semi-private living spaces, communal dining, and a range of social and recreational activities. Services typically include twenty-four-hour supervision and security, personal care assistance, health monitoring, and emergency call systems.
* *Memory care unit:* Usually located within assisted living or nursing home facilities, they provide specialized care for individuals with Alzheimer’s disease, dementia, or other cognitive impairments. These units have staff specially trained to assist with the unique challenges that come with memory loss. The environment is designed to be secure and easy to navigate, with activities tailored to promote cognitive function and social interaction. Memory care units provide a higher level of supervision and care compared to regular assisted living.
* *Skilled nursing facility:* You may remember SNFs from Chapter 2 about short-term rehab. This is the sub-acute setting, as a stop between the hospital and home. They are often referred to as nursing homes, and they offer the highest level of care outside of a hospital. They provide twenty-four-hour supervised care with nurses, physical therapists, occupational therapists, and speech therapists. Individuals in these facilities generally cannot live on their own or require round-the-clock care due to chronic illness, healing from surgery, or need for rehabilitative therapies. Skilled nursing facilities offer both short-term and long-term care options and are equipped to handle more complex medical needs.

There are also facilities that have each of these options under one roof, or on the same campus. This is a good idea because it makes transitioning to the next level of care easy for your loved one. It turns out to be quite convenient for family members, but there can be a stigma about people who require a step up in care. The folks in independent living will gossip about someone who had to go to the assisted living side. This is true of transitioning from assisted living to either memory care or skilled nursing as well.

While it may not seem like a big deal, it can lead to residents resisting the step to the next level of care. This can prevent your loved one from getting the assistance they need and increase their risk of injury as they try to hold onto their independence.

It’s important to note that the level of care, cost, and services provided can vary greatly from one facility to another, so it’s necessary to do thorough research and visit potential facilities when deciding. It is also essential to consider the personal needs, health status, and preferences of the individual who will be living in the facility.

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Seeking Advice

When making this decision, it can be helpful to find people who work with the geriatric population and are very familiar with identifying their needs and the right level of care. Check with your local agency on aging and see if they have any recommendations. Oftentimes, they can refer you to someone who can help in this situation.

Another option would be to ask healthcare providers who work with a geriatric population. If you have any friends or family who work in eldercare, they may be able to help or connect you with resources. If your loved one receives home health physical or occupational therapy, ask the therapist who works with your parent. They will likely be able to give you a good idea of which level of care would be most appropriate based on functional status, mobility, and cognition.

A third option is eldercare locator services. They are in place to help with this transition as well as to provide options available for your loved one’s situation. It is a public service offered by the US Administration on Aging. Their website is: https://eldercare.acl.gov/Public/Index.aspx or you can reach them by telephone at 1-800-677-1116.

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Choosing a Long-Term Care Facility: What to Look For and Questions to Ask

Once the appropriate level of care has been identified, it is time to choose the right facility for your loved one. Important things to consider are location, cost, and services provided. It is important to tour each location being considered. Refer to the process for finding a short-term rehabilitation facility in Chapter 2.

Use this as a guide for choosing a long-term care facility, but know that the importance of each aspect may be different this time around. For example, location may be the most important factor for long-term care. This could be for proximity to friends and family or allow for continued care under her current physicians. Or staffing ratios could be the most important now that this is for long-term care.

You should ask the same questions at each facility and make a few notes to compare the answers provided. Each facility will be different, so it may be beneficial to create a pros and cons list if one option does not stand out as the best choice. With the aging baby boomer population, elder care has been a big focus of all healthcare for the past decade or more. This has led to significant improvements and increased options available for elder care. One important note is to compare like to like. It would not be fair to compare a SNF to an ALF, for example.

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Understanding Long-Term Care Insurance

Long-term care insurance is a type of insurance designed to cover the costs of long-term care. This may seem obvious, but it should cover services that are not typically provided by traditional health insurance or Medicare. It’s important to pay attention to the specifics of what is covered as the payment policies can vary greatly depending on the specific insurance plan.

Generally, long-term care insurance may cover the following services and facilities:

* *In-Home Care:* This includes assistance with activities of daily living (ADLs) such as bathing, dressing, meal preparation, and medication management.
* *Assisted Living Facilities:* These are housing arrangements for seniors who require assistance with ADLs but do not need the round-the-clock medical care provided by a nursing home.
* *Adult Day Care Centers:* These facilities offer social and health services for seniors during the daytime hours, providing respite for caregivers.
* *Skilled Nursing Facilities:* These provide round-theclock skilled nursing care for those who have serious health conditions or disabilities that require constant care.
* *Memory Care Units:* These specialized units in assisted living facilities or nursing homes cater to people with Alzheimer’s disease or other types of dementia.
* *Respite Care:* Short-term relief for caregivers.
* *Hospice Care:* Support services for those in the end stages of terminal illness (discussed more in Chapter 11).

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Payment Policies and Limitations

Long-term care insurance policies usually pay benefits based on a daily or monthly maximum amount. They could also have a maximum lifetime benefit amount. These maximums may be adjusted based on the cost of living over time.

Many policies are _expense-incurred_ policies. The insurer pays for actual services up to the policy’s daily or monthly maximum.

Another type is an _indemnity_ or _per diem_ policy, which pays a set amount per day regardless of the actual expenses. 

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Exclusions and Waiting Periods

Exclusions are conditions or situations where the insurance will not provide coverage. For example, many long-term care insurance policies do not cover treatment for mental or nervous disorders, alcohol or drug addiction, or illness or injury caused by an act of war.

Other exclusions may include treatment in a government facility or for a condition covered by workers’ compensation or Medicare. Waiting periods, also known as elimination periods, are the amount of time that must pass after filing a claim before the policy begins to pay out benefits. This could range from zero to one hundred days, and you’re generally responsible for all costs during this period.

A longer waiting period can lower the premium, but it also means that you’ll need to cover more of the initial cost out-of-pocket. Ask plenty of clarifying questions before purchasing a longterm care insurance policy. Consulting with a trusted insurance professional or financial adviser can be helpful to navigate this complex decision.

The monthly premium or cost of a long-term care insurance policy is going to vary with factors like age, health status, and coverage amount. It may be past the time that your loved one would benefit from purchasing a policy. But it could be quite helpful to have a policy for other family members, or even yourself in the future.

Even with a long-term care policy in place, you may still incur out-of-pocket expenses, so it is important to know what is covered and find any gaps in coverage that remain. Purchasing long-term care insurance is usually recommended in your fifties or sixties. This is usually when people are still in good health and can qualify for a cheaper premium. But you are close enough to potentially needing to use the insurance to make it worthwhile. Purchasing in your thirties or forties is seen as too soon. You risk paying for decades longer than needed.

Once you lock in your premium with a long-term care policy, the premiums will not increase based on your increasing age. But sometimes premiums increase for other reasons. Be sure to ask about what could cause an increase in premium. 

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Navigating Dementia: Special Considerations for Long-Term Care

Dementia deserves its own course or book, but it is important to touch on it here. Dementia is a broad term for declining mental capacity that interferes with daily life. It is usually first identified by declining memory and can progress to changes in thinking and behaviors.

Alzheimer’s disease is the most common type of dementia. There are seven stages of dementia as classified in the Global Deterioration Scale (GDS):

1. *No cognitive decline (normal functioning):* At this stage, there are no noticeable signs of dementia, and individuals can function independently.
2. *Very mild cognitive decline (age-related changes):* This stage is associated with normal forgetfulness related to aging, such as forgetting names and where familiar objects were left. It’s usually undetectable to medical professionals, and the person’s ability to work or live independently is not affected.
3. *Mild cognitive decline (early Alzheimer’s/mild cognitive impairment):* This stage includes increased forgetfulness, slight difficulty concentrating, and decreased work performance. People may get lost more frequently or have difficulty finding the right words. At this stage, a person’s difficulties may be noticeable to family members, but the individual may still be able to carry out normal activities and social interactions.
4. *Moderate cognitive decline (mild dementia):* This stage includes difficulty with simple arithmetic, poor short-term memory (may not recall what they ate for breakfast, for example), and inability to manage finances and perform complex tasks. Individuals may be in denial about their symptoms and start withdrawing from social interactions. 
5. *Moderately severe cognitive decline (moderate dementia):* During this stage, people may need assistance with daily tasks, such as dressing and bathing. They may also suffer significant confusion or memory loss and may not remember details like their address or phone number.
6. *Severe cognitive decline (moderately severe dementia):* Memory continues to worsen, personality changes may occur, and people may need extensive help with daily activities. Individuals might forget the name of their spouse or caregiver, but usually still remember themselves and some details about their past.
7. *Very severe cognitive decline (severe dementia):* In the final stage, individuals may lose the ability to communicate or respond to their environment. They may fail to recognize loved ones and have difficulty with motor functions. Total care is required at this point for hygiene and safety.

The first three stages are not that different from ordinary aging. The progressive decline may occur in someone younger than average, but with a little help and lists/reminders, people can usually live their lives and complete daily routines in a fairly normal fashion.

Once progression to stage four occurs, your loved one will require assistance with IADLs such as driving and managing finances and medication. This assistance can usually be provided at home with some additional hours of care from you or a paid caregiver.

Progression to stage five is going to require assistance with basic ADLs. This would include dressing, grooming, eating, and bathing. This level will likely require full-time care. It can be provided at home or in a memory care unit of an assisted living facility.

Behaviors are important to watch here. If your loved one grows combative or begins wandering significantly, it may be time to look into that memory care unit. Once your loved one has transitioned to memory care, maintaining regular visits and communication is important. Your familiar voice and face will help ease the transition to a new location for your parent. Regular visits make sure your loved one is well cared for and allows you to advocate for their needs and preferences.

Dementia is a progressive disease, and there is currently no cure. It is very hard to watch a loved one slowly lose their mental capacity. It brings up significant questions about our own future and health. Caregiver self-care is important to help us deal with the challenges our loved ones are facing. Refer to Chapter 8 for a deeper dive into this topic.

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Most Important Next Steps

1. *Facility Visits:* Tour multiple long-term care facilities to gain firsthand insights into their environments, staffresident interactions, and cleanliness.
2. *Detailed Inquiry:* At each facility, ask about staffing ratios, available activities, emergency protocols, and resident care plan updates to ensure a consistent level of care.
3. *Insurance Consultation:* Before purchasing longterm care insurance, consult with a trusted insurance professional or financial adviser to understand the specifics, exclusions, and potential waiting periods.
4. *Understand Dementia Progression:* Familiarize yourself with the Global Deterioration Scale to recognize the stage of dementia your loved one may be in and to anticipate their evolving needs.
5. *Plan for Memory Care:* Anticipate the potential need for transitioning your loved one to a memory care unit or facility, especially if combative behavior or significant wandering becomes apparent.

The journey of selecting a long-term care facility for a loved one is neither simple nor linear. It requires careful consideration, diligent research, and often, challenging decision-making. Yet, with the right knowledge and support, it is a journey that can be navigated with confidence and compassion.

Remember, while this path is filled with complexities, you are not alone. Embrace each step with patience, seek support when needed, and cherish the moments of connection along the way.

As we move to Chapter 11, we will take a look at end-of-life care. The role of advanced directives, what to expect with hospice care, and the process after death. This chapter is not just about preparing for the end but enriching the quality of every moment we have with our loved ones. It is about ensuring our care encompasses the physical, emotional, and spiritual well-being of our loved ones.

== Chapter 11: A Caregiver’s Guide to Death and Dying

In this crucial chapter, we take a look into the profound journey of end-of-life care. From confronting the sometimes-overwhelming realization of our loved ones nearing their end, to understanding the importance of preparing and having critical documents in place, this chapter seeks to guide caregivers through this emotionally taxing period.

We will introduce you to the roles of various professionals like hospice caregivers and bereavement navigators, shed light on the intricacies of managing the aftermath of a loved one’s passing, and provide insights into the winding paths of grief and acceptance. It is a comprehensive look at preparing, dealing, and healing during this final caregiving phase. 

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Understanding and Preparing for End-of-Life Care

End-of-life care can refer to the physical care a person needs as they near the end, but it also should include some planning for this near-death stage before the time has come. Advanced directives are documents that should be prepared ahead of time to clearly state the wishes and desires of your loved one and to give someone other than them the power to make decisions if they are unable to make them independently.

It seems to be part of the human condition that no one wants to think about the end. We put things off and act like our loved ones will never die. We know this is obviously false, but that is the normal way to handle things. We have to break out of this failed line of thinking. It is important to get things in order, to honor our loved ones by knowing their wishes and respecting them. Things get overlooked and mixed up when legal documentation does not make these things clear. 

There is no easy way to have the discussion about end-of-life care. Bring the topic up and let your parent know that there are a few items that need to be discussed. This may take them by surprise, so give them some time to let it sink in.

Let them know that a living will and a healthcare proxy or a durable power of attorney for healthcare will be needed. Also provide the option for them to write down their responses. If they choose to write instead of talk, provide a framework of questions for them to answer.

When they are ready, they will need to write down their decisions. If they are unable to do so, someone can write it for them and have it notarized. This allows your loved one to clarify their wishes so everyone can understand them.

This may be a difficult and dark conversation. The good news is once the decisions have been made, they do not have to be readdressed very often. Although it is a good idea to check back in yearly and confirm their wishes are still the same. 

This process will likely bring up uncomfortable feelings and emotions in you as well. This is normal. It may be a good idea to plan some caregiver self-care time following this conversation. This will allow you a little space to process the difficult time ahead. It will also help you to appreciate the time you have remaining.

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Living Will and Power of Attorney

I don’t know about you, but most of the elderly folks I deal with on a regular basis are quite particular about certain things. One of the most particular was a lady we will call Fae who I had the opportunity of working with a few times over the years. She would have a decline in function and require skilled physical therapy services to get back to walking and getting around like she desired.

She was generally willing to participate with PT on the condition that she could bring her cup of water. Well, many conditions actually, but all related to her cup of water. This cup required its own special place at a table beside her wheelchair. Before walking, she would stand up and take a sip of the water. Not unreasonable. But instead of swallowing the water, she would hold it in her mouth the entire time she was walking. She would reach her destination, swallow, and sit down. After attempted education related to aspiration went nowhere, this became part of our routine for therapy. 

Then, one day in my haste to get therapy going, I knocked over the table her precious cup of water was sitting on. She screamed out like she had been assaulted and wouldn’t speak to me or work with me for a week! Eventually we worked things out and were able to resume therapy services with the understanding that I was not to come anywhere near her cup of water again.

Not everyone is that particular about everything, but it is important to understand the wishes and desires of our loved ones. Get them written down in a legal document and make sure there is someone in place to see that those wishes are followed. A living will is a legal document that specifies the desires of someone if they are unable to communicate their wishes on their own.

It is primarily for end-of-life medical care and should include decisions about life-prolonging measures such as artificial respiration or intravenous hydration. It should also include decisions about pain management and organ donation.

This document only goes into effect when your loved one is terminally ill or permanently unconscious and cannot communicate their wishes. A durable power of attorney for healthcare (POA) or a healthcare proxy is a directive that gives power to the _agent_ or caregiver to make healthcare decisions for the _principal_, your loved one, in the event they are unable to do so. This is a large responsibility, and it’s not for everyone. Consider this before accepting the role.

These directives are designed to offer clarity for the medical team caring for your loved one and to reduce the bickering and infighting that can often be associated with families struggling to cope with the pending loss of a loved one.

There are many services that will draw up a living will and POA for you to simplify this process. A quick internet search of _living will in Georgia_, for example, will provide you with numerous options. You can also ask friends and family if and how they had a living will drawn up.

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The Role of Hospice Care

Hospice care is end-of-life care for our loved ones. The goal is to improve the quality of life for our loved one as they are dying. Reducing pain and stress are the main goals. Lifesaving or prolonging measures are no longer utilized while under hospice care.

Hospice care is recommended when it is thought that your loved one is in the last six months of their life, and a physician will have to sign off on this being the case. This may be due to age and debility, an incurable disease, or other medical conditions.

Hospice can be provided in their home, hospital, long-term acute care, a skilled nursing facility, or in a hospice center. The hospice team includes doctors, nurses, home health aides, social workers, clergy or other spiritual counselors, trained volunteers, and speech, physical, and occupational therapists if needed. This interdisciplinary team works to manage the patient’s pain and symptoms and assist with the emotional, psychosocial, and spiritual aspects of dying. The team also coaches the family on how to care for the patient and provides bereavement counseling to the family.

It’s important to note that the focus of hospice is on caring, not curing. This means the goal is to make the patient comfortable and ease their symptoms, rather than trying to cure the underlying disease. So if needed, the physical therapist would focus on positioning to reduce pain and skin breakdown. Education of family for techniques to prevent injury of caregivers would also likely be beneficial. The therapy would not be focused on improving mobility or return to function.

The core philosophy of hospice care is to affirm life and regard dying as a normal process while offering a holistic approach to treatment. That includes support for the patient’s physical, emotional, and spiritual needs.

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When is it time for hospice care?

The answer is, it is hard to know. It often feels like accepting hospice is a death sentence for our loved ones, and we tend to avoid it longer than maybe we should. When the medical care necessary to try to help your loved one return to function or health isn’t working or your loved one expresses a desire to stop the seemingly endless medical interventions, it may be time to consider hospice.

Hospice care should not be taken lightly, and you and your loved one should take time to consider the outcomes, but there is a time and a place for hospice care. When my mother reached the point that hospice was necessary, they provided hospice services in our home. A hospital bed and bedside commode were delivered, and a nurse came to the house to do the initial assessment. Pain management medication was provided as well as other things to make her more comfortable. She received a visit from the nurse and home care aide a couple of times per week initially, and then more frequently as her condition became worse.

The aides were very helpful for changing, bathing, and positioning, but even when they were coming daily, there were still twenty-three hours per day that they were not present. We were not needed every minute of every hour since she slept a lot, but we were needed consistently and often throughout a twenty-four-hour period for repositioning, changing, feeding, tooth brushing, grooming, and comforting. Having the hospice team involved was very helpful, and it takes a special group of people to care for the dying.

The team we worked with genuinely cared for my mother, and a few came to her funeral. It was much-needed help during a very challenging time for our family.

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The Process After Death

Bereavement navigators, often part of the hospice team, are professionals trained in guiding families through the practical and emotional complexities following the death of a loved one. They can provide guidance, support, and necessary resources. Their roles often include offering grief counseling, assisting with paperwork, providing resources for dealing with the estate and funerals, and helping families understand and navigate the mourning process.

Bereavement navigators provide ongoing support. Depending on the individual or family needs, this can range from a few months to over a year after the death. The first action to take after the passing of a loved one typically includes notifying family and friends. Bereavement navigators can offer guidance on how to share the news and support you during this difficult time.

Critical institutions such as life insurance companies, banks, and social security need to be notified as well. This can be an overwhelming task, but a bereavement navigator can help prioritize these tasks and provide guidance on what to say and the documentation needed. Depending on the deceased’s wishes or cultural practices, arrangements for organ or body donation may need immediate attention.

Next up is funeral and memorial services planning. Bereavement navigators can provide valuable support in planning a funeral or memorial service. From understanding the deceased’s wishes, if known, to providing options and contacts for funeral homes, to supporting the family in making decisions about the service. They can also assist with understanding the costs associated with various options and help with paperwork related to funeral arrangements.

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Handling the Estate and Legal Matters

After the funeral, attention turns to settling the deceased’s estate, which can involve probate (the legal process of transferring assets), executing the will, or dealing with any debts left behind. Navigators can provide resources and referrals for legal assistance and help families understand this process.

Navigators also assist in identifying and contacting relevant organizations and institutions (like banks, insurance companies, utility providers, and landlords) to close accounts or transfer services.

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Navigating Grief and Moving Forward

If help is needed with emotional support and coping, bereavement navigators are trained to provide emotional support and help people navigate their grief. They can help families understand the range of emotions they might experience, from sadness and anger to guilt and relief, and reassure them that these are normal parts of the grieving process. They can provide resources for further support, such as recommending grief counselors, therapists, or support groups for ongoing assistance.

Some navigators can also offer strategies for self-care and coping mechanisms, and help families find ways to remember and honor their loved one. It’s essential to understand that every person’s grief is unique, and there’s no right or wrong way to grieve.

Bereavement navigators can help you navigate your unique journey through loss and bereavement. The widely accepted five stages of grief are denial, anger, bargaining, depression, and acceptance. These stages don’t necessarily occur in order, and some people might not experience all of them.

* *Denial is a defense mechanism* that buffers the immediate shock of the loss, carrying us through the first wave of pain.
* *Anger might be directed toward oneself*, others, or higher powers, questioning the fairness of the loss.
* *Bargaining often involves _if only_ statements*, imagining different scenarios where the loved one could have survived.
* *Depression is a deeply personal stage*, representing the emptiness we feel when we begin to accept the loss.
* *Acceptance is not about being okay with the loss* but rather acknowledging the reality and trying to move forward. 

Grief can also be complicated. If it becomes a chronic and debilitating form of grief, it may require professional help. Healthy grieving involves giving yourself permission to feel and express the full range of emotions associated with the loss, without judgment or guilt. It’s about seeking out others who can offer support, such as friends, family, or support groups.

Remember, it’s okay to laugh and find moments of joy amid the grief. Engaging in self-care is essential—maintaining a balanced diet, exercising regularly, ensuring adequate sleep, and avoiding alcohol or drugs, which can intensify feelings of despair.

Be aware of the signs that suggest the need for professional help, such as persistent feelings of hopelessness, difficulty performing daily tasks, intense guilt over the death, or thoughts of suicide. Reach out to a mental health professional if these symptoms persist.

The death of a loved one changes your life forever. After sevenplus years, not a day goes by that I don’t miss my mom. But I can say, it does get better. Life goes on. I have a beautiful daughter named after my mom who helps me remember the thirty years I had with her. Remember the good times.

Moving forward is not about forgetting the person who died but finding a way to honor their memory while continuing to live your own life. You can honor their memory through various means, such as sharing stories about them, creating a memorial or tribute, or carrying on traditions they loved.

Adjusting to life without the loved one takes time. Be patient with yourself as you navigate this new normal. It’s essential to continue self-care and seek support when needed, whether that’s through friends and family, a support group, or professional counseling.

Remember, it’s okay to move on. It’s not about leaving your loved one behind but learning to live with the love and memory of them inside you. It’s okay to feel happiness and joy again, and it’s okay to love again. There’s no timeline for grieving, and everyone’s journey is different. Your journey is yours, and it’s okay to move at your own pace.

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Most Important Next Steps

1. *Initiate Conversations Early:* Don’t wait for the critical moment. Begin discussing end-of-life wishes and preferences with your loved one while they are still in a position to communicate and make decisions.
2. *Legal Preparations:* Ensure that a living will and a power of attorney (POA) for healthcare are prepared and updated, capturing the exact wishes of your loved one.
3. *Consider Hospice Care:* Recognize when it might be time to transition to hospice care, focusing on comfort and quality of life rather than treatment.
4. *Seek Professional Guidance:* Engage with bereavement navigators or other professionals trained to guide and support families through the complexities of grief and post-death responsibilities.
5. *Organize After-Death Responsibilities:* Prepare for the practicalities following a loved one’s passing, such as notifying institutions, arranging funeral services, and handling estate matters.
6. *Prioritize Self-Care:* As a caregiver, don’t neglect your mental and emotional well-being. Consider seeking out grief counseling or joining a support group to navigate your feelings and emotions.
7. *Celebrate Memories:* As time goes on, find ways to honor and remember your loved one, cherishing the moments and experiences you shared.

Navigating the territory of end-of-life care can be one of the most emotionally draining and challenging experiences for a caregiver. Yet, with preparation, understanding, and the right support, this journey can also be one of profound love, reflection, and acceptance.

While the void left behind by a loved one can never truly be filled, caregivers can find solace in honoring their memories, cherishing shared moments, and moving forward with their lives, carrying the imprint of their loved ones in their hearts. In the circle of life, it’s not about the ending but about new beginnings and finding meaning in every phase. Remember, as you walk this path, you are not alone, and there’s a world of support waiting to guide and hold you.

== Postface

image::https://i.nostr.build/UWuxZjxQkeSRjyCU.png[cover page, 300]

== Conclusion: Embracing the Journey

The hardest part of becoming a caregiver is the fact that this is uncharted territory. While this book is designed to be guiderails for you along this journey, everyone’s path will be different. Each of you are different, and your relationship with your loved one is different. Think of this like bumpers in a bowling lane. They don’t guarantee a strike, but they do help the ball keep moving closer and closer to the pins.

As stressful as it is to suddenly realize your loved one needs significant help to stay safe at home, it is even harder to be the elder in this situation. They have likely felt a slow decline for years, and that is emotionally draining. They may have outlived many of their friends and loved ones, and that is taxing to the soul. They certainly want to keep as much of their independence and agency as possible. But they also likely understand that they do need help with certain things, even if they refuse to admit it.

Try to keep their perspective in mind. When tough decisions have to be made, have a gentle and understanding conversation. Let them participate in the decision-making and let them lead it if they are able. This encourages autonomy while also allowing them the opportunity to accept help.

Be sure to celebrate joys and achievements along the way. Honor their wisdom and experience. The goal is to help them maintain their dignity, quality of life, and as much autonomy as possible. Accepting help is hard. They may feel it is an admission of their limitations.

Be kind to yourself as well. While you are asking your parent to accept help, look at ways you can accept help as well. You don’t have to do everything on your own. It is impossible to be a perfect caregiver, child, spouse, sibling, parent, employee, and any of the one hundred other roles you are filling.

Give yourself some grace. Little by little and step by step is the way things get better. Try to find the bright side of things and the humor in challenging situations. Remember, you tend to find what you are looking for. Thank you for taking the time to read this book. I hope it helps you with the many challenges of navigating the healthcare system and helping our loved ones age in place.

== Acknowledgments

I would first like to acknowledge my wife, Kaitlin. You have helped progress this book in countless ways. From encouraging me, to reading early drafts filled with typos and grammatical errors, to taking the girls out of the house to allow me a few hours to work on this book when deadlines are near. Thank you. I love you and would not have accomplished this without you.

To my daughters and their grandparents, thank you for allowing me the time and space to work on this book. I believe this process will eventually lead to more time with each of you, which is the purpose of this endeavor.

Dr. Salazar, thank you for your guidance and attention over the years. Walton Rehab was truly a wonderful place to start my career. I was fortunate to have you as a mentor and influence. Your grace under pressure and dedication to the important over the urgent give me something to continue to work toward. Aaron Hasten, I am so grateful to have grown from employee to friend bordering on family. You showed me what being a leader looks like when I was starting my career as a PT. Your stability and dedication to family is inspiring, and I look forward to further strengthening our families’ ties.

I want to say thank you to my final clinical instructor when I was a student so many years ago, Mildred Nelson. You had more of an impact on me than you know. Thank you for the years of knowledge and guidance after we became coworkers. You helped me recognize when I had put my foot in my mouth and how to navigate healthcare as a profession.

To all my coworkers and former coworkers, thank you for what you do every day for our patients. Working in healthcare can often feel thankless, and the burnout rate is high. Thank you for all you do to help the people in your care.

I need to say thank you to Herlene Somook. Your help with https://www.KeepMomSafeAtHome.com for years is the main reason that project still exists and continues to grow. I look forward to working with you again in the future.

To my coach at self-publishing school, Karen Pina, thank you. Your skill in navigating the self-publishing journey has been helpful for me to get to this point. I look forward to more wisdom as we approach a book launch.

My editor, Carly Catt, thank you for your help to date. Thank you for your wisdom, organization, big-picture view, and skill with developing a book worth reading.

To the East Coast Pod: You know who you are. Thank you for your weekly accountability, your critical eye, your desire for us each to be better. Thank you each individually for your support and your specific areas of expertise. I appreciate you all and am better than I would be because of you.

== Author Bio

Winn Merwin is a Doctor of Physical Therapy. He has spent the last ten years working with the elderly and their accidental caregivers. He is grateful to get to spend so much time learning from as well as helping the geriatric population. His gift is connecting with the elderly, especially the _difficult_ ones. And his desire is to help people age in place with grace, to help them stay out of the medical system for as long as possible. This improves quality of life and maximizes the time we have with our loved ones.

Winn is a proud husband and father of two beautiful daughters. They live in the northeast Atlanta suburbs and enjoy traveling as a family and spending time at home with their dog, Maggie.

== Book Blurb

Welcome to _The Accidental Caregiver’s Guide_, a transformative guide for those unexpectedly thrust into the role of caring for an aging loved one. Authored by an experienced Doctor of Physical Therapy, this book is more than a manual; it’s a beacon of hope and clarity in the complex world of caregiving. With over a decade of professional and personal experience in geriatric care, the author shares invaluable insights, turning daunting challenges into manageable tasks.

This comprehensive guide leads you through every step of the caregiving journey. From recognizing the initial need for assistance to mastering the intricacies of the healthcare system and creating a safe haven for aging in place, this book is your unwavering companion. It’s filled with practical, actionable advice, empowering you to ensure the well-being of your loved one while safeguarding your own peace of mind.

_The Accidental Caregiver’s Guide_ is more than just a caregiving manual; it’s a testament to the transformative power of compassionate care. By applying the strategies within, you stand to save significantly, extending quality time and comfort for your loved one at home.

Your caregiving experience is a hidden gem, an opportunity to gain invaluable insights for your own future. Don’t let uncertainty and stress dictate another day. Open this book and step confidently into your role as a compassionate caregiver and a forward-looking individual ready to embrace life’s lessons.

== Don’t Forget Your Free Gift!

To get the best experience with this book, I’ve found readers who download and use _The Accidental Caregiver’s Guide Workbook_ are able to implement faster and take the next steps needed to help their loved one navigate the medical system and get back home to safely age in place. They see improved quality of life with reduced stress for themselves and their loved one.

image::https://i.nostr.build/npUxzYB1re8zjszs.png[free workbook, 300]

[INFO]
====
You can get a copy by visiting: https://www.KeepMomSafeAtHome.com/workbook
====

== Urgent Plea!

[.lead]
Thank You for Reading My Book!

I really appreciate all of your feedback and I 
love hearing what you have to say. I need your 
input to make the next version of this book 
and my future books better.

Please take two minutes now to leave a helpful 
review on Amazon letting me know what you 
thought of the book:

https://KeepMomSafeAtHome.com/review

Thanks so much!

—Winn

image::https://i.nostr.build/uVy9rjFQD81L3XiQ.png[author, 200]