Mom Just Wants to Go Home: Wishes, Reality, and Resources

By Lynda James-Gilboe

Unfortunately, Mom had an acquaintance who reinforced this belief, and even helped Mom leave one facility without being properly discharged. That escapade resulted in her being back in the hospital in 18 hours. This very personal book describes the difficult and heartbreaking journey, complicated by significant financial challenges, legal issues, the complexities of the healthcare systems, and family drama. The experience illustrates how important it is to have open discussions about end-of-life desires with your family members, to review finances, and to make and document plans.

Not talking about these things doesn't cause them to go away, it just makes it harder to deal with them. Ultimately, much to her profound disappointment, the reality of mom's physical condition, together with her financial limitations, made her desire to go home unattainable.

• Language: English
• Publisher: BookBaby
• Release date: Apr 24, 2023
• ISBN: 9781667898698

Book preview

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Mom Just Wants to Go Home

© 2023 Lynda James-Gilboe

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.

ISBN 978-1-66789-868-1

eBook ISBN 978-1-66789-869-8

Dedicated to…

My family

John, for always having my back no matter what

Kevin, Emily, Morgan, and Laura, Alexandra, and Sloane, I love you

Mom and Dad, I did my best

Table of Contents

Forward

Prologue

Chapter 1: First Signs Of Trouble

Chapter 2: The Pot Roast Saga

Chapter 3: You’re Taking Away My Rights!

Chapter 4: Discharge Plan – The Big Elephant In The Room

Chapter 5: Reality Of Life Back At Home

Chapter 6: It Falls Apart Again

Chapter 7: Rehab Redux

Chapter 8: Long-Term Care Begins

Chapter 9 : Depression? Dementia? Cognitive Capabilities?

Chapter 10: It’s A Privilege

Chapter 11: Navigating The Health Care System: Impact Of The Rules

Epilogue

Forward

You may have heard about the Medicare donut hole, the limbo you’re in during some years when your own spending and your plan’s spending reaches a predetermined amount. You don’t leave the donut hole until your spending reaches the catastrophic coverage level. While this has created big financial hardships for many families over the years, there is another gap in the healthcare system that feels more like the Grand Canyon than a donut hole.

Elderly people who need some type of assistance to either stay in their own home or to move to assisted living facilities can face real financial challenges since these services are not typically covered by Medicare/Medicaid. Depending on where you live, there are some waiver programs that can help a bit, but you may encounter long waiting lists. When such individuals require nursing home care, Medicaid may come to the rescue and pay for nursing home care. But when you face a situation in which your loved one really needs more help but doesn’t need a nursing home or strongly prefers to remain at home, you enter the haves/have not zone.

There are some wonderful, assisted living options out there, but costs are high for basic rent and additional health care options offered on site may be priced ala carte. In looking into options for my own Mom, I encountered pricing from $12-75K plus just for rent annually, with the low range being a group home -type setting. Similarly, at-home care is very expensive, and can run anywhere between $15-$30 per hour. I firmly believe these home care workers deserve this pay and more; it’s just not affordable to many Americans to pay this kind of money. To have someone in the home just four hours a day is more than $20,000 per year minimum, and for many, four hours, or even one person, is not enough. I’d like to pause here and express my thanks and appreciation to A Place for Mom, a truly wonderful organization who works hard to help people find a good solution for their loved ones. When I reached out to them, the person who assisted me was thoughtful and caring, and I’m grateful. And I was pleased to learn that they are able to help with options for either at-home care or finding a new place for loved ones to live. But even this terrific service can only go so far for seniors with limited financial resources.

When she joined Medicare, my mom took care to pick a good Medigap plan, but ultimately that didn’t cover many of the services she came to need. And her savings would not cover even a partial year of assisted living or at-home care service. My siblings and I are retired or approaching retirement ourselves and prices for these services would quickly dilute or even wipe out our own retirement savings, particularly scary given the uncertainty one hears about the future of the Social Security system. Draining our savings and perpetrating this problem for our own children does not seem like a good answer.

So, what does this mean? People like my mom, and I bet there are a lot of them in the United States, do the best they can to live their lives, relying on family and friends to help keep it all together. But as infirmities progress, this gets harder and harder to maintain. The notion of relying on elderly adult children to assist their even more elderly parents with daily living tasks like showering, getting up and down, and the hundreds of things we all need to do every day is physically and emotionally daunting, and can become overwhelming, or simply impossible to maintain. Relationships can become permanently strained. In other cases, there really isn’t anyone available who can offer this kind of help, so the elderly person is fending for themselves.

The bottom line is this. You’re fine if you don’t have any need for home care or assisted living. You’re also likely fine, or at least more financially stable, if you do need nursing home care as you can apply for Medicaid if you don’t have financial resources or long-term care insurance to pay for it. But if you need home care or assisted living, and don’t have a way to fund those things privately, you will quickly find yourself at the bottom of the Grand Canyon, with no way up.

The toll of navigating through this enormous chasm of minimal and non-assistance is tremendous. The stress of worrying about loved ones who need more help but can’t get it is massive. The risk of injury or emotional impact related to living in this gap is always there and growing and impacts both the elderly family member and the care givers.

This story is about my own family’s experience of living in this gap for years. I have not tried to provide formal research statistics or data about trends, this is a personal story. But I do know this – we are not unique in this journey. Too many seniors face poverty, live in fear, and aren’t getting the help they need. And their families face stress and worry as they try to help.

In my own parents’ case, I will be the first to admit that they have some culpability for the situation in which they found themselves in their later years. I’ll talk about that in the Prologue. At the same time, even if they had made better choices at several junctures, it is unlikely they could have covered all of the expenses for the care that they ultimately needed. I can vouch for the fact that the possibility of outliving resources is a real and scary phenomenon, adding complexity and fear to the final days of some people. And navigating through the services that do exist can be mind-boggling. Even Medicare with all that it offers requires some real study and analysis to get the best plan. Sorting through the plans can be mind-numbing and really hard to understand for even the most experienced and plugged-in seniors.

Before I begin, I’d like to share an internal struggle I faced as I wrote this. Some of this content is raw and painful. I know my parents would be unhappy with me for telling this story – they had a very firm rule about dirty laundry always staying within the family. I’m sorry to break