Rachael Wonderlin - When Someone You Know Is Living in a Dementia Care Community: Words to Say and Things to Do

When Someone You Know Is Living in a Dementia Care Community

A 36-Hour Day Book

WORDS TO SAY and THINGS TO DO

Rachael Wonderlin

This book is not meant to substitute for medical, legal, or other professional care of people with dementia, and treatment should not be based solely on its contents. Instead, treatment must be developed in a dialogue between the individual and his or her physician. This book has been written to help with that dialogue.

2016 Johns Hopkins University Press
All rights reserved. Published 2016
Printed in the United States of America on acid-free paper
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Library of Congress Cataloging-in-Publication Data

Names: Wonderlin, Rachael, 1989, author.

Title: When someone you know is living in a dementia care community / Rachael Wonderlin.

Description: Baltimore : Johns Hopkins University Press, 2016. | Includes bibliographical references and index.

Identifiers: LCCN 2015050731| ISBN 9781421420646 (hardcover : alk. paper) | ISBN 1421420643 (hardcover : alk. paper) | ISBN 9781421420653 (pbk. : alk. paper) | ISBN 1421420651 (pbk. : alk. paper) | ISBN 9781421420660 (electronic) | ISBN 142142066X (electronic)

Subjects: LCSH: DementiaPatientsCare. | Older peopleCare. | Long-term care facilities. | Popular works.

Classification: LCC RC521.W63 2016 | DDC 616.8/3dc23

LC record available at http://lccn.loc.gov/2015050731

A catalog record for this book is available from the British Library.

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Johns Hopkins University Press uses environmentally friendly book materials, including recycled text paper that is composed of at least 30 percent post-consumer waste, whenever possible.

This book is for my grandparents, Paul, Patti, Eugene, and Charlotte, who showed me that aging can be graceful, happy, and full of love and wisdom. This is for everyone who encouraged me along the wayespecially my family, Rob, my professors from the University of Mary Washington Psychology Department and UNC Greensboro, and a lot of great friends.

And for Dot, who showed me that dementia can never rob you of what makes you beautiful.

Dementia can be a lonely diagnosis, especially for the caregiver. Spouses, partners, adult children, siblings, close friendswhoever the caregivers are, their challenges are many. And their questions are many, too.

Is long-term care right for my family member or friend with dementia?

What happens after I drop my parent, partner, sibling, child, or friend off at a long-term-care community?

What should I do to prepare for move-in day?

How can I make my visits go more smoothly?

What happens if my loved one has a romantic relationship with another resident?

Even if you are the person who has made the difficult decision to bring a family member or friend to a long-term-care community, you may feel like you dont have all the answers you need or anywhere to turn to get them. Most of the information found online and in other books focuses on in-home care. Although this information is useful, people looking into dementia care communities need information specifically about community dementia care.

Maybe you have yet to choose a long-term-care community for your loved one, but you can see that the choice is on the horizon. Maybe in-home care has become too challenging or too exhausting. Perhaps you have been the sole caregiver for years, but you know that now you must focus on yourself.

Maybe you arent thinking about these decisions for someone you know but instead work in a long-term-care community and want to gain even more insight into the people you help care for. Maybe you are a student who is curious to learn more about dementia care. In any case, I hope this book provides you with many of the answers you seek. My goal is to improve your relationship with the cognitively impaired individual or individuals in your life while helping you choose the best long-term dementia care community possible.

When discussing long-term care in this book, I will use the term communities to describe places where people who have dementia live. Other terms, such as homes or facilities, are often used, but I find the word communities to be friendlier. Despite the many types of long-term carein-home care, assisted-living communities, independent-living communities, continuing-care retirement communities, and skilled-nursing facilitiesthis book will focus on dementia care within a community. I will not use the phrase memory-care community because not all residents in a dementia care community have a memory problem. In this book all these communities will be called dementia care communities.

I tell many stories about families and residents, but their names and the details of their lives have been changed to protect their identities.

Before going further, I want to pause to share my list of things I would want if I had dementia. This was originally posted on my friend Bob DeMarcos popular blog, Alzheimers Reading Room. The list captures the essence of the book you are about to read. It has helped many caregivers preserve the wishes of the person in the person who has dementia.

1. If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think were visiting my parents for dinner, let me believe those things. Ill be much happier for it.

2. If I get dementia, I dont want to be treated like a child. Talk to me like the adult that I am.

3. If I get dementia, I still want to enjoy the things that Ive always enjoyed. Help me find a way to exercise, read, and visit with friends.

4. If I get dementia, ask me to tell you a story from my past.

5. If I get dementia, and I become agitated, take the time to figure out what is bothering me.

6. If I get dementia, treat me the way that you would want to be treated.

7. If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I dont eat I get angry, and if I have dementia, I may have trouble explaining what I need.

8. If I get dementia, dont talk about me as if Im not in the room.

9. If I get dementia, dont feel guilty if you cannot care for me 24 hours a day, 7 days a week. Its not your fault, and youve done your best. Find someone who can help you, or choose a great new place for me to live.

10. If I get dementia, and I live in a dementia care community, please visit me often.

11. If I get dementia, dont act frustrated if I mix up names, events, or places. Take a deep breath. Its not my fault.

12. If I get dementia, make sure I always have my favorite music playing within earshot.

13. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places.

14. If I get dementia, dont exclude me from parties and family gatherings.