May 9, 2019

16 Things I Would Want, If I Get Dementia

Just in case I do get dementia, I've written a list of rules I’d like to live by.

When you work in dementia care, people tend to ask you a lot of questions. Probably one of the most common questions that I hear is,

“Are you afraid to get dementia when you’re older?”

By Rachael Wonderlin
Alzheimer's Reading Room

Honestly, there are many things that scare me much more than dementia does. Don’t get me wrong: dementia is a terrible group of diseases. I've been fortunate, however, to see many of the beautiful moments that people with dementia can experience.

Just in case I do get dementia, I've written a list of rules I’d like to live by.

If I get dementia, I’d like my family to hang this wish list up on the wall where I live.

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If I Get 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 we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.

2. If I get dementia, I don’t 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 I’ve 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 don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.

8. If I get dementia, don’t talk about me as if I’m not in the room.

Learn More - Coping with Dementia

9. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve 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, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s 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, don't exclude me from parties and family gatherings.

15. If I get dementia, know that I still like receiving hugs or handshakes.

16. If I get dementia, remember that I am still the person you know and love.

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Rachael Wonderlin is the Director of  Memory Care at Blue Harbor Senior Living, and specializes in long term dementia care. She graduated from the University of North Carolina at Greensboro with a Master’s degree in Gerontology. She writes and answers questions from readers at Dementia By Day.


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About the Alzheimer's Reading Room

"Bob DeMarco knows what he's talking about. Not only was he the primary caregiver for his mother with Alzheimer's, but he put in the time and dedication it took to learn more about dementia. It's clear that this lit a fire in him, and it's a fire that you can't find elsewhere on the Web. 
Alzheimer's Reading Room is an online library on dementia care. If you need to know about it, you'll find it here." 
- Rachael Wonderlin, author of "When Someone You Know is Living in a Dementia Care Community" and founder of the blog, Dementia By Day.

Originally published by Alzheimer's Reading Room