16 Things I Would Want If I Got Dementia
A heartfelt wish list from a dementia care worker
(This article appeared previously on AlzheimersReadingRoom.com.)
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?”
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 16 rules I’d like to live by.
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.
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.