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20 Things I Would Want If I Got Dementia

I wrote this a few years ago, but just added four more “things” to my list.

If I get dementia, I’d like my family to hang this wish list up on the wall where I live. I want them to remember these things. The original list was also published in my book, When Someone You Know is Living in a Dementia Care Community.

  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, don’t argue with me about what is true for me versus what is true for you.
  3. If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.
  4. If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.
  5. If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.
  6. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
  7. 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.
  8. If I get dementia, ask me to tell you a story from my past.
  9. If I get dementia, and I become agitated, take the time to figure out what is bothering me.
  10. If I get dementia, treat me the way that you would want to be treated.
  11. 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.
  12. If I get dementia, don’t talk about me as if I’m not in the room.
  13. 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.
  14. If I get dementia, and I live in a dementia care community, please visit me often.
  15. 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.
  16. If I get dementia, make sure I always have my favorite music playing within earshot.
  17. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places.
  18. If I get dementia, don’t exclude me from parties and family gatherings.
  19. If I get dementia, know that I still like receiving hugs or handshakes.
  20. If I get dementia, remember that I am still the person you know and love.

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