If I Get Dementia

A friend shared this today.  It sums up what it is like to fear the changes caused by dementia.  Put yourself in their place and remember to choose your battles – they know what is in their brain and you can’t change it, no matter how far away it is from your memory.  If you are the anonymous author of this note, please send me a note and I’ll recognize you.  Thanks

“I worked in secure dementia units for several years; I absolutely loved it. I had a patient that couldn’t remember how to feed herself, but if you sat her at the piano, she would play the most beautiful music. We would cook together in the kitchen at times and do chores like folding laundry. You step into their reality, and it can be a beautiful experience (yes at times it is not).

That being said, my daughter has been instructed that if I get dementia, I want to be dropped in the woods to wander my favorite place.”

Posting this in honor of friends and family living with this challenging illness. 

  • 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.
  • If I get dementia, don’t argue with me about what is true for me versus what is true for you.
  • If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.  
  • 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. 
  • If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.
  • If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am. 
  • 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.
  • If I get dementia, ask me to tell you a story from my past.  
  • If I get dementia, and I become agitated, take the time to figure out what is bothering me. 
  • If I get dementia, treat me the way that you would want to be treated. 
  • If I get dementia, make sure that there are plenty of snacks for me in the house. Even know if I don’t eat, I get angry, and if I have dementia, I may have trouble explaining what I need.
  • If I get dementia, don’t talk about me as if I’m not in the room.
  • 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.
  • If I get dementia, and I live in a dementia care community, please visit me often.
  • 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.  
  • If I get dementia, make sure I always have my favorite music playing within earshot. 
  • If I get dementia, and I like to pick up items and carry them around, help me return those items to their original place. 
  • If I get dementia, don’t exclude me from parties and family gatherings.
  • If I get dementia, know that I still like receiving hugs or handshakes. 
  • If I get dementia, remember that I am still the person you know and love.”

ᴄᴏᴘʏ ᴀɴᴅ ᴘᴀsᴛᴇ in Honor of someone you know or knew who has dementia. In Honor of all those I know and love and lost who are fighting Dementia/Alzheimer’s.

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