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.
If I get dementia, I’d like my family to hang this wish list up on the wall where I live:
Rules for a Good Life
- 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, 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 now, 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 places.
- 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.
Some things I would add to this list:
- If I want to eat dessert first let me, I like dessert.
- Let me wander: I did this before I got dementia too, I enjoy the exercise, it helps me sort through my reality.
- Never forget the love that I have for my family and friends even if I can’t express it.
- Though I may not remember you or communicate as well, I still feed off your emotions and can see love or frustration in your eyes, a kind touch or smile goes a long way, I can still understand those emotions well.
- It is okay just to sit and be with me, no words have to be spoken.
- Let me sleep as late as I want to in the morning and stay up as late as I want to at night, I was erratic about this before I had dementia, don’t expect it to change.
- Offer me seconds at every meal, I like to eat.
- Enter my reality, don’t try to force me into yours, embrace it, there will be days this can be a fun trip down memory lane.
What would you want others to know about you??