A heartfelt wish list from a dementia care worker

By Rachael Wonderlin
Part of the Transforming Life as We Age Special Report

(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??