I don’t have dementia. But I have the privilege of spending a lot of time with people who do. And if they had the ability to articulate their thoughts and feelings, my observation is they would tell us this:
“Expect me to forget. In other words, please don’t react with disappointment or frustration or worry when I forget that I just told you the same story, or when I can’t remember your name, or when I say that it was Uncle Jerry who ate the ice cream when it was really Uncle Tom. Please remember that I am doing my best to live in a world based in reality and fact and accuracy while my brain’s ability to live in that world is failing.”
“About those reactions of disappointment, or frustration, or worry. My ability to understand how your emotional reactions and facial expressions relate to me will diminish quickly as I lose rational thought. I will be left with your emotion, and limited ability to understand it. So please bring largely positive emotion and positive experiences into my life. I still may want to watch the evening news, just as I’ve done for the last 67 years. But please know that I may need help understanding the bad news, and help understanding that all is well. And this: I probably don’t need to hear about the latest family struggle or family drama. I will care and will remain concerned and will want to be able to help, but I won’t be able to sort out the details so I’ll be left with the concern and the desire to help without much ability to help, so I will probably stay in an anxious state of restlessness. This means that later on, when you want me to participate in something like getting dressed or a shower, I may get really upset with you….not because I’m upset with you in this moment, but because I’ve been anxious for an extended period of time and I don’t have the skills to get myself to a point of not being anxious.”
You see, our folks living with dementia will progressively lose touch with the world of fact and reality and accuracy. They will become increasingly sensitive to the emotions of others and/or the world around them and will lose the ability to sort out the facts connected with their emotions.
As we come to expect lapses in memory and changes in rational thought, we are better able to create a dementia-aware experience for our folks with dementia; people who are trying so hard to live right…with limited skills to get it right.
Thank you to Judy Cornish and the DAWN Method https://thedawnmethod.com/ for letting us learn how to get dementia right and be able to speak on behalf of our friends living with dementia. It is an honor.
Grateful,
Jill