A friend of mine with younger onset dementia has been sending me some emails telling me about her life. Notice that I don’t say her life with dementia. Sure, she does have dementia, and having dementia is a big deal.
However, you can’t really isolate all of her experiences and attribute them to dementia. She gets annoyed with her husband. She got annoyed with him before dementia, and she gets annoyed with him after dementia. She has joys, and she has struggles. She is looking forward to being a grandma. She celebrates her kids’ career successes. She’s a wife. She’s a mom. She’s a friend. And she has dementia.
She’s in this “in between” stage. I’m not sure I really like the term “in between” because it begs the question…”in between” what? And I’m not sure I really want to answer that or am even capable of doing so.
She knows she’s changing, but she’s still independent. Her emails are easy-to-read. In fact, her grammar is better than 95% of my college students. In writing, she’s clever and has a sense of humor. I just really like her. She’s not my friend with dementia. She’s just my friend–even though I probably wouldn’t have ever met her if she didn’t have dementia.
I know her dementia is going to get bigger, and she knows it as well. She’s a positive person and she has no timeline, but she knows enough about dementia to understand she’s not going to get better.
She hasn’t said it in so many words….but she knows that no one knows what to do with her right now.
Her recent experiences have been eye-opening to me, and I’ve started talking to a few other people I know who are in the earlier stages of dementia. Here are some of the things they have shared:
“Whenever I say something people disagree with, they don’t take me seriously and just assume I’m saying it because I have dementia.”
“People think even my political views are because of my dementia. I told my family I think Trump should be impeached, and they made comments about how only someone with dementia would think that. No, that’s really what I think and I would’ve thought the same ten years ago.”
“The way people treated me changed five minutes after I was diagnosed. People don’t tell me jokes anymore because they think I won’t understand them.”
“I’m sick of people being patronizing. They think I don’t notice because I have dementia.”
“We re-did our kitchen. My husband used to listen to my input and we’d make decisions on house projects together. Now he just thinks I’m not capable to making decisions. He made them all himself. He doesn’t know what a kitchen needs. He doesn’t even cook.”
“Whenever I’m mad, people think it’s related to dementia, even if it’s something I would have been mad about 15 years ago. They don’t even bother to argue with me.”
A care partner once told me that he was a great carer to his wife when she was at the end of life and living in a nursing home. He showed up everyday. He talked to her. He helped her eat. He held her hand.
However, he had regrets about the time after her diagnosis. He told me he wonders if he stole her life long before dementia did.
Looking back, he realizes he didn’t let her talk in social groups for fear she’d say something awkward. He’d interrupt and talk for her. He discouraged her from going to the grocery store because he thought she would forget stuff. He decided it was easier to do the shopping himself. He tagged along when she went out with friends even though it annoyed her. And he discounted every opinion she had about their lives because he assumed her perspectives were invalid due to dementia.
Years later, he wishes he would’ve just let her keep living life.
One of my favorite quotes is “In three words I can sum up everything I’ve learned about life, it goes on.” — Robert Frost
I even bought a cheesy sign with those words on Etsy for our bedroom.
And so life does go on…even with dementia.
Dementia changes life, I know. We make adjustments. As time goes on, those adjustments get bigger and bigger. But still–it’s life.
When someone lives in a nursing home and is limited in their ability to communicate and care for themselves, we sit with them and love them. But dementia is a long journey, and that’s only the tail end of the journey.
Society tends to forget that most people with dementia are living at home, with their families (or even alone), and spend their days making their morning coffee, watching TV, paying bills, and mowing the yard….like the rest of us.
And I’ve come to conclusion that we struggle with how to love those people.
Sometimes our tendency is to ignore that they have dementia, and that doesn’t work. Yet, focusing completely on dementia and protecting them from the world doesn’t work either.
Because life goes on…
5 thoughts on ““In Between” in Dementialand”
Great post Elaine!
Oh goodness, but this post resonates with me. I recently told my husband that I felt I shouldn’t speak for him when we saw any of his doctors. Yet when I tried it, he wouldn’t hear/understand the dr’s or nurse’s question and would look at me for help. I’d wind up repeating the question for him so he could answer. I told him I worried that I did too much for him and now after reading your post, I wonder if I’m ‘stealing his life from him’ by protecting him. Yet, he has such trouble functioning at times. Sigh… no easy answer.
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Thanks for your post. You always hit the nail on the head.
Bringing this up! Autocorrect😳
Elaine, welcome back. Like others I can say we missed you while you had a break.
This is a great post. I am right there at the moment, thankfully early on, and have been noticing how my “caring” can remove independence unintentionally. There is no rule book or guidance about this because “when you have met one person …. you have met one person”. We don’t pay attention to things like this blog until we have arrived in the world. Before that the media portrayal of people with dementia is all we have to learn from, and that nearly always portrays people at the dependant stage. My wife has some things she has chosen not to do. Others she doesn’t do because I have always done them. There is a third set of things where by helping too much, and probably by being too (privately )impatient about things that now take longer I am encouraging her to stop, when I should be encouraging her to continue living as before. Thanks for being this up.
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