There Is No “Fighting” Dementia
I wish I had better news for you
Watching my mother slowly die from dementia has turned me into an avid reader of the local obituaries.
This is weird, I know. It’s not a typical habit for somebody who hasn’t hit fifty yet.
But every day I scan my local news site and read the obituaries and look at all the ages of the people who have died.
And this is what I think when I see anyone who has died in their early 80s:
“You lucky bastard.”
When you read a lot of obituaries, you start to become familiar with their most popular phrases.
“After a courageous battle with…” is one of your biggies. There’s several of those every day, followed by any number of horrible diseases and conditions. “Cancer,” of course, of many and various types. “Drug dependency” or “alcohol addiction” also follows that phrase a lot. As do “mental health issues” and “lifelong depression.”
And of course you see: “After a long and courageous battle with Alzheimer’s Disease” or “dementia.”
I roll my eyes when I see that phrase now, I’ll admit it. I am not saying that those who suffer from dementia are not as unimaginably brave as all the other poor souls battling their diseases. What I am saying is that it is laughably simple to think that you can fight dementia in any meaningful way.
I’m sorry. I know nobody wants to hear that.
But in addition to reading obituaries, I read a lot of health information and caregiving tips. Mercifully for both my mother and me, she now lives in a Memory Care facility staffed by (largely) kind and skilled caregivers, so why I am still reading caregiving tips articles is beyond me.
Maybe because I’m still trying to solve the puzzle of how to help my mom understand she’s never going home, but at least she’s in a nice warm room with mostly caring people and one of her kids sees her every day and the food is pretty good and it could be worse, right?
I will never solve that puzzle. If I watch one more video that tells me people with dementia who want to go home don’t actually mean they want to go home, they just want to know they are safe and cared for and you have to figure out what it is they really do want, I will seriously lose it.
When my mother says, “Where am I sleeping tonight?” And I say, “Here in your very nice room, in your bed, where you’ve slept every night for a year,” she invariably says, “I can’t sleep here. I need to go HOME.”
Once, a few months ago, I tried to follow the caregiving tips and get her to talk about what part of home she was missing. So when she was sitting in the lobby of her facility, demanding to go home, I tried to distract her by asking, “Well, Mom, what is your favorite part of being at home?”
She looked at me like I was a complete moron and said, “BEING AT HOME.”
She won that one.
Everyone reacts to watching a loved one suffer with cognitive decline differently. My sisters are reading all the articles on how to stave off dementia and asking their kids to bring them things they know they’d miss if they ever went to the nursing home (one sister has already requested avocadoes).
Me? I’m a former drama club kid and my reaction mirrors that history. I’m trying to stay off blood pressure meds so I don’t live too long and have written down instructions to my kids to stick me in the nursing home and not to visit or ask questions about my care, so hopefully any infections I get will just be missed and allowed to spiral out of control until I can die.
These thoughts about aging and long-term care occur to everyone. There is an entire industry based on peoples’ fears of suffering from Alzheimer’s disease or having to enter a skilled nursing facility. Take this supplement! Do your daily crossword puzzle! Engage in physical exercise!
Whatever.
I’m here to tell you that one of my aunts, who went back to school for her GED and learned German in her late middle age, suffered from dementia. A former teacher of mine, who was still giving piano lessons in her eighties, is suffering from dementia. My own mother could have been considered, up until her stroke in her early 80s, pathologically active. She gardened and worked in her orchard and took care of her house and made meals for her bachelor son every single day of the week.
She still got dementia.
I’m not telling you you can’t do any of those things. I’m not even saying they won’t help. They might. Do what you feel best.
I just wish I too could believe that any kind of fish-oil supplement would keep me out of the Memory Care facility. I wish more than anything that my mother’s physical activity and daily mix of cholesterol-lowering and blood-pressure-mitigating and heart-rhythm-moderating drugs could have spared her this fate. I wish it so much my heart hurts and I end every day tired from hoping and praying with all my might that she can be free soon.
One other thing I’ve learned from my new obituary-reading habit is that there are a lot of sad deaths out there. I have been shocked to find how many people are dying in their 20s, 30s, and 40s, and how honest their families and loved ones are about the addiction and health and other struggles (or even just bad luck, in the case of many accidents) they were having.
And I know people want to honor their loved ones by noting the bravery and stoicism and love for others that the deceased displayed while alive and fighting their disease or challenge.
But “after a brave battle with dementia” won’t appear in my mom’s obituary if I can help it.
I honestly don’t know what I would choose to write instead. But it would probably be something more along the lines of “If my mother couldn’t win against dementia, nobody can. Stop reading this obituary right now and go wring every moment out of life before it comes for you. And please consider telling your loved ones you love them and you forgive them if they have to take you to the nursing home someday. They know you don’t want to go, but they can’t win against dementia either. And it will eat them up inside knowing how they have failed you.”
Maybe I’ve started reading the obituaries in the hopes that I’ll come across a paragraph like that. I haven’t found it yet.