My Mom Went Straight From Denial Into Dementia

I love her, but hope not to follow the same trajectory

Photo by Darwis Alwan: https://www.pexels.com/photo/sunset-1454769/

Somewhere in my forties I figured out, “Oh — your strengths are also your weaknesses. I get it now!”

I should have figured this out sooner, as I had a front-row seat to one of history’s all-time strengths v. weaknesses one-man shows in the person of my Mom.

For a long time my mother’s strengths served her very well. Now I have to watch her descend into old age and dementia and fall prey to the flip sides, the weaknesses, of all those strengths.

It has not been an easy thing to watch.

For most of my young life, my mom was my best friend.

She was my mom, but she was also my boss and my colleague in my family’s farm-market business. She was a woman of strongly held opinions and she formed mine for many, many years. She was an insanely hard worker who both put me through my paces but also saved me in a million small ways that I didn’t even notice at the time. I did a lot more chores than my peers, but not as many as my Mom; she made gravy for every meat-and-potatoes meal the eight of us ate, but it wasn’t until I left home that I realized that I had no idea how to make gravy; it was one of the thousands of tasks she never asked me to do.

She also had a wicked sense of humor, breathtaking practicality and ballsy-ness (especially for a farm wife who came of age in the 1950s), and a surprising protectiveness that could startle you all the more for how instantly and ferociously she could apply it on your behalf.

I loved and love my mom a lot.

This has not changed the fact that I have been very, very frustrated with some aspects of her approach to aging.

My parents were extremely independent and able farmers who (mostly) enjoyed pretty good health, and were well-served (particularly in my dad’s case) by heart procedures and medications that became widely available in the second half of the twentieth century. They worked hard and saved their money for themselves and for their kids, but also, they joked, “to pay for the nursing home.”

My Dad “lucked out,” working happily in his garden until the day he died, in his 80s, of a massive and basically instant heart attack.

A large part of my Mom died with him that night. None of her kids understood that, for a long time, because she presented us with her independent and practical sides and just got through the funeral, got through writing the thank-you cards, got through all the holidays the first year, all without making much of a fuss.

I didn’t realize for a long, long time, that increasingly what we would see from our Mom would be the repercussions of her weaknesses, which in all her 75+ years up until then had functioned more as strengths. Here were how her strengths worked for most of her life:

She was mad as hell and she wasn’t going to take it anymore. My Dad and Mom were very opinionated and also very sure of themselves. Over the years they became involved in many political fights, from the small and local like keeping our small grade school open, to the larger, like advocating for better dairy prices in state politics.
She was independent. She and Dad really functioned as partners, but they supported each other in their hustles. Mom worked hard alongside Dad on the farm, but she also ran with my sister’s idea to branch out into selling produce at a local farmer’s market. The woman whose parents didn’t teach her to drive (many young women in the 1950s just “didn’t drive”) learned how to drive from her father-in-law, and then used her skills to start a business, drive into the city, set her own prices, and make a good supplemental income.
She had a lot of energy. She worked hard all day until 6 p.m., and then, because she was a night person by nature, she found an extra gear and worked even harder much of the night.
She believed there is a solution to every problem. You just had to stand up for yourself and find it and demand it.

Now let’s examine how those very same strengths turned into weaknesses as Mom aged, and particularly after my father’s death:

She was angry. Dad was supposed to take care of her until she died; he was not supposed to die first.
She was strong-willed. She was going to live on her farm until the day she died, and she was going to remain independent. She took care of us kids. We did not take care of her. She wasn’t going to take one single suggestion of ours to make her house easier to live in, or to make it easier for us to help her.
She was constitutionally unable to sit still. She had work to do (even if she couldn’t see it), and it didn’t matter if you wanted to just visit without working. If you didn’t want to work with her, you could just go on home.
She did not accept that there were really not cures for some of her problems. She believed she failed herself, and her kids failed her, by not finding and demanding “the solutions.”

Of course the flip sides, the weaknesses, were also present through her whole life. There were times when she was more stubborn than independent, more exacting and demanding than loving.

But the weaknesses really took over when she faced the debilitating one-two punch of macular degeneration and dementia.

In 2019, my mom suffered a stroke. She recovered well (we thought) and didn’t even have to re-learn any physical skills or attend rehab.

However, that was also the year her macular degeneration started to turn from dry (meaning asymptomatic) to “wet.” If you are at all familiar with macular degeneration, you will know it is just that: a degenerative condition that gets worse over time, and which, due to bleeding within the eye, causes scarring on the macula, the part of the retina needed for detail and central sight. Even if, over the course of many years, it doesn’t make you totally “blind” blind, it does demolish your ability to read or see details like the oven temperature or the dials on the washing machine.

When it gets bad enough, it makes it impossible to live fully independently.

For a long time we helped my Mom make up her pill box and do her housework, and we were so busy noticing and trying to compensate for that, that we really kind of failed to notice that she was starting to experience cognitive difficulties as well.

Even the month she moved to assisted living, her children were still debating among themselves, how much of the difficulty we were having getting her to accept the fact that she needed more help than her children could provide was stubborn independence, and how much was dementia?

Although she has never been formally diagnosed by a gerontology specialist, the consensus among my mother’s doctors seems to be that she is probably suffering from vascular dementia. (There’s several types of dementia, and Alzheimer’s disease, the best known, is only one of them). In vascular dementia, short interruptions in or differences in blood flow to the body and the brain can create cognitive difficulties and many of the symptoms of debilitating dementia.

So currently she and we are in the situation where she believes (as she always has) that her macular degeneration can be cured (it can’t) if her kids would just take her to the right doctor. Every single time I visit her in Memory Care, she angrily alludes to the fact that somebody has to do something about her eyes, right now.

She also demands to be taken home. Even though she doesn’t know what time of day it is and she doesn’t even understand she is in the nursing home (she thinks she’s on vacation — have I mentioned that dementia totally sucks?), and she can’t see, she still believes that if we just dropped her off at home, she would be fully able to take care of herself.

It’s heartbreaking.

And at the end of the day, it makes me wonder. If she had not believed that her macular degeneration could be cured when she was still in the very early stages of dementia, would she be less demanding now about curing it? (Which we so wish we could do for her, but we just can’t.)

If she had ever, just for a moment, accepted that she might not be able to take care of herself in her own home, would she have been able to find some closure by helping look for an assisted living situation she might like, or by helping put her own house in order?

Would any of that have made any difference?

I don’t know.

But I know this: there is a strong hereditary component to macular degeneration. I am already making my peace with the fact that, when it comes for me, I will have to massively simplify my house and my life so that I can learn to feel my way around the bathroom and the kitchen. I will have to work with others to designate certain places for certain things, and then just try to remember where they are, so I can be a little independent just that much longer.

I have seen how horrible it is not to understand why your children are taking you out of your perfectly good house to stick you in the awful nursing home (or some terrible vacation location that was not your choice). I so hope that I am aware enough of my own coming cognitive losses that I get my house in order, both literally and figuratively, and try to accept the fact that I may not be able to die in my own home.

I hope these things for my kids.

In many ways I do not offer my kids the strengths my mother offered me. I’m not always sure I’m right, so I can’t gift them that amazing self-confidence. I don’t have endless energy, so I can’t do all the work my mother did.

Instead I’m hoping to cultivate just one strength that stays a strength: I hope to accept those things I cannot change. My mother may have chosen the more poetic path of raging against the dying of the light, but if my ending is less poetic, I will hope that it is also less rage-filled for myself and for those I love.