Dying of Dementia & Other Horrible Realities


My Mother-in-law and I always had a special relationship.  We got each other, respected each other and had a policy to never take offense, or at least, get over that nonsense quickly. As a single mother, she decided to work in the school system as an aide, giving up more lucrative career opportunities to raise her son.

So it made sense that my husband and I would take her in when she got older. We’d buy a Duplex. She would live downstairs and us up. She would come to dinner each night and we’d pop down to change light bulbs and fix her technology.  

We bought the duplex when she turned 76. She moved in the summer after her 78th birthday. In those two years between expectation and reality, she had been diagnosed with Heart Failure, COPD and then, the big one, Dementia.  

Dementia, in all its forms, is a metaphorical and literal shit storm. No one wants to die this way. Robin Williams suffered from depression, but as it turned out, he killed himself because of Lewy Body Dementia & Parkinson’s. This won’t be a popular statement, but now having seen Dementia in action — the painful triple deterioration of one’s reality, personality and functionality — I think he did the right thing.

I keep hoping for a quick death for my Mother-in-law, but it doesn’t come. She is plagued by paranoid delusions that wax and wane and turn her against everyone, at some point, except her son. She has been left with very little beyond a shuffle between a chair to a bed and back again.  Her life loves are gone. She was a voracious reader, 3 to 4 books a week, but can no longer read.  She cannot even manage to use a phone, so friends have seemed to vanish. Even food has lost all appeal.

I look forward to the rare moments when her hallmark wit and sarcasm shine out through the clouds of her decaying mind, but I can’t sugarcoat this — she is often a depressed, anxious and angry woman. Even lucidity is a curse. She asked me yesterday, “What do you suppose I did, in my life, to deserve this?” To which I responded, “Nothing. That’s not how life works. You don’t deserve this.”

While life may not “work” on this karmic system or even the BS illusion of “everything happening for a reason,” it does often look like suffering and uncertainty. We cover it with our busy-ness, our material things and our pleasurable distractions.  It’s emotionally exhausting to experience daily life with all of this veneer stripped away.

I just wrote an article, submitted it to an Alzheimer’s magazine, about what I’ve learned on my “journey” as a caretaker. This is second nature to me, these essays of hope and acceptance, formatted in easy to read “steps,” which lead to some kind of catharsis. But I was lying, or maybe just having a really good day, or maybe more so looking to connect about my experience. My actual experience care taking someone dying of dementia, however, is not very relate-able or hopeful.

I can tell you I’ve learned to focus on my perception, let go of expectation, face down uncertainty and be in the moment. I do those things when I remember. I also fantasize about my own death and what I will do to make sure it’s nothing like what I’m witnessing. I fantasize that her death will bring relief and resolution, even though I know it will only bring a new dimension to this lingering grief. And I tell myself, I tell everyone, that this experience brings value. Therein lies its hope — for connection, love and appreciation of life. It’s a borrowed theory to validate suffering, but I honestly think it’s bullshit.

All I really have to offer, at the moment, is honesty. So that’s what I’m offering up.

I’m sorry. This isn’t the kind of essay people publish for a reason. But if the other one gets picked up, I’ll link to it. 

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