Summary

The author reflects on the personal impact of dementia, having witnessed its effects on their aunt and mother, and contemplates their own future with the disease.

Abstract

The author shares a deeply personal account of how dementia has affected their family, detailing the starkly different experiences of their Aunt and Mother with the disease. The Aunt, who had a history of creating fantastical stories, succumbed to sudden-onset dementia and eventually required heavy sedation in a care facility. In contrast, the Mother, described as genuine and loving, spent her final days in a nurturing home-like environment, bravely aware of her condition and determined to fight it. The author, profoundly moved by their Mother's struggle, resolves to confront dementia on their own terms, suggesting a personal commitment to not let the disease triumph.

Opinions

The author perceives their Aunt's dementia as a transition from one fantasy world to another, initially appearing as "Happy Dementia" but ultimately leading to a loss of self due to medication.
The care facility for the Aunt is criticized for its approach to patient management, focusing on keeping patients "tame" rather than providing true rehabilitation.
The author holds a contrasting view of the care provided to their Mother, praising the compassionate environment of her residence and the angelic nature of its caregiver.
The author expresses a strong personal stance against dementia, viewing it as an adversary to be defeated, and is inspired by their Mother's courageous battle with the disease.

I’d Rather Die Than Suffer Dementia

And no, that is not click bait. It is my reality.

If you are reading this, you are painfully aware of the gruesome and insidious disease of dementia. A loved one or perhaps a friend of yours was assaulted by it.

And since it claimed both my Aunt and my Mother, I may have a decision to make some day.

MY AUNT

I don’t mean to make light of this disease when I say my Aunt’s descent to dementia was a short trip. She’d always been what they call a “colorful” person. In my Aunt’s case, colorful manifested itself in her fantasy world, stoked with wild exaggerations and sometimes outright lies. I was never sure if people believed her or were just humoring her. Probably both. But for the most part she seemed to get away with it.

As one example she visited a friend in Palm Beach, took photos of the house, then told everyone back home it was her house, one of many she claimed to own. She owned only one house — an 800 square foot bungalow.

But in the alternate reality where my aunt lived, she was universally liked, even admired, as one might admire an extravagant and quirky movie star. She was always the life of the party. That was the personae she had successfully crafted.

Because her ‘reality’ was dubious to begin with, I didn’t see signs of her dementia until it abruptly assaulted her. Later, a doctor told me that Sudden Onset Dementia was not uncommon, and such was the case with my Aunt.

I’d hired a housekeeper to come in twice a week. Suddenly, my Aunt claimed the cleaning lady was trying to break in each night. She wasn’t. Then my Aunt told me there were people living in tunnels under her house.

And things quickly got worse. All types of delusions. Usually accompanied by paranoia.

My Aunt’s personal doctor for thirty years told me this was not something I would be able to manage. He strongly recommended a care facility. I did that — reluctantly, because it made me feel inadequate that I couldn’t give my Aunt what she needed.

The doctor at the facility declared my Aunt had “Happy Dementia”. But in researching for this article there doesn’t seem to be any such thing. But I was eager to believe his diagnosis.

As one example of her ‘Happy Dementia’, My Aunt told me she was going to India with her boyfriend to get new teeth.

She’d lived in one fantasy world her whole life, and now she was living in another. But it seemed like a happy place for her.

And then the panic attacks started and her happy place imploded.

I can’t begin to describe the terror of watching her terror. And even though I witnessed it I can’t imagine what she was going through. Neither I nor her caregivers could talk her down from these panic attacks.

So they drugged her up.

And that was the end of my aunt as I knew her.

The individual caregivers, mostly Filipino, were always kind, concerned, and thoughtful. But the facility seemed mostly interested in keeping its patients tame. I suspect this is not unusual. And it was evident as I walked the halls and was watched with vacant stares.

The facility was labelled a “Rehabilitation Facility”. But no one got rehabilitated.

No one got out of there alive.

Including my strange and loving aunt.

“Dementia is quite unlike cancer or heart disease or any of those other conditions where you bargain with God for a cure or even just a bit more time.” — Laurie Graham

MY MOTHER

My Mother was the polar opposite of my Aunt both pre and post dementia. Pre-dementia she was the most genuine and loving person I will ever know.

Post-dementia her environment was drastically better than my Aunt’s. That’s because I’d been exceedingly lucky to find a facility for her that wasn’t really a ‘facility’. It was a home. A house with five bedrooms. And if I were to believe in angels, the lady who owned and ran the house would be one. I often joked with her that I’d like to move in there. But that would never happen because many of her guests had lived there for years. She didn’t drug them up. She befriended them. She genuinely cared for them.

And dementia’s onslaught against my Mother’s was also different. Whereas my Aunt was struck with Sudden Onset, my Mother knew what was happening.

And she battled it like a warrior.

I had given my Mother an audiotape of To Kill A Mockingbird. And she began to have hallucinatory conversations with the characters.

And she knew those conversations were hallucinatory.

For a period of three or four days she’d ask me if she’d really engaged in those imaginary conversations. Yes, I told her.

She was fully aware of what was happening to her mind.

And she vowed not to let dementia win.

But of course dementia did win.

Dementia always wins.

So for me, it is those three or four days of My Mother’s awareness that spurred me to write this article.

I will not allow dementia to win.

I will defeat it.

On my own terms.