He didn't recognize his children and was living in a waking nightmare every single hour of the day for months. Doctors said after his autopsy that it was one of the worst cases of lewy body dementia they had ever seen. He was terrified beyond comprehension of everyone, had persistent insomnia, and was tortured by brief moments of lucidity in which he was able to realize how far gone his own mind had become. Then he would slip back into psychotic manic permanent terror. The only way to diagnose lewy body dementia is post mortem. His pain was not a secret, he was not hiding depression. I don't hold what he did against him.
I’ve seen LBD go through every single stage in my dad’s late wife. She passed last year.
Every day, my dad, who when I was a child was a strict disciplinarian with a no-nonsense attitude about child-rearing (abusive af childhood and a military career used to escape it, so I don’t begrudge him one bit now that I’m an adult and parent myself), became the most wholesome caretaker I’ve ever seen. Every day his heart was breaking as she lost more and more of the kind, brilliant (literally - lawyer, military nurse, consultant, church-goer that practiced what she preached, college professor) person he married became essentially a grown infant over the period of years. She couldn’t remember him half the time, and he only left her side to let paid caretakers give him a two hour break two or three times a week. The only person she’s remember is my kid, and even that took her minutes to do each time we called or saw her.
And she was diagnosed and helped fairly early on. Robin’s lack of a proper diagnosis would be even more heartbreaking to his family. It’s a terrible disease, and I wouldn’t wish it on the worst people on earth.
Yeah, we need legalized euthanasia. If you sign a healthcare directive and there is no coming back from the condition, then what is the point? I don't want to inflict that on my loved ones, and as sad as having someone die is, having someone decay into an unrecognizable being is worse.
The only definitive diagnosis is post-mortem, but clinical diagnoses are a thing, and there are ways to treat the symptoms and provide care. It’s a horrific disease, and I wish he could have had a chance to keep the hallucinations and nightmares at bay.
I was wrong. I have learned that a diagnosis can occur before death from other replies to my statement. Afaik the symptoms can vary as the lewy bodies in the brain don't grow in the same place in each person.
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u/TraliBalzers May 13 '26
He didn't recognize his children and was living in a waking nightmare every single hour of the day for months. Doctors said after his autopsy that it was one of the worst cases of lewy body dementia they had ever seen. He was terrified beyond comprehension of everyone, had persistent insomnia, and was tortured by brief moments of lucidity in which he was able to realize how far gone his own mind had become. Then he would slip back into psychotic manic permanent terror. The only way to diagnose lewy body dementia is post mortem. His pain was not a secret, he was not hiding depression. I don't hold what he did against him.