‘It comes for your very soul’

July 27, 2024 12:35 AM

How Alzheimer’s undid my dazzling, creative wife in her 40s. We met on the dancefloor of a nightclub in 2004. I was 32, she was about to turn 35. Far too old for a place like that, but we were reliving former glories in honour of mutual friends – a last glance back at our careless youth. When the management turned us out after a long night of carousing into the next stage of our lives, Vanessa scribbled her number for me on a piece of paper. How she would have loved to be able to do that only 15 years later. ~~~

Very powerful Guardian Long Read written by Michael Aylwin

Gut wrenching, beautiful story of human love, about as good as it gets.

Strong reminder of Still Alice, a spectacular book by Lisa Genova (TED Talks)


Alzheimer's Disease International

Infographic showing 12 modifiable risk factors for dementia

Early Onset Alzheimer's -- Many people assume that Alzheimer’s disease and other causes of dementia only affect older people. In fact, about 1 person in every 1000 below the age of 65 develops dementia. While rare, it can affect people in their 40’s and 50’s. Any dementia beginning before the age of 65 is known as young onset dementia (or early onset).

Vanessa, the women in the Long Read -- Early Onset. Same thing for Alice (in the book "Still Alice") -- Alice, an amazingly accomplished, brilliant woman, her Alzheimer's began to eat her up at 48 or 49. That book is a horror story, in that she knows what is happening to her, powerless to stop it.
(Yes, I really do love that book. The author read it on Audible -- highly recommended.)

~~~~~

Lots of Alz on the paternal side of my family; six kids, 4 ended their lives suffering Alz. None of them were early onset, but once it got hold of them it took them fast and nasty. Except for my fathers twin sister, she lost the thread but no pain, no fear, many young people were thought to be people from her childhood, etc and etc. I think I could/can get a blood test to see if any of it is in my body but I'd rather not know. I'm not even sure that all Alz would show up in a blood test, I think that they can find early onset from a blood test but I'm coming on 70 years old, a bit late for early onset.

About ten years ago I noticed that I was misplacing things, losing things, not remembering peoples names for chrisake. I was really concerned, I to0ld my sponsor that I thought I had Alz, he looked at me and said "You don't have alz. You're 60. It sucks. Welcome to the show." And I think he was/is right; pretty much all my friends have fading memories also. It's not that I don't have the information; it's just that I can't access it immediately.

Anyways. I hope you find the longread as bittersweet fine as I did.

posted by dancestoblue (13 comments total)

Oh mate.

My MIL has Alzheimers, there but moving very slowly - if you didn't know her you'd think she was a perfectly fine old lady, unless you kept talking or met her later and realised that she retained almost nothing.

My dad didn't have Alzheimers but an unholy cocktail of Lewy body, fronto-temporal and maybe micro strokes as well.

It is so hard to see them fade and become less, and harder yet when you realise that people you depended on now depend on you.

To have this happen at such a young age is even more cruel. At least my Dad had a full, rich life before it got him, much to reflect on while he still retained memories, and a legacy. To go out when you could have had decades more to do and be is hard, as all untimely deaths are, but worse to endure the erosion of capability and self.

I understand why people want to try and salvage something good from the horror. I could tell you that Dad's mood and outlook actually improved as he got worse, because once he couldn't remember how intelligent and capable he had been, and lost the capability to ruminate, he lived in the Now and stopped worrying and became happy again. But it's shit, and you can't gild it.
posted by i_am_joe's_spleen at 1:32 AM on July 27 [16 favorites]

This was a tough read.

Written without sentiment, and I think respectful of the person suffering, as well as showing the care giver's perspective, that's always a hard needle to thread.
posted by Zumbador at 3:35 AM on July 27 [2 favorites]

My mom had Alz. As it progressed, things just got harder and harder to manage. If you are of the mind that living a long life would be fantastic, caring for a parent succumbing to Alz will quickly make you reconsider. I cannot imagine a worse way to go.

Make sure your parents and/or loved ones have all their papers and accounts in order. Get those POAs and medical POAs done. Keep them in your hands, not theirs. You do not want to be left scrambling to take care of everything after they’ve lost contact with the world.
posted by Thorzdad at 3:39 AM on July 27 [12 favorites]

My mom was diagnosed last summer and between the diagnosis until a recent visit, it's shocking how fast it's progressing. My younger sister is POA as she is the child who lives five minutes away as compared to me, who lives in another country. She really is doing the best she can with limited support from friends and her husband, but we are both afraid of the future. The US does us no favours with the cost of very definite LTC Memory Care homes she will have to reside in at some point.

Nothing prepares you for a sick parent. You watch one of the strongest kindest people in your life go from being capable to repeating the same information and having sad struggles about the most basic things. I have lost the mom that I used to have long fun rambling conversations with on the phone. My sister has lost the mom who was her support during tough times with my wayward niece. Alzheimer's sucks so hard. It hurts so bad. And we haven't gotten to the worst of it yet.

I read this story earlier, thought about posting it as an FPP, but it hurt too much to do so. Thanks, dancestoblue.
posted by Kitteh at 4:21 AM on July 27 [7 favorites]

Didn’t read; too existentially terrifying.
posted by Horace Rumpole at 4:43 AM on July 27 [25 favorites]

My paternal grandmother, who was always a sort of quiet person, just became more and more quiet until she stopped talking for at least two years, then passed away peacefully. I was not close to that side of the family, but I learned it was dementia, not Alz. Sad to see, but she made it to 90.
posted by SoberHighland at 5:52 AM on July 27

I can't do it. I'm simply not going to be able to read it. The pain is too close to home: I lost my stepfather to Alz, and of all people to be stricken he was the cruelest. His mind was all he had in his life, for the most part.

Early in life, he had to spend time in an iron lung. His respiratory system was just that fucked. It never really got that much better, and throughout life he was pretty small and frail. Well, small and frail and fucking brilliant. MacArthur grant. Early work on machine translation in the 1970s—this is shit we were working on around the dinner table when I was a little kid, mad citizen scientists—and a career in translation of Russian and Ukrainian scientific journals that started well before the wall fell.

The man possibly read more papers than anyone alive. Often, he had to read related papers in English in order to understand the nuances of the foreign paper. Oh, did I mention he didn't know a word of Russian? Or Ukrainian? He deduced all this shit from first principles when he started in the late 60s.

A poet. A gardener. A hermit. A madman.

Anyway, I'm blessed to have spent my time around a lot of very smart people. People with Wikipedia pages, people who should have them but never will, people who don't want them. Minds that outclass my own by an order of magnitude and more. I'm just... lucky as hell to have the chance.

Over them all walked this titan, and I saw his first footstep falter. Then another. It took several years. First, he would just lose context. Then, well, you know, slow progression. Medication helped make the best of that slope. Finally, only one word. He could articulate only one word to express any sentiment, any meaning, anything at all.

"Help?"
posted by majick at 7:07 AM on July 27 [34 favorites]

I lost my grandma to dementia. I was young enough to not be exposed to all of it - my dad had to manage the worst of it - changing her diaper, bathing her. Before she lost language completely she would just ask to go home, even though she was home. "I want to go home" - over and over and over.

Thinking about losing someone again like that keeps me up at night. It scares the ever loving shit out of me.
posted by kbanas at 7:24 AM on July 27 [4 favorites]

My aunt, who was also my godmother and my mom's best friend from high school til the day she died, deteriorated slowly at first. Then there came a time where it was like she fell off a cliff. She could no longer stay in independent living, assisted living wasn't an option, so she ended up in a memory care facility.

I remember the day she didn't recognize me at first. When I left that day, I sat in the car and cried for a while. I looked around and realized I wasn't the only one.

She passed during the height of COVID. The facility was closed to visitors. I felt bad not seeing her in her last days but maybe it was for the best.
posted by tommasz at 1:08 PM on July 27 [7 favorites]

This is how it was with my Dad. I forgot I had written this or I would have linked in my first comment.

He went during lockdown. They wouldn't let me visit the rest home because he wasn't dying. They would hand him a phone, and he would forget he was holding it and talking to me, and drop the handset, and that would be that. And then he was dying, and I sat with him. He rallied at one point and the speech and language therapist offered him some flavoured goop to see if he could swallow. "How is it?" she asked. "Very palatable thank you" he replied, his vocabulary and courtesy holding out until the very end.
posted by i_am_joe's_spleen at 2:30 PM on July 27 [14 favorites]

Both my parents had brain issues, dad alt and mom dementia. Dad's was slower acting and mostly affected his short-term memory, mom's was ultimately more brutal and hollowed her out from inside more, if that makes sense. Both released from their suffering now.
posted by maxwelton at 4:51 PM on July 27

FYI: Anyone wishing to read more great writing from the inside of experiencing it with a loved one owes it to themselves to read the linked writing from i_am_joes's_spleen.

Great writing.

And yet again another humbling from the membership here -- so many interesting people, such a collection of intelligence, and good spelling also. I've read upwards of 72 million words written on this site by i_am_joes_spleen having no idea who is behind the mefi nick. Having just visited the site, I know I must pay close attn to every/any word written, even if for no other reason that we share the same first name........

But fact is that it's just another reminder to pay close attn to all here.
posted by dancestoblue at 6:44 PM on July 28 [1 favorite]

that's so nice of you to say so, thank you.
posted by i_am_joe's_spleen at 9:27 PM on July 28