Field Notes from my Dementia | Hacker News Reader

Field Notes from my Dementia

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122 pointssamclemens28 comments

My father had Alzheimer's for quite a few years before he died. He did not go at all quickly. He continued to be able to fool strangers into thinking he had his faculties, but he would talk to me on the phone, clearly not knowing I was his daughter, and try to be glib and witty and make small talk. This no doubt worked on strangers, but the fact that he did not know I was his daughter was a bit hard for me to miss.

His death was very slow. He basically starved to death ever so slowly. The one photo I saw from his funeral was unrecognizable. He had always been a big man with a round face. He was basically a skeleton.

I think the entire family was basically glad to see his suffering at an end. We had already lost him years earlier, but now he could finally rest.

I've just gone through an, admittedly short, HN commentary and felt compelled to hit the UV button on every single comment - I'm usually pretty stingy in that regard.

The article is beautifully written and I defy anyone to read the quote below to not be touched in some way. To then realise, later on, that the writer is also afflicted with Alzheimer's is very poignant.

This is a very touching and tender reflection of what a mind and intellect can be and what the gradual and cruel destruction of self means to the sufferer.

"As Murdoch’s illness continued to crumble away her language and reason, she gradually abandoned attempts to write. Soon sense departed from her speech as well—except to him who loved her deepest and longest. There came a day when Iris laid her hand on Puss’s knee and said, “Susten poujin drom love poujin? Poujin susten?” Bayley needed no more help than her hand gentling his cheek to distill from this jumble the grammar of love."

i have to certainly agree. the article itself was a thing of beauty, so poignant as to be a work of art in and of itself. the suffering that individuals experience with alzheimers is a great sorrow in this world, and it's always so awful to hear of it, but yet it fed such a powerful expression and brought so many disparate people together in the HN comments section for the article to express such beauty and vulnerability with regards to their own suffering and experiences in life related to the topic at hand. i am fairly stingy with up votes too but I think just about everything said here deserves one as well :)

I admitted my mother to a care home the day before yesterday. Went to see her after her first night and she seemed shocked to see me initially, but settled after a few minutes. She knew who I was and asked where she was and why she was there, I told her she'd been getting more confused and wandering, and leaving the gas hob on with no flame. It was for her safety and better care, and more interaction with people and staff, with activities and regular meals. A little later, she asked if I had a mother or siblings in the area.

I've been living half way round the world for the last 15 years and other than irregular visits have watched her decline from afar. From getting confused on the phone, to not knowing (from what her home carers said) that the phone ringing meant anything other than an annoying noise. To getting picked up wandering the street by the police at 3am in her nighty.

A friend called not long after I left the care home, he has a way of putting a lot of things into a single sentence and said, "ah yes, an emotional rollercoaster, wrapped in guilt".

If there is anything that scares me it is dementia. My grandmother suffered from a mild case of this and it really affected me. I seriously hope to side-step this later in life, either by luck or by choice.

I was grieving for my "lost" father for a couple of years before he died. Fucking heartbreaking for me, but whoever he'd turned into seemed at peace and satisfied with life for almost all of that time.

>Fucking heartbreaking for me, but whoever he'd turned into seemed at peace and satisfied with life for almost all of that time.

I've witnessed the flip side of this: a grandparent with a hard life plagued by worry amplified by the confusion of Alzheimer's. Slowly wasting away for a few years. She did love her sons and grandkids playing piano up till the end, though.

It is truly a beastly disease.

I watched it destroy my grandfather as he struggled to cope with losing my grandmother one day at a time for years.

Some things are worse than death.

All diseases are just variations on normalness. Nobody remembers 1000s of individual people but we don't feel sad that we can only remember 100. None of use are super intelligent but we cope with what we've got or even feel great about it. Most of us feel emotions more weakly as we age beyond our 20's but we don't feel sad.

By choice, if all else fails, definitely. My grandfather and my father made that choice when the going got too tough and pointless. I certainly intend to go the same route, should my brain or other parts of my body one day turn into unrecoverable disaster zones.

Sorry if I'm being thick, but do you mean they committed suicide?

https://en.wikipedia.org/wiki/Euthanasia

This can get pretty hairy from a legal point of view even in places where it is permitted when the patients faculties are diminished.

I do indeed.

I find articles written by people in early stages of dementia almost too sad to read. Few conditions rob us our humanity like dementia.

Agreed. I have tears in my eyes after finishing this one. I cant imagine living through it myself. My mind is my everything... I would likely consider suicide, and I don't know whether that makes me weak or silly, but I can't see much of a way out with a disease like this.

>I would likely consider suicide, and I don't know whether that makes me weak or silly...

Up till the end of his life after suffering from early onset Alzheimer's, Terry Pratchett argued that such an option is certainly not weak or silly.

Here's a reading of his essay called Shaking Hands with Death [1] by a good friend of Pratchett's. His whit and charm and spirit really shine through this essay dictated to his assistant years after he had lost the ability to type.

Terry Pratchett has long been my favorite author, but his bravery while battling Alzheimer's has made him my hero...

[1] Terry Pratchett: Shaking Hands With Death

https://m.youtube.com/watch?v=90b1MBwnEHM

Terry Pratchett also made a great documentary called Choosing to Die.[1] Here's a trailer for it: [2]

[1] - https://en.wikipedia.org/wiki/Terry_Pratchett:_Choosing_to_D...

[2] - https://www.youtube.com/watch?v=xsvwhuOSApI

at least it wasn't early onset. I'll happily take the onset of this disease at the age of 77 if it means I don't need to suffer from it at 50 like my grandfather.

Is the last paragraph just a poetic ending or a demonstration of wandering mind affected by dementia? The sentence can be parsed and seems to have a discernable meaning but the associative leaps and comparisons seem highly unusual to me.

I honestly can't tell. Perhaps because I'm a non-native English speaker with a lack of subtlety when it comes to literature.

It's a bit purple, but it reads fairly cogently to me; it's just a very long run-on sentence.

That might be attributable to dementia, or a deliberate style choice; I'd kind of lean towards the latter given that plenty of the preceding article is expressed in clipped, curt statements without much excessive detail.

It is sad, though. The writing of Terry Pratchett puts this on somewhat depressing display, with many of his later novels lacking the punchy dialogue and tight focus of his early and mid-career works. They feel a bit more floaty, out-of-focus, and characters are more likely to pontificate than demonstrate a point through action or indirect reference.

They're still good stories written by a very talented and creative author, but you can tell that he was having more difficulty with it towards the end.

Similar to Pratchett's later books -- and Iris Murdoch, as mentioned in another comment -- are the late works of the composer Iannis Xenakis. As long as a decade before he was forced to withdraw from public due to dementia, his music underwent a very peculiar stylistic change where the immense complexity of the earlier pieces (Xenakis built his career on combining music with his work as a modernist architect and erstwhile student of maths) gave way to a very repetitive, single-minded sort of texture.

I think its an allegory. The cycle of seasons, of leaves hiding their brilliance within an overbearing green, finally revealed at the end but clinging on to life by a small thread, to be blown away to become worm-food, and the life force from which the next generation is born.

You managed to get through the first three or four paragraphs unscathed and got to the end and then manage to come up with a comment that is extremely cogent.

In a second language.

The final paragraph is probably just as intelligible to you as it is to me - it says things that are just a little bit beyond mere language. The words and phrases have meaning but the sense that is conveyed is way more than the symbols themselves.

Purple prose? - fair one; but I think that, given the preamble, we get a sense of sheer and utter sense of potential loss, combined with a tenacious desire to be.

It is utterly heart rending.

"it says things that are just a little bit beyond mere language. The words and phrases have meaning but the sense that is conveyed is way more than the symbols themselves."

This describes how I feel reading a lot of Cormac McCarthy's writing.

Just FYI for this thread,

The Alzheimer's association [1] deals with forms of dementia and brain diseases outside of just Alzheimer's. If you or anyone you know has concerns feel free to call their help line. A good chunk of their services revolve around helping the less fortunate with medicare applications and finding appropriate care for those who can't afford it.

[1]: https://www.alz.org/

> During the year Murdoch was diagnosed with Alzheimer’s, she composed a note that was downright ominous. “My dear,” she wrote, “I am now going away for some time. I hope you will be well . . .” She set aside the sheet, took up a second one, and wrote, “My dear, I am now going away for some time. I hope you will be well.” A third sheet consisted of pen marks that did not add up to any intelligible lines.

Reading this part sent chills down my spine. If anyone has seen the movie Antichrist, they might recall a particular scene that echoes (and was perhaps inspired by) this anecdote. I truly think losing ones mind is one of the most terrifying things to imagine -- the very fabric of reality coming apart at the seams.

These day I struggle to name things, everyday mundane things. My vocabulary is seriously diminished. It could be sleep. I am pretty sure lack of quality sleep is playing a role, but it is worrisome nonetheless. What gave me some reassurance was coming to know that such symptoms are not that rare.

It's great that somebody studied her writing to map the progress of the disease but it's a pity they only sampled three books so it gives no insight into the rate of decline or how early it began to diverge from normal age related mental decline.

".. linguistic creativity dwindled markedly over an almost 20-year period" is based on comparing one book at the beginning of that period and one at the end. We have no idea if it really dwindled over 20 years or all happened quickly on the final year. This is what's most interesting to me - both the possibility of very early diagnosis and being able to predict the rate of decline so you can make informed decisions about how to manage your life if you've been diagnosed.

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