
Field Notes from my Dementia - samclemens
http://lithub.com/field-notes-from-my-dementia/
======
Mz
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.

------
gerdesj
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."

~~~
ozzmotik
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 :)

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ironic_ali
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".

------
jacquesm
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.

~~~
bigiain
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.

~~~
mcphilip
>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.

------
et2o
I find articles written by people in early stages of dementia almost too sad
to read. Few conditions rob us our humanity like dementia.

~~~
girvo
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.

~~~
mcphilip
>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](https://m.youtube.com/watch?v=90b1MBwnEHM)

~~~
pmoriarty
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...](https://en.wikipedia.org/wiki/Terry_Pratchett:_Choosing_to_Die)

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

------
dev1n
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/](https://www.alz.org/)

------
throwaway3637
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.

~~~
leggomylibro
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.

~~~
Mediterraneo10
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.

------
thinkpad20
> 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.

------
averagewall
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.

------
srean
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.

