
What Alzheimer’s Feels Like from the Inside - dnetesn
http://nautil.us/issue/31/stress/what-alzheimers-feels-like-from-the-inside
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DanBC
This is a great, but very short, account of what some people with dementia
illnesses go through.

There are some things that didn't get mentioned: stuff like how to you talk to
your family about DNR and other advanced directives? When do you stop driving?
When do you hand over control of your money to someone else? A lot of advanced
directives will say something like "no heroic measures". Doctors hate that,
because it doesn't give them nearly enough information to make a decision
about care. Giving more detail is important. They may not be able to obey your
instructions, but they need to consider them and have a good reason for
ignoring them.

It's a really good idea to have those conversations now and get some kind of
plan in place because at the time it's going to be tough enough for everyone
anyway.

Here's a description of some advice from an English perspective:
[http://www.gloucestershireccg.nhs.uk/gloucestershires-
dement...](http://www.gloucestershireccg.nhs.uk/gloucestershires-dementia-
handbook-inspires-australia/)

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coldpie
A close family member of mine was diagnosed with Alzheimer's last year. He's
still doing well, he remembers who everyone is, but it's hard discussing even
simple strings of logic with him. He just gets lost and we have to double-back
to review the thing we discussed 30 seconds ago. My mom related a story about
having lunch with him, where he had both a bun and a brat on his plate, but
just sat staring at them trying to figure out what the proper thing to do with
them was. I'm afraid to see what happens as it advances.

Articles like these are nice to read. I don't find it a comfortable subject to
talk about with my relatives, and especially with him. But hearing it from the
perspective of a sufferer helps me understand what's happening and how to act
around him.

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Diederich
This is one of my core fears.

I know now that it is very likely I will live well into my 80s, perhaps even
90s. My genetic background strongly indicate a long life span, and I have been
taking pretty good care of my body for a long time.

So there is an excellent chance that my body will outlast my mind.

And that just sucks. In my remaining decades, I hope that science and
technology will address this. There seems like a good chance of real progress
in that timeline.

~~~
tamana
If that worries you so much, you could treat your body more riskily to even
the odds.

~~~
dilap
I'd be worried about general rough-lifestyle stuff affecting your brain's
health as well. It is ultimately also a physical organ. Also, being unhealthy
is not pleasant in general for many people.

Another approach might be to just slowly increase enjoyable risky behavior
that's more or less all or nothing in its bad effects: driving fast, base
jumping, motorcycle riding, helicopter piloting...

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jnaour
Probably one of the worst disease for family and closest ones. You see someone
you know and love be more and more a stranger to you and a stranger to
themselves.

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lkrubner
I'd strongly recommend the novel "Still Alice" by Lisa Genova. A very sad but
accurate portrait of Alzheimer's:

[http://www.amazon.com/Still-Alice-Lisa-
Genova/dp/1501106422/...](http://www.amazon.com/Still-Alice-Lisa-
Genova/dp/1501106422/ref=sr_1_1?s=books&ie=UTF8&qid=1451402793&sr=1-1&keywords=still+alice)

~~~
j_s
[http://www.imdb.com/title/tt3316960/](http://www.imdb.com/title/tt3316960/)
(2014) 7.5/10

[http://www.rottentomatoes.com/m/still_alice/](http://www.rottentomatoes.com/m/still_alice/)
88%

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afsina
Someone I know died from Alzheimer after suffering like 4.5 years. To me, this
is one of the most horrific diseases to die from. It gives a great deal of
suffering to people around you as well. I remember recently reading about a
link between Alzheimer disease and fungal infection in brain but I guess it
was just another false hope.

~~~
sokoloff
My grandfather passed from Alzheimers this summer. It is awful to say, but his
passing was a relief to many, as he effectively died a couple years prior.

This disease is proof positive that there are medical fates far, far worse
than death.

~~~
coldpie
As someone about to go through this with a close relative, and with a chronic
illness myself (type 1 diabetes), I often think of euthanasia. I haven't come
to any conclusions yet.

~~~
tamana
Active euthanasia (stuff beyond DNR) for mental conditions is a non-starter
because it is impossible to get a valid statement of the patient's
preferences.

You can't write a valid living will that says "kill me if I forget who my wife
is twice a day for a week".

~~~
coldpie
It's a difficult problem, to be sure. I feel like what sokoloff went through
is maybe not the optimal solution. I don't know.

~~~
sokoloff
What I went through was vanishingly small compared to my grandmother and
father. It cemented in my dad a resolve to self-euthanize at the first sign of
a progressive mental degradation. Of course, the first sign is "too early" to
be optimal as well, but no one wants to wait until it's too late. In a strange
twist of fate, he experienced this fall a temporary but rapid decline in
function due to a treatable (and subsequently treated) physical condition that
manifested itself over a 10 day period. Now recovered, I'm sure he's glad he
didn't off himself.

I don't have any easy answer, even having had these experiences. There's
little question my grandfather would not have wanted to live as he did the
last 18 months of his life, but still epsilon chance he prefered whatever his
life was to nothingness and even if not, was 17 or 19 a "more right" answer?
How do you distinguish "routine" "what did I come downstairs for again?!" from
more serious progressive degenerative diseases? Who knows...

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vive-la-liberte
Title is probably a reference to
[http://lesswrong.com/lw/no/how_an_algorithm_feels_from_insid...](http://lesswrong.com/lw/no/how_an_algorithm_feels_from_inside/)
(unless it in turn is a play on another title).

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jack9
The spider-like hallucinations are classic alcohol-withdrawl symptoms not
directly associated with dementia or alzheimer's.

This story is on a number of sites, so it comes up in google searches, as the
same report from the same guy.

~~~
DanBC
Hallucinations are a part of dementia for some people. Tactile hallucinations
can be present in Alzheimer's.

[https://www.alzheimers.org.uk/site/scripts/documents_info.ph...](https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1408)

> People with dementia are often thought to be hallucinating when in fact they
> are making a mistake about what they have seen (see 'Visuoperceptual
> mistakes' above). There are some specific forms of dementia, however, where
> hallucinations are more common. These include dementia with Lewy bodies and
> Parkinson's disease dementia. Hallucinations can also occur in Alzheimer's
> disease.

> Hallucinations in people with dementia with Lewy bodies usually take the
> form of brightly coloured people or animals. They often last for several
> minutes and can occur on a daily basis. Around one in 10 people with
> dementia with Lewy bodies also experience smells that are not really there
> (known as olfactory hallucinations). People with dementia may also
> experience auditory hallucinations (hearing sounds or voices) and tactile
> hallucinations (sensing things that aren't there).

This was the first Google result for [dementia hallucinations], although I
guess my filter bubble has been heavily trained.

~~~
jack9
Hallucinations are a common symptom of dementia, but not the type he
described. The type he described are particularly common for another
condition.

~~~
DanBC
This is what you said:

> The spider-like hallucinations are classic alcohol-withdrawl symptoms not
> directly associated with dementia or alzheimer's.

You said "not directly associated with alzheimer's".

That's incorrect. Some, but not most, people with alzheimer's experience
tactile hallucinations.

Here's another cite:

[http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105559/](http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105559/)

> Alzheimer's disease

> The prevalence rates of hallucinations in Alzheimer's disease (AD) range
> from 12 to 53%. Hallucinations in AD most often are visual, although
> auditory, tactile and olfactory hallucinations have also been observed.
> Hallucinations are most prevalent in the moderate to severe stages of the
> illness and do not seem to occur at the end stage of the disorder.

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peter303
I've heard there is a variety of emotional responses by the patient.

Some are frustrated by former simple things becoming too hard to do.

Some are angry at themselves for failing. Or angry at others who think others
are playing tricks on them.

Some of the excess emotion may come from the degeneration progressing at
different rates in different parts of the brain. Especially if the frontal
lobes lose their inhibitory powers.

Some report a sense of peace. Life is simpler and more basic.

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fizgig
This story reminds me of a heartbreaking NPR piece I heard about a decade ago.

A man learned he had inoperable brain cancer/tumor (I think), so he began
taking daily audio journals. His widow released some of the recordings to be
played in the piece, and they illustrated his mental decline over time.

It was a very touching and sad story, and I've had a fear of a similar fate
ever since.

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petke
As someone put it. I never knew, you die one piece at a time.

This disease scares me. Dying, head first like that. Its common enough that it
will probably happen to you or a loved one. Its easier not to think about.

