Dad’s diagnosis of Alzheimer’s stayed
hidden from everyone until I took over the medical administration of my parents
in 2015. Once I found out, there was a deafening silence from most of the
people I know even though virtually all of them would add, “My _____ had
Alzheimer’s…” But there was little help, little beyond people sadly shaking heads.
Or horror stories. Lots of those. Even the ones who knew about the disease seemed
to have received a gag order from some Central Alzheimer’s Command and did
little more than mumble about the experience. Not one to shut up for any known
reason, I started this part of my blog…
Aside from the
conversation I had last night trying to gently remind Dad that Mom had died two
years ago; aside from the conversation yesterday afternoon asking Dad questions
about the “guy I was working with today. He said he’d call but I don’t remember
who he was or what we did…”; aside from the daily calls asking where his dad is
or for “June’s phone number”…I haven’t noticed any real changes in Dad’s memory
or in his experience with hallucinations and delusions… *sarcasm*
First a couple of
definitions: “[An hallucination is]…a sensory experience that is imagined. When
someone with Alzheimer’s has [one, the] person sees, smells, hears, tastes, or
feels (or any combination of those)…something that isn’t really there.” There’s
a difference between this and a delusion: “…a delusion involves a set of false
beliefs. An Alzheimer’s patient…may be overwhelmingly suspicious of the people
around them…”
I haven’t seen Dad
with delusions often, though that issue crops up occasionally. It’s usually
easiest if I go to him and we just sit around and shoot the breeze. He relaxes,
knows I’m around and can get there fast if I need to, and he recognizes me both
by face and voice. Seems to calm him down. I’m sure my siblings have the same
experience – I’m also sure that the people who work there DO NOT have that
experience.
As for the
hallucinations…o, man…I deal with that on a daily basis, sometime even hourly.
The site highlighted below had this to say, “…people with Alzheimer’s
continually struggle to make sense of the world in the face of their declining
cognitive function, and it’s a profoundly lonely and isolating experience.”
Dad’s sense of
isolation is what I’ve been dealing with A LOT lately. I know we’re doing
something right though, because, “The Alzheimer’s Society report on loneliness
found more than one in 10 people spoke to friends of family face-to-face less
than once a fortnight. This type of contact is important because these
conversations provide visual and sensory clues which can help them form
memories more easily.” We all talk to Dad often, I call him every day; I’m sure
the others do as well – or close to every day. So there’s one good thing.
“As people get
older, they may find that their friends and family move away, go to live in
residential homes and pass away. This can lead to a shrinking of their social
circle and less contact with people. On top of that, if they don’t have a
particularly meaningful relationship with their neighbor – which can be common
in larger towns and cities – it can lead to loneliness. Nearly a quarter of
people with dementia admit they speak to their neighbor less than once a month.”
I think this has
been hardest for Dad…my mom was THE quintessential socialite. She was friends
with everyone; she was thoughtful, very funny, and adventurous – she loved “going
places” and she and Dad travelled extensively after they retired. But MOM was
the one who socialized. Dad pretty much sat in the corner and if someone came
to talk to him, fine. But someone didn’t…well, he griped about how mean people
are. He does that to me now. Everyday. Always.
The thing is, is
that I feel PERSONALLY bad because of it; like I’m somehow causing Dad’s loneliness
or something by putting him in the memory care unit; by taking away his car; by
not doing “enough” for him. I have NOT dealt with that, though I figure the
feelings are somewhere between guilt and shame. I also realize that I’m not
only not responsible for how Dad feels, I can’t DO anything about it…even if I
took him on a wild day party (like last year in April when my son and his
family were in the US on a month-long leave from their post), he doesn’t
remember it. In fact, if I’d taken him drinking last night with all of his old buddies
(half of whom are dead), he STILL wouldn’t remember today what we did!
OK – so I go back
to what I discovered a long time ago: We can no longer make memories, we have
to make MOMENTS.
And I have to deal
with my shame/guilt thing…ready, set, go…
Resource: https://www.alzheimers.net/hallucinations-and-delusions/,
https://www.unforgettable.org/blog/only-the-lonely-dealing-with-loneliness-and-isolation-in-dementia/
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