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Any thoughts, advice about Adult Assisted Living?
QUESTION: Just found this group and thought I'd post. I've been active over the
years in sci.med.vision and feel comfy talking about eyes and vision but
Alzheimer's... it's a different ball game.
My 86 y.o. mom has been diagnosed with Dementia, and I've heard the A
word tossed around lately by docs and nurses. Need to study up on the
differences etc. But for now, I'd like a bit of advice on a complicated
situation.
Mom has been living by herself except when her 86 y.o. boyfriend comes
to visit. Always a vivacious and outgoing person, she lost her driving
privs. about 6 mos ago and ended up in the emergency room several times
in one week due some "fits" or "spells" she's been having which include
various symtoms of vertigo, trouble breathing, crying and B.P spikes.
Each time she checks out fine, although she has had some heart problems
in the past and apparently may have had some T.I.A.s recently. Her main
ongoing problem is short term memory loss.
Anyway, we put her into assisted living near her home, over 1000 miles
from where we 3 kids live at her insistence. She claims she cannot live
without her boyfriend, who is a Canadian citizen, and clearly places him
above family in her set of values.
Well, it seems like she's gotten worse after a month there (more
frequent, maybe more severe fits lately), and the 3 of us have decided
it's time to "bring her home" for more medical evaluations and more
realistic help from us. We have not told her of this, and are planning
more or less an intervention in less than a week.
I'm having second thoughts. I'm worried that we might be causing more
harm than doing good. There are cross-currents that I think may be
linked to some family members moral judgements or dare I say it, even
jealousy, over her lifestyle since dad died 10 years ago.
Any thoughts, advice? This stuff is all new to me.
ANSWER: Dementia is a term like "fever". It just describes a symptoms or a
cluster of symptoms, it is NOT a diagnosis. A person with dementia is
a person with confusion, cognitive impairment, memory loss etc. Those
symptoms are FROM something - whether its Alzheimer's or strokes or a
vitamen deficiency.
I wouldn't take the desire to stay with the boyfriend as a slight. You
know she's confused and has some kind of brain impairment. She's also
likely in a state of panic because her mind is going, and she's become
dependent on him. You can't blame her for clinging to the last real
adult relationship in her life instead of turning to adult children.
The prospect of becoming dependent on your kids must be daunting - and
her reasoner is broken, so she can't think through various options and
the consequences in any rational manner.
Personally, I think you are doing the right thing. She has GOT to be
close to you guys because in the end, you will be the caregivers, and
you have to be physically nearby or it becomes an impossible task. Its
going to be hard enough on everyone, even if she's in the same town 5
minutes away. You also need a proper diagnosis, which means you have
to be able to talk to the doctors, know what tests have been done,
what specialists have been involved, and what they all think. You need
a prognosis so you are ready for what comes next with whatever is
going on.
It doesn't sound like plain garden variety Alzheimer's. These "spells"
she's having sound more like she's having small strokes, or has
something causing seizures - could be all kinds of things. It is
possible to have more than one underlyng disease or injury leading to
the cognitive impairment, but start with the premise that one thing is
the major contributor, and get the doctors working on finding out what
it is. There may be something that can be done, there may not, but you
need to know the story, and be ready for what comes next.
If you haven't done so, I'd also get yourself into a lawyer STAT who
specializes in estate planning, medicaid/medicare planning (including
the look back period), and get some advice. You need to understand how
to set her finances up to make them easy to manage, and preserve as
much capital as possible (and yes, its worth doing - the average
family who gets proper advice on this stuff saves 60K. Her ability to
sign papers is either going or gone, so get your skates on. I take it
you have powers of attorney for financial and personal care
decisions.
Don't fret the move. These things are almost always a one way slide
down the hill, so don't feel you will make her worse. She is going to
get worse whether she is 1000 miles away or 10. Better to be close by,
and know everything was being done for her that could be done, than be
half a continent away, and have it be an expensive struggle to know
what is going on - and also be totally shocked by the deterioration
every visit because you can't see her often enough. Shortly, she won't
know or care where she is, so make it convenient for yourself. Its sad
about the boyfriend, but he's not stepping up to look after her, so he
has to stand aside.
Incidentally TIAs are NOT innocent. They are caused by small strokes
or blockages, and every single one causes brain damage, even if you
can't see it (i.e. even if the sympoms seem transient and seem to go
away entirely after each one). The damage accumulates and causes a
progressive dementia called "multi-infarct" which is the second most
common cause after Alzheimer's.
This is going to be a tough time for all of you, but stay the course.
You do need her where you can look out for her best interest, and that
can't be done at a distance.
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