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Medical Forum / Diseases and Disorders / Alzheimer's / January 2008

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Support Groups for Caregivers (Legal)

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anselm1009@yahoo.com - 07 Jan 2008 00:36 GMT
A friend in her mid-50's is in crisis.  I work in the social service
field in a part-time capacity, with the elderly (functioning elderly),
but do not know what to tell her.  She's in the gray zone of having
taken care of and "propped up" an elderly woman in severe decline whom
medical and legal authorities nonetheless have deemed competent.  How
this competency has been determined is the source of consternation for
many of us.

Disabled with Post Traumatic Stress Disorder, the daughter became a de
facto caregiver for over eight years and did the 24/7 routine it seems
most of the posts I've lurked and read here involve.  This is a very
rural area, and many people are aware of the scope, longevity, and
commitment she showed toward her "job."  It wasn't possible for an
adult child to take more interest or better care than she took.

In the spring, two younger siblings whose appeal to the mother remains
a mystery to many of us pulled a "coup" (at least that's what the
event sounded like).  One is predatory financially and has been for
years (the stuff of local legends).  The other is plain disturbed, a
highly trained pediatrician who stopped working and drifts from
temporary job to temporary job, and who terrorized the disabled sister
with her credentials.  (Calls to the police, for example, about the
disabled woman's "psychiatric troubles," all of which were dismissed
by LE.)  The mysterious part of this is that neither sibling
demonstrated any ability or inclination to perform the caregiving
tasks the older disabled sister performed so well and happily, and
that the mother developed a hatred of this daughter, particularly
after an emergency hospitalization for stroke or a psychotic episode
in the autumn of '06--which the daughter was responsible for calling
EMTs to the rescue for.  Quite a few of us noticed the more the
daughter did for the mother, the worse the mother treated her (and
warned her at the time that nothing but sorrow was eventually going to
come of it all).

Anyway, one night in the spring, they all--two siblings and mother--
simply threw her out.  Because of her disability, she had the
resources to keep herself from homelessness, but her situation has
troubled a lot of us in the neighborhood specifically because of how
brutal it was.  People such as myself (low-level social service
workers) attempted to do what they could to address the situation--
contact agencies with testimony the mother indisputably required a
caregiver; refer our friend to national caregivers' associations, most
of whom said that even compensated caregivers have no protection under
the law, let alone uncompensated.

One of the reasons the woman was frightened enough to run from the
home she single-handedly maintained was because her mother's rages had
become bad enough so that she was afraid, having a psychological
disability, that if some domestic violence erupted she would be held
accountable and/or arrested, no matter what the parent did.

I'm posting to this group because the archive of posts by caregivers
is just heartrending, and I thought someone might be able to answer:
When an unpaid housekeeper/caregiver/nurses' aide/jack-of-all-trades
is displaced without compensation after years (in some cases on this
group, it seems decades) of service, is there anything at all he/she
can do to "prosecute" family members who sat back and watched it all,
and then moved in for the "kill?"

No, no one has been killed.  The elderly mother seems in a serious
decline, and the predatory sibling extorted about a third of the
mother's investments before taking over the mother's house.  The most
ironic and painful part of this, for those of us who are friends of
the sad daughter, is that the predator is employed in the social
service field, much higher than any of her friends (such as myself).

Thank you.
Baird Stafford - 07 Jan 2008 10:09 GMT
In article
<9ede4ca8-910a-4928-8155-042cc19deaaf@d4g2000prg.googlegroups.com>,

<snip>

> When an unpaid housekeeper/caregiver/nurses' aide/jack-of-all-trades
> is displaced without compensation after years (in some cases on this
> group, it seems decades) of service, is there anything at all he/she
> can do to "prosecute" family members who sat back and watched it all,
> and then moved in for the "kill?"

That depends on the jurisdiction in which she lives, I'm afraid.  I'd
suggest consulting a lawyer, at least, to see if she couldn't at a
minimum recover compensation for the years of service she has put in
(you or another social services person might know of one who would take
her case or at least give her a consultation _pro_ _bono_ if she can't
afford fees up front).

<snip>

Blessed be,
Baird
Mary_Gordon@tvo.org - 07 Jan 2008 15:43 GMT
You know, in a round about way, this might end up being a good thing
for the original caregiving daughter. She was in a no-win situation on
every front, and she had no control over any of it. With her dementia,
the mother is never going to have insight into her own problems, never
going to be thankful or pleasant or easy to look after. She's going to
get worse and worse. Clearly the legal instruments were not in place
to allow the caregiving daughter to look after things, and the other
sibs were neither supportive nor grateful for all her work. At the end
of the day, pretty much every cent that is left will end up going to
mom's care anyway.

Its hard to separate yourself from such a bad situation, let go, move
on, but given her own health issues, and the amount of stress the
whole thing involves, better out of it than stuck in the middle.

Nothing about this is fair or nice, but even at the best of family
situations, AD is neither.

M.
anselm1009@yahoo.com - 07 Jan 2008 23:38 GMT
On Jan 7, 10:43 am, Mary_Gor...@tvo.org wrote:
> You know, in a round about way, this might end up being a good thing
> for the original caregiving daughter. She was in a no-win situation on
[quoted text clipped - 13 lines]
> Nothing about this is fair or nice, but even at the best of family
> situations, AD is neither.

Mary (and Evelyn), thank you for two responses that were insightful,
supportive, and certainly meaningful enough for me to print out and
pass along to my friend.  I printed them as well for discussion and
just got off the telephone with someone who *was* smart but also lucky
enough to have had legal instruments in place, and she agreed that the
significance of having power of attorney could not be underestimated
in the way things turned out for her--180 degrees different from the
woman about whom I posted.

It might be simplistic to put it this way, but not everyone developing
AD is as accommodating as Julie Christie's character in Away From
Her.  In my friend's case, the mother, when lucid enough to realize
she was losing her faculties, would invariably launch into
"intellectual" with the daughter and others reasons to "prove" she was
all right.  There's much that's understandable about this; no one
wants to admit they're getting old, or at least in my case, I always
try to come up with reasons other than age to explain age-related
problems!

But it's been my experience that. just as developing AD doesn't make
all AD patients indistinguishable from one another in personality
traits or likes and dislikes, it doesn't make innately cruel people
sympathetic or change mean people into pitiful.  For a person who is
aware he or she is developing dementia, particularly those for whom
dementia develops slowly, to wilfully deny their children, friends,
companions, spouses, or other caregivers the means by which to
maintain *their* sanity while caregiving (through power of attorney,
custodianship, etc.), is, well, pretty vicious.

Again, thank you for taking the time to post answers.
Mary_Gordon@tvo.org - 08 Jan 2008 01:06 GMT
You wrote:  
For a person who is aware he or she is developing dementia,
particularly those for whom
> dementia develops slowly, to wilfully deny their children, friends, companions, spouses, or other caregivers the means by which to  maintain *their* sanity while caregiving (through power of attorney,  custodianship, etc.), is, well, pretty vicious.

Mary responds:

I learned a nifty new word yesterday. Anasognosia. It's when a person
has brain function impairment such that they can't recognize that they
are unwell. It is what drives families nuts - for example, when a
person with bipolar disorder or schizophrenia denies there is anything
wrong with them, when everyone around them can see that there is
something seriously amiss.

Exact same thing happens to people with AD from the progressive brain
damage when the portions of the brain that control insight and
awareness. Not everyone with dementia is self aware even in the early
stages - my experience is that some are somewhat concerned, but a lot
more seem oblivious to the changes in themselves. They really can't
see that they are impaired. They have no self insight, no recognition
of their decreasing ability to look after themselves. Even when it is
screamingly obvious, they can't see it. And arguing with a person with
brain damage is like that old joke about wrestling with a pig. You get
dirty and the pig likes it. You cannot win. Logic doesn't work.
Reasoning doesn't work. All you accomplish is to get the both of you
all upset - and even when their memories are impaired, and they can't
remember WHY they were upset or even that a discussion took place,
they will remember they are mad at you about something and you are a
poop head!

We were very lucky with my mother in law in that her personality
didn't change much - but some people really do change considerably -
becoming more agitated and easily upset, more suspicious and paranoid.
They also loose inhibitions - not necessarily because they are nastier
at the core, but because the brakes on their mouths are gone. They
will say whatever pops into their heads without thinking about whether
they should say it, or what the impact to the other person might be.

And who knows how well diagnosed your friend's mother was. Frontal
lobe damage can really put the whammy on personality - even when the
person's memory and intellect seem quite intact. The previously staid
conservative patriarch can suddenly start propositioning or groping
every woman he meets, swearing up a blue swarm, or threating to punch
family members. The shy quiet lady can suddenly become very outgoing,
and start spending all her savings buying crazy things.

I've talked about poor little Jean before, a tiny Scots woman in my
mother in law's ward. She used to scream curses to make a sailor
blush, and throw whatever was at hand (including furniture), and her
poor son sadly told us about what a very refined lady she'd been
before dementia. Totally unexpected behaviors that were the complete
opposite of how she'd been all her life.

I guess my point is, you have to be very careful when labelling the
behavior as vicious, since that requires an intact brain that can
consider the situation and plot intentional actions.

Heck, I know lots of people with all their marbles who have made no
plans for the possibility they may be mentally impaired at some point
in their lives, whether temporarily or permanently. I used to work
with a very nice project manager who was still working in his later
70's. Extremely intelligent, capable and well educated man. He had a
wife who was a similar age, and a disabled son who lived with them.
Neither he nor his wife had wills, and neither had powers of attorney
for each other - nor had they appointed anyone else. I guess his
assumption was that he'd get lots of warning before illness, accident
or dementia hit...like, maybe the Almighty would dial in a personal
advance warning, so he could get his affairs in order.

We think we are going to live forever, and that our minds won't go, so
we put it off. And then when we get into trouble, either suddenly or
gradually, its too late, and we're too addled to take care of it.
There is also a big taboo about talking about it in many families. We
all know people whose parents get upset if the subject comes up, so it
gets dropped. Or worse, the parents WANT to talk about it, and the
adult kids don't want to deal with the very idea of losing them.

M.
hilaryjean1956@gmail.com - 08 Jan 2008 10:28 GMT
On Jan 7, 8:06 pm, Mary_Gor...@tvo.org wrote:

> I learned a nifty new word yesterday. Anasognosia. It's when a person
> has brain function impairment such that they can't recognize that they
[quoted text clipped - 65 lines]
> gets dropped. Or worse, the parents WANT to talk about it, and the
> adult kids don't want to deal with the very idea of losing them.

You are a beautiful writer.  It would be great to read a whole book
about your experiences with care-giving because of how your words flow
so intelligently.  I'm the person Anselm posted about, and a lot of
what you say here makes me smile, because I recognize myself in the
pig-wrestling.  I also appreciate learning a new term maybe more
appropriate than one I was in the habit of using quite a bit, that
indicates a demented person's inability to experience or express
happiness.

But I can honestly say that it's only since Anselm's post that
something else, and much darker, has broken through my thick brain.
The first is that no one in the circle of friends or acquaintances who
knew of what was going on ever so much as offered me a room to spend
the night.  This is okay now; I'm fine.  I personally wouldn't treat a
care-giver going through what I went through this way.  In fact, when
Anselm told me his post got responses, and I read them, well--that's
exactly what made me realize how alone I was.  Not how alone I *felt*
(because there never was a day I didn't feel totally alone).  The fact
is no one cared.  Our library system got the Julie Christie film the
week it was released, and I probably was the first one who rented it,
and all I could think of, beside how good the actor who played the
husband portrayed the constantly repressed pain, was that in the end,
this was make-believe.  Of course in that movie, the couple has no
children and apparently no close family or perhaps even close
friends.  But it hurt, and still hurts, like hell, knowing that for
years people knew what was happening in "my" home and never offering
to intervene or help.  Heck, if they didn't intervene for me, they
could at least have intervened out of concern for my mother.

Second, and I'm afraid I'll offend you here, when you've been more
helpful and supportive than 95% of people I know in real life, is that
even if people developing dementia or other very grave mental
illnesses do have a lack of awareness of what's going on, in my
particular case, one of the reasons agencies used the excuse of
competency--and that's what it is, an excuse--is because I freely
admitted that my mother had been troubled for as long as I could
remember (which is about half a century).  She had always fostered
discord between my sisters, now one set, now another, and she seemed
to thrive on this.  As Anselm pointed out so well, the fact that her
hatred of me grew the more I did for her--particularly after the
strange episode no one, to this day, will confirm was a stroke or a
psychotic episode--  Well, the fact that this hatred only got worse
basically was not handwriting on the wall, it was spray-painting on
the wall, big, ugly graffiti.  This lady just didn't like me, always
reminded me how she didn't like me or want me, and it was something I
just lived with.

You were so so SO right in your first post, and I am so very grateful
for Anselm's post and your responses.  The pain of the last year has
been almost more than my heart could take, but I feel that, if my life
has any meaning left at all, by being the object of such undeserved
abuse and escaping it, I will salvage whatever years are still left.

It may tell something, that what I mourn the most at this point are
all the power tools I bought as birthday presents for myself over the
years, converting the pig sty I moved in to in the early 00's the best
a middle-aged female could into a lovely dignified home.

But to say that my mother is completely unaware of what she has done
would be to say she was unaware of fifty years of abuse; I hope God
has mercy on me for saying that at this point, the most I can hope for
is to forget.  I have a feeling more than one care-giver, when it's
all over, one way or another, just wants that blessed forgetfulness,
because the pain can absolutely destroy.

God Bless.
Evelyn Ruut - 07 Jan 2008 17:19 GMT
I have read your post (below) over several times and I am somewhat at a loss
for words.   This is why we ALWAYS suggest that BEFORE embarking on years of
caregiving, one should have legal advice and power of attorney/healthcare
proxy for the person they are looking after.    Apparently this poor woman
did not protect herself from the worst of all possible scenarios, which
according to your comments below, was a time bomb looking to happen.   She
needs a lawyer and she should be ready to pursue this to the fullest.   From
what you say, the greedy siblings will soon exhaust the old lady's resources
and she will be in need of protection and care again soon enough.

It pays to plan for worst case scenarios even if they never happen.....
because occasionally they do.

Signature

Best Regards,

Evelyn

>A friend in her mid-50's is in crisis.  I work in the social service
> field in a part-time capacity, with the elderly (functioning elderly),
[quoted text clipped - 63 lines]
>
> Thank you.
Dennis P. Harris - 08 Jan 2008 17:22 GMT
> I have read your post (below) over several times and I am somewhat at a loss
> for words.   This is why we ALWAYS suggest that BEFORE embarking on years of
[quoted text clipped - 5 lines]
> what you say, the greedy siblings will soon exhaust the old lady's resources
> and she will be in need of protection and care again soon enough.

I differ completely.  I think that in the circumstances set
forth, she should simply disconnect from the entire family, move
somewhere else, and find a good therapist.

It's obvious that she's been abused by this woman even when she
was in "good" health, and that any new illness only aggravated
the problem.  For her own health, physical and mental, she should
simply disconnect.  She is not responsible for her mother's
mental health.
hilaryjean1956@gmail.com - 09 Jan 2008 11:19 GMT
On Jan 8, 12:22 pm, NO_SPAM_TO_dphar...@gci.net (Dennis P. Harris)
wrote:

> I differ completely.  I think that in the circumstances set
> forth, she should simply disconnect from the entire family, move
[quoted text clipped - 5 lines]
> simply disconnect.  She is not responsible for her mother's
> mental health.

Thank you.

It's silly to compare grief when it comes to dealing with aging
parents, no matter whether they suffer from dementia or not.  All I
know is the grief experienced by an adult middle-aged child over the
decline of a parent who never expressed love...  There is no word for
it on the face of this earth.  It's two hells in one.
 
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