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Medical Forum / Diseases and Disorders / Alzheimer's / July 2006

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Responsibility comes crashing

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Kate - 18 Jul 2006 16:56 GMT
And it all comes down to me doing something.

A week's vacation with the entire family.
A million instances of Mom losing function.
A few screaming fights between siblings late at night.

Everyone acknowledges there is a problem.
No one seems to have an implementable plan.

I am here.  I am for the most part alone, although offers of "support" from
my brothers were appreciated (if not for the fact that they are somewhat
superficial).

There is another 'confrontation' in the stars for me and my mother this
week.  Please just think about me, and hope that I can steer her towards
help.  My life is being consumed by the pain of loss, and the sure knowledge
that I am not strong enough for whatever is coming.

kate
Tumbleweed - 18 Jul 2006 17:52 GMT
> And it all comes down to me doing something.
>
[quoted text clipped - 15 lines]
>
> kate

kate, sorry, I cant recall all the details from before. Is it your mother
that wont get a diagnosis? Can you just walk away? tell your brothers you
are doing so? Or not, just wait until they are there and then leave? That
way, you force a decision on them. If it gets beyond your ability to cope,
walk away, then call social services, or your brothers, or both. And stay
away until its fixed. Its quite likely, ythough I dont know in your case,
that other people dont quite realise how bad it is unless they are doing it
24x7. Have you talked to local social services?

What is your plan, and why isnt it implementable? Because your mother wont
stand for it, or your brothers? I think in many peoples experience here,
there comes a time when what you want gets forced on the parent,
irrespective of their wishes. Can you ask to have her committed and force a
confrontation?

I know its not that simple, but as you yourself seem to indicate, something
is going to break, whatever happens, so dont let it be you.

Signature

Tumbleweed

email replies not necessary but to contact use;
tumbleweednews at hotmail dot com

Evelyn Ruut - 18 Jul 2006 18:03 GMT
> And it all comes down to me doing something.
>
[quoted text clipped - 15 lines]
>
> kate

Dear Kate,

We are all behind you here, and we have all been down this road ourselves.
Different players, but the basic scenario is the same.

Stay strong and keep your resolve.

None of us knows how strong we really are until it comes down to it, and we
so often surprise ourselves then.

It will all work out somehow, and you are in our thoughts.....

Signature

Best Regards,

Evelyn
(to reply to me personally, remove 'sox')

Torpedo - 18 Jul 2006 19:35 GMT
I don't know any of you, but I can speak from experience, what the last
poster, Ellen said is right.  We never really know our strength until it
comes down to it....

Mom was dignosed in Nov 2004 with liver cancer,  I had to go home to care
for Dad.  She didn't tell me prior to this that Dad had been diagnosed with
alzheimer's. I only found that out by accident.

To make a very very long, horrific chain of events shorter......Mom died in
Dec 2004, my brother, who is a bachelor with no children, and no job,  and
who thought that he had hooked a ride on the gravy train, moved back home
and cared for Dad for a couple of months....I went to visit....I was not
pleased at all with the environment that my father was living in, nor the
care my father was receiving.....so, I took him.  I packed Dad and hsis cat
up and flew them across the country to live with my family and I.  I don't
think that I even thought about what I was doing at the time...I called my
husband and told him I was bring Dad home with me....I just had to get him
out of there.  Sometimes you just gotta do what you gotta do...and I haven't
heard from my brother since.  Not a big loss...believe me.

It's now a year and a half later.  Dad lives here with my family and I and
he is doing just fine. The Dr. is delighted with his progress, says he has
the "Happy Alzheimers"...he's gained weight, is happy and content most of
the time, and it seems that because of changes in his medications and a
nutritionally balanced diet, which he was not getting while my brother was
caring for him,  the progression of the disease has slowed, not much, but
enough to notice.

I'm now in the process of looking for respite care and trying to get Dad
enrolled in an adult day program they have here for dementia patients.  It's
at the nursing home that he will eventually have to go into.

It hasn't been easy, but I don't regret it for a minute...I have found
strength and patience that I never knew I had. It's a hell of alot of work,
but at least I can go to sleep at night knowing that he is well cared for.

>> And it all comes down to me doing something.
>>
[quoted text clipped - 27 lines]
>
> It will all work out somehow, and you are in our thoughts.....
Tumbleweed - 18 Jul 2006 22:11 GMT
> It's now a year and a half later.  Dad lives here with my family and I and
> he is doing just fine. The Dr. is delighted with his progress, says he has
[quoted text clipped - 3 lines]
> caring for him,  the progression of the disease has slowed, not much, but
> enough to notice.

sounds like you have a supportive family (or at least partner), unlike kate.
That can make _all_ the difference. Also, if your dad didnt have 'happy' Az
it could be a whole different story. I think times come when people
sometimes have to take drastic action, such as dump other relatives in it so
they appreciate the gravity of the situation. There was a lady poster on
here a year or so ago who 'went on strike' from a 24x7 caring role in order
to bring her family to its senses.

Signature

Tumbleweed

email replies not necessary but to contact use;
tumbleweednews at hotmail dot com

Torpedo - 18 Jul 2006 23:30 GMT
Oh yes I do realize how fortunate I am that Dad has the "Happy Alz"...and
that I have a family that is supportive.  At the time though, it was a
decision I had to make on the spot, without even consulting my family.  I
probably shouldn't have done that, but I felt I had no choice.  Dad and I
were back on a plane within 6 hours of me arriving there...Someone had to do
something....and I did.

>> It's now a year and a half later.  Dad lives here with my family and I
>> and he is doing just fine. The Dr. is delighted with his progress, says
[quoted text clipped - 11 lines]
> poster on here a year or so ago who 'went on strike' from a 24x7 caring
> role in order to bring her family to its senses.
Lee - 21 Jul 2006 03:19 GMT
and it worked very well.....

may be worthwhile to note, however, that we did NOT end up placing her, and
in fact turned down a bed shortly before Christmas and have not put her back
on the list, even though we could have at any time - ignoring the ~advice~
of most people in this group

we got through the worst - and these days life is good for all of us.... my
MIL included.

it is possible that at some point, we might reconsider placement - but not
likely, to be honest

one size fits all solutions don't fit 'all' any more than one size fits all
tshirts do

>> It's now a year and a half later.  Dad lives here with my family and I
>> and he is doing just fine. The Dr. is delighted with his progress, says
[quoted text clipped - 11 lines]
> poster on here a year or so ago who 'went on strike' from a 24x7 caring
> role in order to bring her family to its senses.
Jan-ed - 18 Jul 2006 22:23 GMT
Oh, Kate, oh, Kate, oh Kate...........

I so very much know your story, know your struggles, know your pain and
frustration.

I flew east to see my Mom on September 11 2001----well, I went to the
airport and got on the plane---and then then got off the plane and they
closed the airport.  Due to schedules and finances I could not see my
Mom again until 2002.

Keep in mind that my sister lives near my Mom and was visiting her and
taking her to the doctor on a regular basis.  So I fly 3,000 miles to
see her in September 2002 and find a confused and disoriented person
who weighs about 80 lbs!!  Clearly she can no longer live on her own,
but somehow I've got to make it happen and get things rolling before I
return to the west coast.

Meanwhile Mom is resistant, angry, belligerent.  My sister clings to
the fantasy that Mom is doing fine (though she has been hauling her to
the ER on a regular basis).  We tour assisted living places, Mom is
difficult, Mom is unpleasant.  Mom does not want to move out of her
house.

One Saturday morning while my sister, her husband and family sleep Mom
and I are up early.  I make her some breakfast, pushing food at her.
We get to talking, she blows up, has a tantrum and goes to retrieve her
few possessions (we are at my sister's house) in a paper bag and begins
to march out the front door telling me that she is going to call the
police and tell them that her daughters are putting her away!!  (Now
remember that we are out here in the suburban landscape with house
after house after house and no police station at hand).  It was
traumatic at the time but now it seems almost ridiculous.

I have to wake up my sister and her husband to get Mom back in the
house.  It's 8 a.m. on a Saturday!  This is only one small story in the
whole scheme of things, just lots of battles where I had to be the "bad
guy" and do what was right for Mom even though she resisted and was
angry and my sister was in denial and did not want to deal with Mom's
anger.  Very very difficult, very upsetting, very hurtful.

I was afraid that Mom would not get moved to assisted care before she
either fell down the stairs in her house or disappeared on walkabout in
her undies.  Luckily she finally moved into assisted care and is now in
a locked Alzheimer's ward  (been there since late 2002).

There continue to be tough days and battles with my sister but at least
I know that Mom is safe and I did the right thing even though it was a
mess and my feelings were hurt pretty badly.

Good luck on the road ahead, it is definitely not an easy one, but
somehow you will find yourself taking the steps, each one at a time,
just live in that moment and don't try to plan for too much.  Deal with
each situation as it comes to you and find the strength and courage
just for that single task, let go of the rest.

We are all thinking of you here..........you have the love and support
of this community....let us know how things are going for
you.......Jan-ed
ncgen - 19 Jul 2006 16:00 GMT
Kate,
First off, you have our support.  You're not alone in this.  It sounds
like you desperately need at a minimum a much deserved break.  My heart
goes out to you because I well remember how it goes.  I don't know the
details ...does your mother live with you or still at home by herself?
Either way, to walk away even if notifying siblings could potentially
leave you open to charges of neglect if she becomes injured during your
absence.  I'm sure you'd never place her in jeopardy, but it sounds
like you can't count on the siblings esp if some are in denial, to help
even if you walk away for a short time.   Is your mom in denial too or
is she too advanced to realize she's losing her skills?  Are you the
one with her during the day now or is she alone?

If you live with her, I'd try to find someone to stay with her even if
a paid caregiver, so you can get away soon before this crashes in on
you even more.  Then you can regroup and take the time to plan. Then,
is there a service available like a day program, respite (center based
or homebased) or anything similar that you could get help from on an
ongoing basis?  I realize part of your problem is the siblings.  Is
there a good support group in your area?  If nothing else, you may find
support from those dealing with the same issues and who can offer
suggestions on ways to get your mother help.  Talk to a SW at a local
senior center or social services type agency about the resources
available.

In the beginning, my MIL denied she had a problem.  She was more than
happy to tell anyone FIL had AD though. She refused to go to a
respite/day program here in town.  She refused to leave the house at
all for a period of time which kept me right here unable to go
anywhere.  There were times, she'd get upset and more than once told me
she was leaving.  A few times she'd walk out the front door and start
down the drive or just sit on porch and rock for a long time if she
didn't hibernate to her room and curl up in a ball in her chair. With
me having 2 babies and FIL at home, I couldn't focus on her 100% and
she didn't like that.   Most of her reactions at that time were due to
the move and all the changes that brought though.
I remember sitting on my patio steps crying on the phone to my
grandmother that I couldn't do this anymore (take care of my in-laws).
I could but I just had to have a few minutes to myself and the venting
helped.  I was home all day with them and 2 kids, hubby out of town on
regular basis, we'd moved away from my friends, still getting battles
from FIL's family (sister) over us bringint them with us when we moved
here.  Not that his sister that complained had ever helped before we
moved.  Here we had my mom that would watch the kids and in-laws so I
could get out a couple hours a week while hubby was out of town
working.  Problem was....my mom and others here had not had to deal
with this type situation yet. They didn't  understand and thought I was
being selfish in saying I needed time away from the situation.  NOW
they understand because of dealing with it with my grandmothers.

At times, it gets overwhelming. It sounds like your toughest battle is
with the siblings and opening their eyes to her condition at this time,
finding resources for her that she'll accept AND making time for
yourself away from the situation.  You're dealing with the loss and
feeling alone while trying to cope with all the changes and finding her
help.  You have the support of those of us here that have been through
this already.  We know the challanges you face and the need for some
down time for you so you can regroup.

> Everyone acknowledges there is a problem.
> No one seems to have an implementable plan.
[quoted text clipped - 9 lines]
>
> kate
 
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