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Medical Forum / Diseases and Disorders / Alzheimer's / April 2007

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hello am  I in the right place?

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J J - 07 Apr 2007 15:02 GMT
I am a caregiver for my mother who has dementia and alzheimers
not sure any more but I am going crazy trying to help her .
please let me know if this is the place to vent and get advice.
thanks JJ
Mary_Gordon@tvo.org - 07 Apr 2007 16:06 GMT
Yup, you've come to the inner sanctum of the club no one wants to
join! The participants have all been caregivers for people with
dementia, family members, or have dementia causing illnesses
themselves. We've got experience with every kind of care option going,
many of us have been through the experience from start to end (our
loved ones have passed on), and we've dealt with every imaginable
behaviour, and difficulty.

Ask away. What's the current challenge? You'll get lots of ideas and
suggestions. Keep your mind open, not every idea is going to suit your
situation, but they are all worth listening to. Sometimes people here
will tell you things that you may not be ready to hear, but its all
worth talking about.

Mary
J J - 07 Apr 2007 17:01 GMT
oh thanks goodness!!! I probably will drive everyone crazy asking so
many questions. I have no idea what stage mom is in her alzheimers~she
is 92
but she has short term memory
repeats things over and over
thinks her relatives like mom and brother ect are still alive
has some difficult in dressing
she does try to sponge herself off but I really have to bathe her.
she is paranoid about locking up the doors at night and seems to be more
awake at night so I have to give her a mild sleeping pill.
she rearranges drawers or have obsessions with washing out her plastic
waste baskets.
she knows me and some of her grandchildren but not the ones that do not
come to visit her.
gets agitated if I have caregivers come but then is nice to them
hates day care complains everytime I try to take her there
is acting more of a recluse and wants to just stay at her own home.
she has given me anxieties attacks and my own health is going down now I
have to get on anti-depressants to cope with her which is helping me.
sorry for such a long post
JJ
John Inzer - 07 Apr 2007 17:54 GMT
>> oh thanks goodness!!! I probably will drive everyone crazy asking so
>> many questions. I have no idea what stage mom is in her
[quoted text clipped - 17 lines]
>> helping me. sorry for such a long post
>> JJ
===========================
Everything you say is familiar to me.
Caring for an AD victim is a hard thankless
task but you can get through it...just think of
the days when your mom took care of you.

Just a couple of suggestions...your
mom should have constant supervision
because you never know what an AD
victim might attempt to do. My MIL would
try to cut electrical cords in half with scissors
because she thought they were snakes.
And never argue with her or try to explain
things to her because she will not understand.
Trying to reason with my MIL would only
result in an argument that had no possible
conclusion.

My MIL (my wife's mother) is gone now but
I still remember how she took care of us for
many years. She loved flowers and growing
things. She loved to cook and she loved her
family...in the end she no longer recognized
us but we knew who she was.

Signature

John Inzer

Evelyn Ruut - 07 Apr 2007 18:22 GMT
>>> oh thanks goodness!!! I probably will drive everyone crazy asking so
>>> many questions. I have no idea what stage mom is in her
[quoted text clipped - 41 lines]
> family...in the end she no longer recognized
> us but we knew who she was.

John what a lovely post!

I remember well when Rosie was still alive, and so was my MIL Ida.   It does
help to try and remember the good times and what and who the person was when
they were in good health.

JJ, you are in the right place.   Welcome to the club nobody wants to join,
but all are grateful to have found!

We all have been down that road and John's and Mary Gordon's comments are
all worth taking to heart.   I hope we can all help you keep your sanity
through this journey.   This group helped me keep mine.

Signature

Best Regards,

Evelyn

John Inzer - 07 Apr 2007 19:23 GMT
>>>> oh thanks goodness!!! I probably will drive everyone crazy asking
>>>> so many questions. I have no idea what stage mom is in her
[quoted text clipped - 58 lines]
> are all worth taking to heart.   I hope we can all help you keep your
> sanity through this journey.   This group helped me keep mine.
=====================================
Hey Evelyn...

Yes, they are gone now but definitely not forgotten.
There's hardly a day that goes by when we do not
reminisce about Rosie.

John
Bud - 07 Apr 2007 18:01 GMT
> I probably will drive everyone crazy asking so many questions.

Heh, probably not. We've BTDT. It sounds like your Mom is in an early
stage yet but it will progress and you'll need all the help you can get.
If you haven't alrerady done so, try to get you Mom to sign a :

a) Durable Power of Attorney (with medical care decisions)
b) updated wills
c) a Living Will

Start looking for permanent assisted living quarters for later transfer
and seek one that has extended and Hospice care for the eventual time
when you won't be able to cope.
Many Psychiatrists are prone to recommend the anti-dementia drugs like
Namenda (memantine) and Aricept (donepezil) not be given as they only
prolong or ameliorate the progress but few of us can bring ourselves to
take the fast road and let our loved ones die more quickly, inevitable
thought it be. They may be helpful in meds to control her agitation and
help sleep however. These are just a few thoughts that come to mind as I
lost my wife just before Christmas after many years of fighting the disease.
Good luck, stay strong and post anything you thing you need help with
here. As Mary said, many of us have dealt with this horrible thing.

Bud
Alan Meyer - 08 Apr 2007 00:06 GMT
... < much excellent advice elided > ...

> Many Psychiatrists are prone to recommend the anti-dementia drugs like Namenda
> (memantine) and Aricept (donepezil) not be given as they only prolong or ameliorate the
> progress ...

Is that true?  It's very hard to believe that the anti-dementia
drugs will prolong life in any way whatsoever.  They don't
even slow the progress of the disease.  It is my
understanding that all they do is ameliorate symptoms.

Denying them to a patient seems to me makes no more
sense than denying pain killers to a cancer patient because
it will only make him suffer longer.  It won't!

If anyone knows of any evidence to the contrary, I'd like
to know about it.

   Alan
Strobe - 08 Apr 2007 01:09 GMT
>... < much excellent advice elided > ...
>
[quoted text clipped - 13 lines]
>If anyone knows of any evidence to the contrary, I'd like
>to know about it.

I second that.
Seroquel, Paxil etc didn't make my wife live any longer,
they just made what life she had less unbearable.

That's a *good* thing.
J J - 08 Apr 2007 01:25 GMT
Yes that is what I was wondering also.
mom has been on aircept for about two years ---her doc said it won't
make her any better but woud keep her from getting worse. I seem to at
least have some peace of mind knowing she is not or has been so bad as I
have seen some at day care.
Tumbleweed - 08 Apr 2007 02:00 GMT
> Yes that is what I was wondering also.
> mom has been on aircept for about two years ---her doc said it won't
> make her any better but woud keep her from getting worse. I seem to at
> least have some peace of mind knowing she is not or has been so bad as I
> have seen some at day care.

It will keep her from  getting worse for a while, may even be a slight
improvement.
Then it will slow the rate of deterioration for a while longer.
Then it will stop working.

> I seem to at
> least have some peace of mind knowing she is not or has been so bad as I
> have seen some at day care.

Sorry to say, she will eventually go that way,and worse, which is why people
are saying get things fixed or arranged now.

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Tumbleweed

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tumbleweednews at hotmail dot com

Alan Meyer - 08 Apr 2007 20:44 GMT
> Yes that is what I was wondering also.
> mom has been on aircept for about two years ---her doc said it won't
> make her any better but woud keep her from getting worse. I seem to at
> least have some peace of mind knowing she is not or has been so bad as I
> have seen some at day care.

As I understand it, what her doctor said applies to the symptoms,
not the disease.  Aricept doesn't slow the deterioration of the
brain.  What it does is, for some patients, improve some brain
functions so that the patient is able to operate at a higher level.

An analogy might be something like crutches for a person with
a broken leg.  The crutches don't heal the leg, but the allow
the person to get around better using his arms instead.

As I understand it, Aricept doesn't revive dying or dead
brain cells, it allows the remaining brain cells to function
more effectively in the damaged environment.

   Alan

[What it actually does is reduce the level of an enzyme that
breaks down acetylcholine, a molecule that carries signals
from one brain cell to another.  By leaving more of those
molecules around, weak signals from one cell are more
likely to be received and recognized by another cell.  This
would have deleterious effects in a healthy brain, causing
overstimulation.  But in some Alzheimer's brains,
overstimulation is helpful, bringing the patient a little
closer to a normal brain response.]
sweetpickleNO@SPAMknology.net - 08 Apr 2007 01:44 GMT
My husband was helped greatly by Aricept, and I would certainly use it again
should I have that choice to make.
Gwen

> ... < much excellent advice elided > ...
>
[quoted text clipped - 15 lines]
>
>    Alan
Alan Meyer - 08 Apr 2007 00:10 GMT
> ... hates day care complains everytime I try to take her there

My mother hated to go to day care.  Then one day a very
smart day care worker told her that she really hoped she
would come because so many of the people here have
such terrible problems and my Mom was such a big help
to them.

She then introduced my Mom to a woman who was worse
off then my Mom was and asked her if she could talk to the
lady and make her feel better.

It worked, at least for a while.

   Alan
janet tyner - 07 Apr 2007 18:26 GMT
My mother is living with me since august 2006 when she was so afraid of
some blonde haired woman coming to get her in a white car she was really
shaking,so I brought her to my house. when i got her home i realized
that she had not been eating right, if at all she had not bathed in I
don't know how long she needed constant supervision she would see people
and things that were not there.
  she is doing beter now but her disease is progressing faster. her dr.
has her on paxil and namenda and ambien cr to sleep since she actually
gets a good nights rest her mood is better. she only recognizes my
children because they are here to see her alot she thinks i am her
mother and she is a little girl. She likes daycare she goes once a week
and they paint her nails and she plays bingo and other games she is 81
years old
   she is incontinate and has to be dressed and given a shower she can
no longer even put on her own shoes. I feel for you because this is not
easy and it is heart breaking to have your mother right here but not be
able to enjoy each other like we used to now it's all on a different
level one of my friends told me recently that I had aged ten years
but that comes with the territory  i'm just grateful to be able to do
this for as long as I'm able
sorry to ramble on.

janet tyner
Tumbleweed - 07 Apr 2007 20:38 GMT
>I am a caregiver for my mother who has dementia and alzheimers
> not sure any more but I am going crazy trying to help her .
> please let me know if this is the place to vent and get advice.
> thanks JJ

JJ, one of many bits of advice you'll get, remember that now is as good as
it will get, it will get worse,and there will some a time that, alone as you
seem to be, that you cant cope any more.
No one can.
Plan for that time, recognise it will happen, recognise there is no shame or
problem in that, its physically impossible to look after an Az patient 24x7.

Seems you already are using day care, ignore your mother if she doesnt like
it, its as much for her health as yours that she needs to go there because
if you dont get the rest you wont be able to look after her.

Also, as others ahve said, dont get too worried about asking your mother
what she would and woukdnt like, if you imagine she is , say, 2 years old,
that is an appropriate measure to determine if you should consult her on
something or not. becausr otherwise, no doubt, she'll already imagine there
is nothing wrong with her , she can cope perfectly well, she doesn't need
day care (she certainly wont recognise that *you* need her to go to day
care, etc etc.

My father went into full time care when he eventually point blank, refused
to go to day care, because at that point my mother couldnt cope any more
without her time alone.

Feel free to come back and vent.

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