Conference turris::womannotes-v3

    Marilyn,
    
    My mother had Alzheimer's, and I was her care provider.  It is a
    bizarre and ugly disease that causes frustration, anger, and pity
    in the care provider, the care give, and the patient.
    It not only victimizes the person afflicted but also victimizes
    all those around them.  The hardest thing to believe is that your
    mother really *is* acting this way--that she really *is* acting
    like she's totally lost it.  The fact is that she really *is* losing
    it and it seems to accelerate as it gets worse.  She cannot help
    herself.  She really doesn't have control and that probably scares
    her a lot.                
                              
    In the stage she currently is, she is simply forgetting and mixing
    up things.  After while, she will begin fighting about everything
    and acting like a naughty child, then she'll do a total reversal
    and be sweet and docile for a brief time.  She may show signs of rather
    bizarre behavior such as walking into a room of people without clothes
    on, or even exhibiting rather overt sexual conduct.  There will
    come a time when she can no longer dress herself properly, clean
    herself properly, go to the bathroom without help, etc.  From a
    personal perspective, Marilyn, your mother actually will appear
    to be going backwards in her development and regressing to infancy. In
    essence, I believe this is what happens.  Her brain is shutting
    down piece by piece.  When it gets to the point that her body shuts
    down the vital functions in it's regression, she will die.  By that
    time, she will be in diapers, not know anybody, have to be strapped
    into a chair so she doesn't fall out, and it will take about two
    people to feed her--one to hold up her head, and one to put the
    pulverized food into her mouth.  She will not be able to chew, to
    drink, to hold eating utensils, etc.  She will be, for all intents
    and purposes, a neonatal exhibiting the characteristics of a newborn
    and still regressing.     
                              
    It is painful to even think of things like this, but it is reality.
    The longest an Alzheimer's patient lasts is, I understand, about
    eight years maximum.  Some people deteriorate slower and some faster.
    If you are lucky, it will be fast.  My mother and I weren't so lucky.
    She lasted about five years or more.
                              
    If I may be of any support during this painful time in your life,
    please write or call me at DTN: 544-3179.
                              
    My thoughts are with you, 
                              
    Barb                      
                              
                              

Marilyn,

 Have you been able to get your mom a *real* good medical
going over ... some people are diagnosed with Alzheimer's
when it's really a circulation problem ... there are
specialists in this area. anyway, if you've just been
to one doctor, a specialist may have something. (Of course,
I say this ... probably back-wishing. My mother-in-law
had a long long decline into Az's and a battalion of
medical tests turned up nothing else.

 You have my sympathy and good wishes.  This is about
as tough as it gets.

 >    And my brother does nothing.  
    
What does he say ... or is he pretending everything is
just fine and mom is still not a day over 50.  Meigs

    Thanks Barb and Meig, for your comments.  I am aware of the decline,
    both physical and mental, of the Alzheimer's victim.  I have read books
    and attended support groups and talked to other people with aging
    parents.  I have educated myself for the past two years since my Mom
    was diagnosed at the Memory Disorder Unit at Mass. General Hospital.  I
    believe their diagnosis is correct.  But it is still so painful to know
    that she forgets all birthdays, the names of her great-grandchildren,
    and usually forgets to buy Christmas gifts, cards, etc., which she
    always did in the past.  If I try to help, she says everything is taken
    care of!  
    
    I am too soft, and this is very painful.
    
    My brother admits and agrees to the diagnosis, but offers no
    help..moral, financial, supportive, nothing.  But his behavior
    goes further back than the Alzheimer's diagnosis.  He also lives in
    Atlanta, and my mom and I live in the Boston area.
    
    I wish there was a support group where both my mom and I could go
    together to develop better communication during this terrible time. 
    Are there holistic approaches that we haven't even tapped?
    
    Marilyn

    Marilyn,
    
    Surely in the Boston area there is an alzheimer's support group?  They
    may be accessed through the local senior services organizations there. 
    These are the same people running meals on wheels in Colorado Springs. 
    I know that here they have an alzheimers's group that includes adult
    day care, and eventual residential care here.  Although I don't know
    who sponsor's this here.
    
    Meg

    Marilyn,
    
    I can't believe you're too soft.  If I'm ever in a similar position, I
    only hope I have your strength...and compassion.
    
    Nancy

    see also:
    
    LBDUCK::CARING_FOR_ELDERS
    57 - help with alzheimers
    65 - specialist for alzheimers
    66 - alzheimers support group
    
    -Jody
    

>   My brother  ... offers no help... financial, supportive, nothing.  

Marilyn,

Maybe it is time to ask.  Perhaps hit him up now for twenty
or forty a week. At least something. This will help now,
and it might be a useful habit to encourage so that if care 
expenses go way up, he will have committed himself to some
degree.  Meigs

	I saw this in Fridays' paper:

Tracey

********************************************************************************

	Two discoveries raise hopes for therapies for Alzheimer's


	The twin discoveries of a protein that appears to cause the brain cell 
destruction found in Alzheime's disease and of a natural brain hormone that 
blocks the ability of the protein to kill cell may lead to therapies to halt and
reverse the disease, according to a team of Harvard researchers.

	The report, which appears in the current issue of the journal Science, 
was ahiled as a major devevlopment by Dr. Creighton Phelps, medical director of
the Chicago-based Alzheimer's Disease Association, which funded the research 
alng with the National Institutes of Health.

	"This is very exciting because it opens up all kinds of possibilites,"
Phelps said.  "If this proves to be true, we got the potential for a treatment."

	There is now no effective therapy for Alzheimer's, which affects an 
estimated 4 million Americans.  Alzheimer's is a progressive neurodegenerative
disease marked by the gradual loss of memory, reasoning, orientation and 
judgement.  

	Although the report is encouraging, Phelps cautioned that the experi-
ments were conducted on brain cells grown in culture and that the findings need
to be verified.

    There are support groups in the Boston area, but they are for the
    family alone, NOT the victim.  The victim is usually unaware that
    anything is wrong, or if they do admit anything to themselves, they 
    cover it up by story-telling (not really lying).  At least this is my 
    limited experience.    
    
    My mother is taken care of financially, but the emotional burden
    is the hardest for me.  This disease is turning my mother into a person
    I don't want to know or be with.  And yet she needs me now more than
    ever.  What a conflict!
      
    Marilyn      

    My heart goes out to you.  I jotted down a number of an Alzheimer's
    Support Group for a friend and still have it in a pile on my desk.
    1-617-491-0546.  Hope it helps.

    RE: .9
    
    Marilyn, I know how you feel and I sympathize. My mother died of
    Lou Gehrig's disease 11 months ago, and she was exactly as you
    describe. It's the worst experience I ever had, I think. I hope
    you have people to talk to. That helped me. Feel free to send mail 
    if you want to.
    
    Eileen