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Medical Forum / Diseases and Disorders / Alzheimer's / January 2005

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Depression among the families of Alzheimer patients

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Tana - 29 Nov 2004 06:04 GMT
I am looking for personal information, if comfortable, about the
families struggles with this life alterting disease. The effects it
has on those left behind, and those who are living around it today.
Tumbleweed - 29 Nov 2004 08:05 GMT
>I am looking for personal information, if comfortable, about the
> families struggles with this life alterting disease. The effects it
> has on those left behind, and those who are living around it today.

Just out of interest why did you copy your message to another group with no
relevance to Az?  (talk.abortion)
I ask because trolls sometimes use this tactic to try and flood other groups

Signature

Tumbleweed

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

Sarah Kanary - 02 Jan 2005 02:30 GMT
I am dealing with BOTH my parents who are Alzheimer's patients.....yet their
insurance says that they have no medical necessity for either visiting
nurses or nursing home care.....it's perfectly "healthy" for my also
diabetic father whose legs are numb from neuropathy and can hardly walk or
see, to try to keep my advanced AD mother from wandering out of the house,
hiding their hearing aids & glasses, money, ATM cards.....walking in to the
neighbors' house without knocking and telling them that this strange man is
in her house trying to get her to take pills.....she can walk for miles,
about the only physical thing she still remembers how to do....but Dad can
walk only a few steps so must just sit and watch her leave because he can't
see well enough to manage locks....and all my sister and I can do is stop in
regularly to take care of laundry, baths, doctor visits, prescriptions,
banking, shopping, etc. and come running when the emergency calls come, then
hope for the best.  We try, but neither of us can be in two places at once.

Only after their health has deteriorated sufficiently will their insurance
pay for SOME nursing services.  IF there is a "medical necessity"......but
if the "only" problem is that they are a danger to themselves and others,
they can be confined to a hospital/nursing home for only 72 hours....as if
that's going to 'cure' them.

So all we've got to help them with is as much of our time as we can spare
from our own families, lots of worry and hoping for the best.  Dad
absolutely refuses to put Mom in a nursing home even on a temp basis for
'respite' care, which is all he/we can afford anyway.

About a year ago, my own memory problems had progressed to the point that
others started to notice......I was starting to forget to make bank
deposits, something I had NEVER done in over 20 years.....forgetting how to
cook after doing so for 20+ years.....doing things like driving several
miles on a flat, SHREDDED front tire and never noticing......these things
are NOT me!

So the diagnosis is: Major Depression.  As an added bonus, I also have
something called "temporal lobe epilepsy" also known as psychomotor
epilepsy.

Yet, after all this, I look at what I've just typed and think "Ugh!  That
all may be true, but I've never considered myself as 'depressed'"!  After
all, I know concentration camp survivors that aren't this messed up.  It's
not what you get, but what you DO with what you get that makes the
difference.

I can only describe watching both your parents disintegrate before your eyes
as this:  Imaging being fed through a chipper/shredder very,
very...slowly....my mother used to say that the last step in growing up is
burying your parents....so what is this?

I feel much better now.  If anything I said can possibly benefit anyone,
it's worth the telling.

Sarah Kanary

>I am looking for personal information, if comfortable, about the
> families struggles with this life alterting disease. The effects it
> has on those left behind, and those who are living around it today.
Evelyn Ruut - 02 Jan 2005 04:29 GMT
dear sarah,

first, pardon my one finger typing, but i am nursing an injury at this time.

i sympathize deeply with your plight.  you and your parents really do need
help.   you should contact the alzheimers association in your area and try
to see if they can help your family out with your mom.   if there is an
adult daycare center near you it could give your family at least some relief
while you work out the rest of the details.

in my area the health dept does what is known as a PRI screen which
determines competency.   after that you can try to get the person placed in
a safe place such as a nursing home with an alzheimer wing, but be aware
that if that person has assets, those assets are subject to being liquidated
to pay for their care.

it might make extremely good sense for you to have a consultation with a
lawyer who is a specialist in elder law before you do anything else.   i
cannot stress just how important this is, enough.   you also need a good
evaluation by your family doctor to determine your mom's condition.  even if
it seems obvious to all, this is important if you are going to get some help
for her.   proper diagnostics and good legal advice are absolutely
necessary.   make lists and make a plan, even if you yourself are having
difficulties.   you need to get this stuff in place and fast.

i must say that time is only going to make matters worse, so waiting to act
won't help.   i hope you can get a family meeting together, make some
definitive plans regarding your mom's safety and her future.   good luck to
you and yours.
Signature

Regards,
Evelyn

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

>I am dealing with BOTH my parents who are Alzheimer's patients.....yet
>their insurance says that they have no medical necessity for either
[quoted text clipped - 53 lines]
>> families struggles with this life alterting disease. The effects it
>> has on those left behind, and those who are living around it today.
Sarah Kanary - 02 Jan 2005 16:55 GMT
Thank you for your concern.  :-)

Unfortunately, we have looked into the 'competency' issue, and it's not that
simple.  Mom and Dad gave their POAs to each other years ago.  Mom is
clearly incompetent, BUT Dad's AD is not progressing nearly as fast, so he
is still legally able to use his POA on Mom's behalf.  So all decisions
about Mom are in Dad's control.  Their lawyer confirms this.

And Dad absolutely refuses to hear of Mom being put into a nursing home.  It
is useless to press the issue, because Dad can't afford it anyway,  Mom is
only 74, her diabetes and hypertension are controlled with meds, she is
physically fit for her age, so she could be in a nursing home for quite a
while, yet with no "medical necessity" insurance will not pay, even if they
liquidate all their assets.

So they could exhaust all their assets within a few months, then Mom would
STILL get discharged because of no ability to pay.  Then they would be worse
off than they are now.

We've contacted the local Alzheimer's foundation, and the local Area Agency
on Aging.  They visited my parents to make an assessment, and my Dad calmly
told them that he can take care of Mom for now, and since he has POA there's
not a thing us kids can do.

My brother is a nursing home administrator in another state, but is licensed
in this state as well, and confirms these grim realites.  He can't (or
won't) help with their care personally, but he IS much better off
financially than me or my sister, and will pay for visiting nurses to
supplement our visits to them.  But even he cannot afford nursing home care
for one of them, let alone both.

One benefit from all this is that it has helped me get other things in
perspective, and see what's REALLY important.

Sarah

> dear sarah,
>
[quoted text clipped - 83 lines]
>>> families struggles with this life alterting disease. The effects it
>>> has on those left behind, and those who are living around it today.
Evelyn Ruut - 02 Jan 2005 18:03 GMT
dear sarah,

a sad situation.   the saddest part is that all too often families don't
make definitive moves till some disaster ensues..... like maybe their loved
one getting lost or setting the kitchen on fire or overdosing on
prescription meds they forgot they already took that day.   i am grateful
every day that we got my mother in law here with us before any real disaster
came to happen.

good luck and take care of yourself.

Signature

Regards,
Evelyn

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

> Thank you for your concern.  :-)
>
[quoted text clipped - 119 lines]
>>>> families struggles with this life alterting disease. The effects it
>>>> has on those left behind, and those who are living around it today.
Dennis P. Harris - 02 Jan 2005 20:49 GMT
> So they could exhaust all their assets within a few months, then Mom would
> STILL get discharged because of no ability to pay.  Then they would be worse
> off than they are now.

She would NOT be discharged!  Once assets have been spent down
Medicaid would pay for her care.  The rules on spend-down vary
from state to state, and many states have homestead exemptions
that prevent taking their home as long as a spouse is living in
it.  In most states, the state would file a claim against the
estate after the surviving spouse dies.

You can't be certain that they would be worse off than they are
now without talking to an attorney experienced with your state's
laws regarding Medicaid and other assistance programs.  Don't
assume the worst, GET THE FACTS even if you have to do without
your impaired father's help.

From your description, things will not be able to continue as
they are for very long before there is a crisis, since he is
obviously not able to provide the care she really needs.  You
need to prepare NOW for that eventuality by checking out
facilities NOW before you need them.

You also need to steel yourself for the unpleasantness that could
result if you have to have your father declared incompetent so
that you or a sibling can exercise the POA and get your mother
the care he is not able to provide.  Remember that he is NOT
rational.  If he has a dementia his reasoning is impaired.
Evelyn Ruut - 02 Jan 2005 21:48 GMT
sarah i just wanted to add that dennis is exactly correct in what he says
below.   you have to apply for medicaid and they won't put her out while
they wait for it to come through.    i just went through all of that in the
past year.
Signature

Regards,
Evelyn

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

>
>> So they could exhaust all their assets within a few months, then Mom
[quoted text clipped - 27 lines]
> the care he is not able to provide.  Remember that he is NOT
> rational.  If he has a dementia his reasoning is impaired.
Sarah Kanary - 03 Jan 2005 01:32 GMT
>> So they could exhaust all their assets within a few months, then Mom
>> would
[quoted text clipped - 4 lines]
> She would NOT be discharged!  Once assets have been spent down
> Medicaid would pay for her care.

If there is no 'medical necessity' Medicaid won't pay either.  We've already
checked.

>The rules on spend-down vary
> from state to state, and many states have homestead exemptions
> that prevent taking their home as long as a spouse is living in
> it.  In most states, the state would file a claim against the
> estate after the surviving spouse dies.

If Mom went into a nursing home, Dad would lose her income, and he cannot
afford to continue living in their house on just his income alone.  So their
house would have to be 'liquidated' to pay for her, and eventually, his
nursing home bill.  I don't care if all their assets must be liquidated, I
just want them safe.  However, I suspect (hopefully I'm wrong) that others
are more reluctant to relinquish their inheritance at this point.

> You can't be certain that they would be worse off than they are
> now without talking to an attorney experienced with your state's
> laws regarding Medicaid and other assistance programs.  Don't
> assume the worst, GET THE FACTS even if you have to do without
> your impaired father's help.

We have gotten the unfortunate facts from both a lawyer and our brother, a
nursing home administrator licensed in our state.

> From your description, things will not be able to continue as
> they are for very long before there is a crisis, since he is
> obviously not able to provide the care she really needs.  You
> need to prepare NOW for that eventuality by checking out
> facilities NOW before you need them.

Yes, we've checked out nursing homes in our area, visiting them, speaking to
their directors, and they all say the same thing:  Cash on the barrelhead
since there's no 'medical necessity'.  Neither private insurance, nor
Medicare, nor Medicaid will pay if it's not considered medically necessary.

> You also need to steel yourself for the unpleasantness that could
> result if you have to have your father declared incompetent so
> that you or a sibling can exercise the POA and get your mother
> the care he is not able to provide.  Remember that he is NOT
> rational.  If he has a dementia his reasoning is impaired.

Unfortunately, secondary POA went to my sister 3 years ago, shortly after my
Dad was diagnosed with AD.  At that time, I still had both their secondary
POAs.  However, Mom overheard the doctor explaining to me privately that he
could revoke Dad's driver's license on the spot or have the State retest
him.  But all she heard was me saying "Oh please, have the state retest him"
and decided that I was trying to get Dad's license revoked.  Mom then talked
Dad into taking POA away from me and giving it to my sister, who still
insists that Dad doesn't even have AD since his MRI was normal a year ago.
Sis has officially declared Dad "undiagnosed" from AD.  She thinks Dad's
cognitive abilities are just fine, thank you.  I have spoken to his doctor
and he is amazed at my sister's myopia.  Btw, my Dad is STILL driving, but
that I am taking into my own hands.  People's lives are at stake, so whether
he or my sister like it or not, I'm contacting the State tomorrow.  Or the
doc who diagnosed him with AD.  Or his eye doc, who says his vision is too
poor for driving.  I'll be the bad guy but that's just tough.  I don't know
what my sister is waiting for, a tragedy?

Dad wanted to see the ocean 'one more time' so my sister and I, along with
our families took Dad and Mom to the ocean for a week.  Somehow I ended up
flying down and back with them, plus they stayed in my apartment the whole
week.  My sister stayed next door and helped out with them, but was not
present to see Dad asking me 3 times a day which bedroom was his, holding
out a handful of pills for himself and Mom twice a day and asking me "Are
all these different?" or alternately collapsing in tears or yelling his head
off when Mom hid the soap in her stocking, kept trying to walk out the door,
or dug through the garbage and stuffed it in her pockets.

Thanks to all for the input.  I'm still not giving up on researching the
options.  I don't know if my sister is better adjusted to all this, or just
delusional, but I can't wait around to find out.

Sarah
Evelyn Ruut - 03 Jan 2005 01:43 GMT
sarah,

if it is as bad as you say, your sister will not be able to remain in denial
much longer.   we went through that with a few of my mother in law's
friends.   ultimately it got worse and there was no more room for denial.
sadly, it is what it is.....

good luck.
Signature

Regards,
Evelyn

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

>>
>>> So they could exhaust all their assets within a few months, then Mom
[quoted text clipped - 83 lines]
>
> Sarah
Dennis P. Harris - 03 Jan 2005 06:58 GMT
> If there is no 'medical necessity' Medicaid won't pay either.  We've already
> checked.

then talk to her doctor, and make sure that he finds a medical
necessity.  seems to me that fact that you father also has AD
would make it such!

maybe your parents also need to change docs?

and as for the sister in denial, have the doc that was amazed at
her myopia talk to her.  he certainly can, since she has a
medical POA.

fyi, i'm actually grateful that my sister has to do all the
executor stuff now, since mom was so pissed when she lost her
license that she changed her will so that i wouln't be the
executor.  she wouldn't let me have the medical POA because she
knew that i would tell the doc if she wasn't taking her meds.
turkey in the straw - 03 Jan 2005 13:16 GMT
I haven't posted much lately but read every post.
  Thought i would update a bit.We moved in Oct.My mom seems to be
taking the move pretty well.Was thinking yesterday though of her decline
since she has been with us.2 years in July.She used to do dishes,dress
herself,make her bed,etc.Now she does none of the above.       BUT,I am
finally getting pd.We are near the closing of her property.That crap
takes forever.The city is holding it up.
     I have a question.My mom takes a pill for sleep.Not very
often.It's an anahystamine.(SP)Sometimes it doesn't work till the next
day and she's sleeping all day then instead of that night.Has anyone
experienced this?She takes it at bed time.Theres times she will sleep
all day and even the next night,but not the night i gave it to her.
     Thank You,Barb




Tumbleweed - 03 Jan 2005 16:09 GMT
>I haven't posted much lately but read every post.
>   Thought i would update a bit.We moved in Oct.My mom seems to be
[quoted text clipped - 5 lines]
>      I have a question.My mom takes a pill for sleep.Not very
> often.It's an anahystamine.(SP)

antihistamine?

>Sometimes it doesn't work till the next day <snip>

I would say that means it isn't working, and you need to try a different one
:-)

Signature

Tumbleweed

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

Evelyn Ruut - 03 Jan 2005 17:55 GMT
hi barb, i assume she is taking a benadryl.   ida took that for a while too.
we switched to a tylenol pm because we heard it was possibly beneficial.
we never has the odd delayed effect you describe, but ida did sleep a lot in
the day probably just the progression of the illness.

Signature

Regards,
Evelyn

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

>I haven't posted much lately but read every post.
>   Thought i would update a bit.We moved in Oct.My mom seems to be
[quoted text clipped - 9 lines]
> all day and even the next night,but not the night i gave it to her.
>      Thank You,Barb
Rose - 24 Jan 2005 01:50 GMT
S Kanary wrote:

>Yet, after all this, I look at what I've just typed and think "Ugh!  That
>all may be true, but I've never considered myself as 'depressed'"!  After
>all, I know concentration camp survivors that aren't this messed up.

Major depression is a biological illness.  It's not a personality flaw or a
result of poor emotional coping skills.  Stress is a major cause of depression,
but it's also a major cause of some "physical" illnesses such as Crone's
Disease and migraine headaches.  

If you doubt your doctor's diagnosis you could get a second opinion.  If the
other doctor confirms the diagnosis I hope you will believe them and follow
their treatment recommendations.  Major depression is a condition that needs to
be taken seriously and treated with great care.  It can have multiple
causes...physical, emotional, genetic, etc...and often requires multiple
treatments such as medication, talk therapy, meditation, exercise, diet changes
and lifestyle adjustments.

Grief is a normal reaction to having Alzheimers in the family, and depression
is quite common among caregivers.  Please take good care of yourself.

___
"The sea was angry that day my friends. Like an old man sending back soup at a
deli." -- Seinfeld
 
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