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

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On-again, off-again Hospice care

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Sarah Kanary - 14 Nov 2007 22:08 GMT
My mother's AD has progressed to the point where she is having difficulty
walking, talking, doing just about everything.  For a while, she was
refusing to eat, so was put on hospice care, but started eating again, so
was taken off hospice 3 months later.

Now she fell out of bed and bumped her head, plus got a nasty black eye and
was put back on hospice.   I thought "hospice" meant that death is going to
be soon.  So I brace myself.  This is it.  Then it's not.  I'm of course not
in any kind of hurry, but this is really an emotional rollercoaster.  How
can I make sense of this "death is near/no it's not" game?  Anybody here
been through this?

Sarah
Beth Cole - 14 Nov 2007 22:22 GMT
> How
> can I make sense of this "death is near/no it's not" game?  Anybody here
> been through this?

What you're going through sounds very familiar.  My mother-in-law has
outlived her hospice benefits. There is a four-year maximum term that a
given patient can receive benefits through Medicare Hospice programs in
the US.  She was in for the maximum amount of time and had to be
discharged.  We were originally told when she was accepted for hospice
care in the nursing home back in late 2002 to expect death within six
months.

Doris has now been in the nursing home for six years next week.  It's
awful.  It's a feeling of purgatory.

Beth

Signature

Don't go around saying the world owes you a living. The world owes you
nothing. It was here first. ~Mark Twain

sweetpickleNO@SPAMknology.net - 15 Nov 2007 04:01 GMT
When my husband was in the nursing home and put under hospice care, the
doctor didn't expect him to live over a month.  However he died eight months
later.
Gwen

> My mother's AD has progressed to the point where she is having difficulty
> walking, talking, doing just about everything.  For a while, she was
[quoted text clipped - 9 lines]
>
> Sarah
news.chi.sbcglobal.net - 15 Nov 2007 08:37 GMT
Read  my post following yours about nursing homes.   No matter that it
sounds strange, anti-depressants used in nursing homes *and elsewhere) can
confuse, harm others.   Consider this aspect.    Nothing good comes from
nursing homes that use anti-depressants.   Far as I know, they all do,
thanks to the pharmaceuticals.
Gail \

> My mother's AD has progressed to the point where she is having difficulty
> walking, talking, doing just about everything.  For a while, she was
[quoted text clipped - 9 lines]
>
> Sarah
OldRoads - 15 Nov 2007 12:25 GMT
On Nov 15, 3:37 am, "news.chi.sbcglobal.net"
<kureforcro...@sbcglobal.net> wrote:
> Read  my post following yours aboutnursinghomes.   No matter that it
> sounds strange, anti-depressants used innursinghomes*and elsewhere) can
> confuse, harm others.   Consider this aspect.    Nothing good comes fromnursinghomesthat use anti-depressants.   Far as I know, they all do,
> thanks to the pharmaceuticals.
> Gail \

It seems most Nursing Homes do use anti-depressants.
The amount and frequency of use is what makes the difference.

http://SearchNursingHomes.com
EddyJean - 17 Nov 2007 05:04 GMT
Read my post following yours about nursing homes.   No matter that it
sounds strange, anti-depressants used in nursing homes *and elsewhere)
can confuse, harm others.   Consider this aspect.   Nothing good
comes from nursing homes that use anti-depressants.   Far as I know,
they all do, thanks to the pharmaceuticals.
Gail \
=====================================

HI Gail:
A friend in the late 1980s was in a singing group that performed
thoughout the city and also sang at nursing homes.  The residents at
different nursing homes attending the performances were all asleep
because of drugs even before the group sang a note. My mother had
Alzheimers and was killed in a nursing home.  Anyone with a loved one in
a nursing home with memory loss, request those Deficiency/Correction
reports. The state, insurance, social security and nursing homes at
administrative levels sleep in the same bed.

EddyJean
news.chi.sbcglobal.net - 17 Nov 2007 17:10 GMT
EddyJean,
No question that what I say sounds strange.    But it is a fact.   Have seen
it over a long peiod of time.  Anti-depressants absolutely change the makeup
of a person, mentally and bodily,   They don't even have to be in each
others presence, Just the mind had to be focused or the person has to be
observed for all the changes to take place.   It is the only illness I know
that the mind plays the pivotal role.    All others have to be contracted
simply by exposure, as colds, pneumonia, etc. or they are formed bodily as
diabetes, etc. (In fact, crohns can cause diabetes, tremendous eye problems,
etc. etc. etc.    No one can be certain their loved one did not experience
these strange changes in health from other's use of anti-depressants.
And to top it all, the administrator I deal with has no concern for this.
She has stated she will never have the anti-depressants discontinued.   I
have noticed that they really do not care about the residents or workers
either, for that matter.    There is always another one waiting to come in.
And I thought she cared about my friend because she is  young, and came in
with good physical and even the mental health was much better.   And she
knew her from the neighborhood, so it should be personal.
I am not saying the physical care is not good.   It is, but the
anti-depressants throw the whole situation off by causing them horrible
symptoms that would never be there.    I see there is a nurse posting, I
will say to her, she may never have noticed what I say as most places are
large, and the help does not intermingle that much on a mental basis, so
they are not in danger.   But in the home I speak of has only 48 residents,
and the front desk faces some seating where the residents like to sit.   One
nurse was  getting ill, and he asked me what was wrong.   I knew one person
observing him all day was on an anti-depressant so I told him I was sure it
was her.    The following week he said the doctor DXd crohns disease for
him.   He was having a lot of difficulty walking.   Instead of speaking up,
he quit as many others have.    It is just   too bad that the situation is
so subtle as not to be seen clearly by everyone, (not even the resident
doctor).
The nurse is suing her (I heard from a friend he made in the home) for
several things including crohns disease.   I am sure he is getting nowhere,
and his friend left also.    I don't know what the solution is, what the big
gain is from anti-depressants that when they didn't have them years ago,
everyone got along well with sedatives, if needed.      No one needs to die
prematurely and suffer too, the desk workers have the option of leaving, as
many do,  Some are just detached enough not to be affected.
Well, I say this over and over, to no avail,
and my heart is broken every moment of the day and night.
Gail
EddyJean - 18 Nov 2007 21:58 GMT
Re: On-again, off-again Hospice care  

Group: alt.support.alzheimers Date: Sat, Nov 17, 2007, 5:10pm (PST+8)
From: kureforcrohns@sbcglobal.net (news.chi.sbcglobal.net)
EddyJean,
No question that what I say sounds strange.   But it is a fact.  
Have seen it over a long peiod of time. Anti-depressants absolutely
change the makeup of a person, mentally and bodily,   They don't even
have to be in each others presence, Just the mind had to be focused or
the person has to be observed for all the changes to take place.   It
is the only illness I know that the mind plays the pivotal role.   All
others have to be contracted simply by exposure, as colds, pneumonia,
etc. or they are formed bodily as diabetes, etc. (In fact, crohns can
cause diabetes, tremendous eye problems, etc. etc. etc.   No one can
be certain their loved one did not experience these strange changes in
health from other's use of anti-depressants. And to top it all, the
administrator I deal with has no concern for this. She has stated she
will never have the anti-depressants discontinued.   I have noticed
that they really do not care about the residents or workers either, for
that matter.   There is always another one waiting to come in. And I
thought she cared about my friend because she is young, and came in with
good physical and even the mental health was much better.   And she
knew her from the neighborhood, so it should be personal. I am not
saying the physical care is not good.   It is, but the
anti-depressants throw the whole situation off by causing them horrible
symptoms that would never be there.   I see there is a nurse posting,
I will say to her, she may never have noticed what I say as most places
are large, and the help does not intermingle that much on a mental
basis, so they are not in danger.   But in the home I speak of has
only 48 residents, and the front desk faces some seating where the
residents like to sit.   One nurse was getting ill, and he asked me
what was wrong.   I knew one person observing him all day was on an
anti-depressant so I told him I was sure it was her.   The following
week he said the doctor DXd crohns disease for him.   He was having a
lot of difficulty walking.   Instead of speaking up, he quit as many
others have.   It is just   too bad that the situation is so subtle
as not to be seen clearly by everyone, (not even the resident doctor).
The nurse is suing her (I heard from a friend he made in the home) for
several things including crohns disease.   I am sure he is getting
nowhere, and his friend left also.   I don't know what the solution
is, what the big gain is from anti-depressants that when they didn't
have them years ago, everyone got along well with sedatives, if needed.
    No one needs to die prematurely and suffer too, the desk workers
have the option of leaving, as many do, Some are just detached enough
not to be affected. Well, I say this over and over, to no avail, and my
heart is broken every moment of the day and night. Gail

======================================
Gail:
There are many things man doesn't understand and should be studied. As
the people's needs are ignored, government prefers to spend
billions/trillions on war and outerspace. Those cute little "Rovers",
constructed mostly from gold and seen on TV, may be traveling to the
Death Valley Desert instead of Mars for all we know. If that's the case,
who's pocketing the money?

Those with memory loss or speak a foreign language only, are especially
at risk in a nursing home. It's as bad today as it was 15-20 years ago.
Nothin's changed!  The question is: why is nothing done? Surely,
somewhere, there's a motive behind it, does it involve Social Security?
The more elderly that die, the less Social Security pays out.  Many pay
into Social Security all of their working lives but don't collect a
penny if dead before age 62.  Many illegals who come here to work, pay
taxes and Social Security before returning to their home country, who
gets their Social Security benefis? Does their benefits remain in the
fund or is someone pocketing this money? I'm not aware if Social
Security has been audited and the results published. If not, it sure
should be.

EddyJean
news.chi.sbcglobal.net - 18 Nov 2007 23:52 GMT
EddyJean,
I just wish I could find the answer to having the anti-depressants banned in
the nursing homes.   That is the biggest danger and the environment would be
safe without them for everyone.    The most frustrating thing I have
encountered.
There is no real reason for using them.  They have a psychologist who can
talk to them and assure them if necessary.   Talk therapy was always a
preferred treatment with a sedative if something was needed.
What changed is when the pharmaceuticals came out with the anti-depressants,
they found a gold mine and easy for the doctors to use for every imagined
thing and the more that use it, the more it is needed for others.    No
answer, the situation is abdominable.
Gail
Evelyn Ruut - 19 Nov 2007 12:52 GMT
> EddyJean,
> I just wish I could find the answer to having the anti-depressants banned
[quoted text clipped - 9 lines]
> for others.    No answer, the situation is abdominable.
> Gail

Talk therapy doesn't work for alzheimers patients.   They can't remember one
minute to the next, and even if they have talked out their fears, they don't
remember the answers, or the assurances.

Signature

Best Regards,

Evelyn

news.chi.sbcglobal.net - 19 Nov 2007 13:50 GMT
Evelyn.
True, talk therapy does not help much.  But what makes you think medication
does.    Perhaps it was anti-depressants used by someone in the first place
that put them at risk.   You cannot know what anti-depressants convey from
one person to another unless one experiences it.    It is an experience that
cannot be described, it is so subtle and life changing.
Gail

>> EddyJean,
>> I just wish I could find the answer to having the anti-depressants banned
[quoted text clipped - 13 lines]
> one minute to the next, and even if they have talked out their fears, they
> don't remember the answers, or the assurances.
sweetpickleNO@SPAMknology.net - 20 Nov 2007 01:40 GMT
I don't have AD (yet?) and I have been on and off anti-depressants for
years.  I have been taking Paxil for about 20 years, and if I don't, I cry
at the drop of a hat and can't seem to stop!  When I take it regularly I
very seldom cry.  That is not imagined.
Gwen

>> EddyJean,
>> I just wish I could find the answer to having the anti-depressants banned
[quoted text clipped - 13 lines]
> one minute to the next, and even if they have talked out their fears, they
> don't remember the answers, or the assurances.
Evelyn Ruut - 20 Nov 2007 03:28 GMT
> I don't have AD (yet?) and I have been on and off anti-depressants for
> years.  I have been taking Paxil for about 20 years, and if I don't, I cry
> at the drop of a hat and can't seem to stop!  When I take it regularly I
> very seldom cry.  That is not imagined.
> Gwen

Gwen it is brain chemistry.   If the meds help you to be happy, why not?
Anyone who would object must be addicted to misery and wants to see people
unhappy when they don't need to be.   Take em if you need em and don't
listen to the nonsense.

Signature

Best Regards,

Evelyn

>>> EddyJean,
>>> I just wish I could find the answer to having the anti-depressants
[quoted text clipped - 13 lines]
>> one minute to the next, and even if they have talked out their fears,
>> they don't remember the answers, or the assurances.
news.chi.sbcglobal.net - 21 Nov 2007 16:18 GMT
Anti-depressants are a very complicated issue.   They work very well with no
side effects for the user of the anti-depressant.
Let me make it clear.   It has a side effect that makes it deadly to another
person known by mind connection to the user of the anti-depressant, and not
in all cases, but enough in subtle ways that it is not recognized.   I do
wonderfully on anti-depressants, but because of what I have seen and done, I
have vowed NEVER to use an anti-depressant again and I suffer terribly for
it.  My big concern  are  the nursing homes that  do use anti-depressants,
and the people that do not use anti-depressants have no choice but to be in
that environment.   If  their family can choose if they want or should be on
an anti-depressant then  let   them   be   with others that are on
anti-depresssants.  The homes should be divided in two, those that do use
and those that don't use anti-depressants.   I maintain they are a license
to kill innocent people not on any anti-depressant.
What should be the objection to that?
Children with inflammatory bowel disease suffer terribly, and I have written
many times for the parents or whoever is close to the child to cease their
anti-depressants.  (or sometimes marijuana)
Most will listen and even  eventually   usually  those that do not believe
will listen.    This has no easy answer, but it is easy for those unaware of
the consequences of being in the environment of anti-depressants to become
illl with conditions that have nothing to do with their organically body
illnesses, and die prematurely.

I am not  trying to argue, I just feel people should be safe from
environments that harbor anti-depressants where they did not choose to be
in.
Gail Michael
The worst part of this illness   ( it produces  Crohns )   is   that   the
people involved do not have to be in the same room for the crohnie to
receive the harm, they can be miles and miles apart, still the damage
continues.    Only the MIND AND STIMULANT are at work.
I will agree it is weird and barely perceptible, but that is the strange
cause of crohns, and they can research a hundred years, and never find the
cause, because it is so strange. (And they are spending billions on
research)   All I can say is good luck to the researchers   Their
treatments are good, but that is not attacking the cause.

> I don't have AD (yet?) and I have been on and off anti-depressants for
> years.  I have been taking Paxil for about 20 years, and if I don't, I cry
[quoted text clipped - 19 lines]
>> one minute to the next, and even if they have talked out their fears,
>> they don't remember the answers, or the assurances.
deerwoodflower@hotmail.com - 27 Nov 2007 04:08 GMT
On Nov 21, 10:18 am, "news.chi.sbcglobal.net"
<kureforcro...@sbcglobal.net> wrote:
> Anti-depressants are a very complicated issue.   They work very well with no
> side effects for the user of the anti-depressant.
[quoted text clipped - 66 lines]
>
> >> Evelyn

This is by far without a doubt the stupidist thing i have ever heard
of in  my 57 yrs.I have taken an anti-depressant for years and could
not live without it.I cry ,get angry,etc.My mom started taking one
when she started wanting to kill herself.It has helped
tremendously.Even you say the affects are barely noticeable.How is it
you have noticed them? although i am sure there are some side affects
maybe i would much rather be happy than crying or hearing my mom say
she wants to kill herself.And to say one can get krohns from someone
who is on them is insane.My sister has krohns so maybe i gave it to
her .LOL,Barb
news.chi.sbcglobal.net - 29 Nov 2007 01:34 GMT
Difficult situation, depends on which side of the fence you are.    The one
taking anti-depressants or the friend or relative not taking an
anti-depressant.  I know the good they do, and have very beneficial effects
and I also know the horrid effects to the person related in mind who gets
the side effects (yes, crohns disease, whether you can accept it or not)
Crohns is the only illness I know that is transmitted by the mind (along
with a stimulant) so I talk about no other.  I am happy for you and your
mother, but sorry for your sister.   Is her illness intense or just an
inconvenience.   I have lost much of my hearing and some eyesight to crohns.
So I am on the other side of the fence.   And my friend in the nursing home
is not the only one that suffers.   The ones that socialize are in danger
and suffer also.
No one can know what crohns feels like unless one experiences it.   Again I
say, they should divide the nursing homes into those that use
anti-depressants and those that do not.   That way, everyone can take their
chances in the home they want to be in.   Strange, weird, is this whole
matter, and I am not telling anyone not to take them.   But knowing what I
know, I would not take anti-depressants.    Stress is a big part of crohns
once it develops, so your sister should try to avoid stress where possible.
And I don't like to give advice.    But Valium is a big help for stress, but
getting it from the doctor is like asking for the moon.   There is that much
unknown about anti-depressants, that they kill without  one realizing what
the death ACTUALLY occured from.
The doctor only know what he sees, and what he sees is not the real
underlying cause.   It is not a pretty picture.   Your mother would have had
to be counselled years ago before there were anti-depressants.
Gail

> This is by far without a doubt the stupidist thing i have ever heard
> of in  my 57 yrs.I have taken an anti-depressant for years and could
[quoted text clipped - 6 lines]
> who is on them is insane.My sister has krohns so maybe i gave it to
> her .LOL,Barb
deerwoodflower@hotmail.com - 29 Nov 2007 04:03 GMT
On Nov 28, 7:34 pm, "news.chi.sbcglobal.net"
<kureforcro...@sbcglobal.net> wrote:
> Difficult situation, depends on which side of the fence you are.    The one
> taking anti-depressants or the friend or relative not taking an
[quoted text clipped - 34 lines]
> > who is on them is insane.My sister has krohns so maybe i gave it to
> > her .LOL,Barb
Gail,
  My sisters krohns is more an awful inconvienience.Diarreah all the
time.Barb
news.chi.sbcglobal.net - 29 Nov 2007 11:37 GMT
Barb,
there
is over the counter herb Valerian which is for sleep, but does reduce
stress.  Effects last only a couple of hours, but better than nothing.
If ever there is a day you and your mother do not take anti-depressants, try
to notice if your sister is feeling better.  I will not tell you to present
such a day but  I am almost certain your sister would have a day off from
crohns.    Good luck to all.
Gail
I put up with this in my family.   I cannot convince my sister her constant
urinary infections are due to her son in law's Paxil.   She suffers and I
suffer with her.
It does sound incredulous, but I know it to be true.
Gail
> On Nov 28, 7:34 pm, "news.chi.sbcglobal.net"
> <kureforcro...@sbcglobal.net> wrote:
[quoted text clipped - 52 lines]
>   My sisters krohns is more an awful inconvienience.Diarreah all the
> time.Barb
EddyJean - 20 Nov 2007 06:13 GMT
Gail,
I wholeheartedly agree with your assessment on anti-depressants.  The
word "Nursing Home" is a misnomer. Residents on low-salt diets fed
barbecue beef, pork & beans and potato chips!!!

EddyJean
news.chi.sbcglobal.net - 26 Nov 2007 15:03 GMT
Thinking of demonstrating against anti-depressants.  Have several signs made
up, shirts, balloons, etc. but no car.  Live north side Chicago, IL Opinions
on the idea and if anyone can join.    and its cold outside.   Very
important , see the use of anti-depressants permeating everywhere, and I
know the danger from one person to another.   They harm by simply the mind
going from one person to another if they form any connection
Gail
Gail
> Gail,
> I wholeheartedly agree with your assessment on anti-depressants.  The
> word "Nursing Home" is a misnomer. Residents on low-salt diets fed
> barbecue beef, pork & beans and potato chips!!!
>
> EddyJean
Mary_Gordon@tvo.org - 15 Nov 2007 11:57 GMT
Sarah, my MIL died of end stage AD. It was very slow. However, she had
lost intelligible speech, and her ability to walk about two years
before the end. She spent her days propped in a wheelchair or in bed,
essentially dozing. Her eyes were blank, she reacted to her
environment very little. Totally helpless, spoon fed etc. When she
went into the final spiral, she started eating and drinking less and
less. She'd push your hand away, spit things out, refuse to open up,
despite careful coaxing. It took about 6 weeks in total. She got
weaker and weaker, took in less and less. Just brutal. It was just
awful because it was so incremental.

We prayed for something to carry her off - she was just so darned
healthy in every way other than the AD, there were no chronic
illnesses when she got to the point where they might have helped her
mercifully along.

Most people don't actually die from the AD - they die from their other
chronic illnesses or even acute illnesses like infections, that the AD
has make difficult or impossible to manage or treat (or the family
elects palliative care and lets those other illnesses follow their
natural course). They get pneumonia, their heart condition or lung
problems get worse from being bedridden, some cancer advances, their
diabetes causes complications, whatever - and those factors end up
being the ones that actually tip the egg that is balanced on end. The
actual end of life from AD itself in an otherwise healthy person can
be very, very slow - and worse, very unpredictable.

Remember back in the 1970's when Francisco Franco of Spain was dying,
and it seemed like it would never end (the press kept reporting death
was imminent and he lived on - and the process became the butt of
jokes on news parody shows like Saturday Night Live i.e. Its Saturday,
and Franco is STILL dying. You can't find humour in the misery of
their end, but it becomes a kind of black absurdity.
I mean, what do you say to family and friends who ask over months and
months - yes, things are terrible and getting worse. I
told you she was dying four months ago, and yes, she's still
dying...just in microscopic increments.

Its just not like any other disease, is it.

M.
Bev - 16 Nov 2007 01:11 GMT
> My mother's AD has progressed to the point where she is having difficulty
> walking, talking, doing just about everything.  For a while, she was
[quoted text clipped - 9 lines]
>
> Sarah

I am a home health and hospice nurse, who has lurked here for several
years, and have learned so much from all of you. I have used the
information you all share in my practice, and sometimes send family
members to this group for support.   I did want to say that for
someone to be placed on Hospice,  their doctor must state that "this
illness, if it follows it's usual and expected course, will be
terminal within six months".  The key words are "usual and expected".
I have had patients on Hospice for 1 1/2 to 3 years.  I understand
the roller coaster ride this must be for families, and wish I had
something to offer that would be of comfort to you.  Unfortunately,
Alzheimer's has periods where is waxes and wanes.  It is, in my
opinion, one of the cruelest of diseases.
I wish you peace.
Bev
 
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