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Medical Forum / Diseases and Disorders / Alzheimer's / May 2004

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The medication

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Evelyn Ruut - 25 Apr 2004 01:44 GMT
About the medication and the nursing home wanting to adjust it....

I think that in many cases families who are turning their relative in for
nursing home care may be doing this in the more difficult stages that happen
earlier on.   There may be a tendency to overmedicate such persons for
control issues.   I think THAT is why the nursing home doctor wants to
"establish a baseline" with a new patient.

In Ida's case all that is really not an issue anymore, since we backed off
her meds some time ago discovering we could get by with less.   Early in the
game (a couple of years ago)  she was threatening suicide, having awful
delusions and anxiety all the time and the meds were needed to keep her
comfortable and less stressed out.

As her illness progressed there was less of all of that, and it is
unnecessary to put up with side effects of medications, not to mention the
expense, when the upfront effects are not so needed anymore.

So I think a meeting with the doctor is in order.

One of the things I did notice with this nursing home is the fact that the
patients were more active and alert appearing, whereas in the other nursing
home we looked at, the entire alzheimers ward was full of people in
recliners looking like they were pretty much out of it.   This could have
been due to late stages or it could have been due to medication.

I think I need to consult with their doctor beforehand to discuss his plans.
Darryl is right about backing off slowly if at all, and I intend to speak to
them about that.

Signature

Regards,
Evelyn

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

Susan Kohn - 25 Apr 2004 03:14 GMT
Since you are in NYS I may be able to shed a little light on the reason for
withdrawing medications.

Anyone who is in a NH and is on any psychotrophic medications must be
removed from them for a trial period to see if the symptomology can be
relieved by other means - behavior modification, distraction, etc.  I think
that this came about because many facilities in years past would medicate
people so they wouldn't be a problem and then could lower staffing ratios.
Now, it is part of patient's rights to be in a "least restrictive
environment" and the only way to prove that the medication is needed is to
document the behavior without the medication.

HTH,
Susan
> About the medication and the nursing home wanting to adjust it....
>
[quoted text clipped - 25 lines]
> Darryl is right about backing off slowly if at all, and I intend to speak to
> them about that.
Dennis P. Harris - 25 Apr 2004 03:30 GMT
> Now, it is part of patient's rights to be in a "least restrictive
> environment" and the only way to prove that the medication is needed is to
> document the behavior without the medication.

OTOH, it doesn't make much sense to reduce dosages of drugs like
aricept or namenda.
Susan Kohn - 25 Apr 2004 03:41 GMT
I - and anyone who works in a NH - will tell you that the whole theory
doesn't make sense, but the state has set a standard and that's what they
expect to see documented.  It is also your right in this state to fall out
of your wheelchair and hurt yourself because the state has decided that it
violates your rights to physically restrain you - some restraints can be
used, but they have to be loosened every 20 minutes.

It's how the "powers that be" have set it up - those of us who work in the
field don't have a lot to say about it!

Susan

> > Now, it is part of patient's rights to be in a "least restrictive
> > environment" and the only way to prove that the medication is needed is to
> > document the behavior without the medication.
>
> OTOH, it doesn't make much sense to reduce dosages of drugs like
> aricept or namenda.
Susan Kohn - 25 Apr 2004 03:50 GMT
Sorry to reply to my own post but...as an addendum:  I'm not sure that
namenda and aricept are psychotropic meds - I'll have to find that out - if
they're not, that would mean that they would not have to be stopped.
Respirdol is a psychotropic and that's why they would stop that.

Susan
> I - and anyone who works in a NH - will tell you that the whole theory
> doesn't make sense, but the state has set a standard and that's what they
[quoted text clipped - 15 lines]
> > OTOH, it doesn't make much sense to reduce dosages of drugs like
> > aricept or namenda.
Dennis P. Harris - 25 Apr 2004 04:36 GMT
> Respirdol is a psychotropic and that's why they would stop that.

I fail to understand how it helps an AD patient to stop drugs
that prevent delusions and agitation that do NOT improve the
quality of their lives.

Of course, the law makes it damn near impossible for those of us
with relatives who have mental illnesses to 1) get them admitted
to a hospital when to any rational oberver it appears that they
are a danger to themselves and 2) for relatives to get
information about a relative's (even a spouse's!) diagnosis,
treatment, or medications from their doctor (granted, much of
*that* problem is poor understanding of the HIPAA law by doctors
and medical staff).
Hillary Israeli - 27 Apr 2004 13:08 GMT
*On Sun, 25 Apr 2004 02:50:48 GMT in alt.support.alzheimers,
*"Susan Kohn" <xstitcher46@verizon.net> wrote:
*
*> Respirdol is a psychotropic and that's why they would stop that.
*>
*I fail to understand how it helps an AD patient to stop drugs
*that prevent delusions and agitation that do NOT improve the
*quality of their lives.

Apparently the point of the medication withdrawal is not to help AD
patients, but to help those unfortunate few people (whether AD patients or
otherwise) who are being overmedicated prior to placement, and to prevent
the use of medication to make patients more tractable.

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    hillary israeli vmd  http://www.hillary.net  info@hillary.net
               "uber vaccae in quattuor partes divisum est."
                not-so-newly minted veterinarian-at-large :)

Susan Kohn - 27 Apr 2004 23:21 GMT
Thank you Hillary - I was trying to explain that but didn't seem to be
making headway - that is the reason the state requires the stop/start,
stop/start.  It doesn't make sense to anyone who works with the elderly and
their medications but the rule is there to keep an eye on those who would
abuse them and the system.

Susan

> *On Sun, 25 Apr 2004 02:50:48 GMT in alt.support.alzheimers,
> *"Susan Kohn" <xstitcher46@verizon.net> wrote:
[quoted text clipped - 9 lines]
> otherwise) who are being overmedicated prior to placement, and to prevent
> the use of medication to make patients more tractable.
Dennis P. Harris - 28 Apr 2004 03:07 GMT
On Tue, 27 Apr 2004 12:08:19 +0000 (UTC) in
alt.support.alzheimers, hillary@hillary.net (Hillary Israeli)
wrote:

> and to prevent
> the use of medication to make patients more tractable.

please tell me the difference between reducing delusions and
"making patients more tractable".  of course if you do reduce
delusions they will be more tractable.
Evelyn Ruut - 28 Apr 2004 12:32 GMT
> On Tue, 27 Apr 2004 12:08:19 +0000 (UTC) in
> alt.support.alzheimers, hillary@hillary.net (Hillary Israeli)
[quoted text clipped - 6 lines]
> "making patients more tractable".  of course if you do reduce
> delusions they will be more tractable.

Dennis that is pretty much what I said.   In this particular nursing home
they have a VERY strong emphasis on rehabilitation in the rest of the
facility, so they seem to take somewhat the same approach with the alzheimer
ward.   They really are serious about this and they have plenty of employees
all working towards assessing the person's abilities to function and working
with them.

They also feel that various medications, which we all know very well have a
tendency to make a person more tractable, also diminish their walking
abilities etc.  So that is why they tend to feel that the less amount of
meds the better.   I am OK with that, if they want to deal with her
delusions.   I don't want her to fall or hurt herself either.

They told me that Ida barely ate anything yesterday, so the big show of
eating that nice healthy meal when we brought her in on Monday was just out
of her nervousness or something.   I sort of knew that at the time.  I would
cook her the most delicious things at home and she would eat only a part of
it.   The dogs could get fat on her leftovers!

Anyway, I suggested that she eats more with coaxing, so they are going to
coax more.   They weigh all the patients every week, so they will know if
she isn't doing well with her food.  They did mention that she was taking in
a lot of fluids which was good.   I always had a hard time getting her to
drink anything.   She would say she wasn't thirsty.

At any rate they are going to titrate her down, though I don't know how much
or how or when.  Hopefully I can get to see the doctor today when we come in
for our visit.   I am pretty much impressed with this facility right now,
and we will see how it goes as time goes on.

Yesterday we paid for her prepaid funeral which we are allowed to do with
medicaid and the home prefers it also.   It felt so strange arranging a
funeral for a living person, but it is actually a pretty good deal.

It goes into a trust which earns interest.   That justifies the increase in
costs over time in case the person dies a lot later on.    You can take this
and use it anywhere, so it is portable.  I think after talking to the guy
who owns the place (a fellow Rotary Club member) that it sounds like a good
deal for anyone, actually.

The only thing is that you have to make all your estimates of what you are
going to do ahead of time, since you can't ask for more than you have paid
for down the road when you actually go to use it.   So they don't limit
whether you want a fancy funeral or a plain one, but you can't change the
deal later on unless you also add more money.

Signature

Regards,
Evelyn

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

Tumbleweed - 28 Apr 2004 16:06 GMT
<snip>

> Anyway, I suggested that she eats more with coaxing, so they are going to
> coax more.   They weigh all the patients every week, so they will know if
> she isn't doing well with her food.  They did mention that she was taking in
> a lot of fluids which was good.   I always had a hard time getting her to
> drink anything.   She would say she wasn't thirsty.

You could tell them about the fact she will seemingly eat toast and eggs OK,
maybe they can try that.

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Tumbleweed

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Evelyn Ruut - 28 Apr 2004 19:02 GMT
> <snip>
> >
[quoted text clipped - 7 lines]
> You could tell them about the fact she will seemingly eat toast and eggs OK,
> maybe they can try that.

Hi Tumbleweed,

Actually I did tell them.  The dietitian interviewed us at length and asked
a million questions about her likes and dislikes.   One thing we knew for
sure, was that she didn't like Italian food (tomatoey kinds of foods).
While we were discussing all of this, Ida proceeded to devour meatballs and
the bread it came in, soaked with sauce!!!   You just never know.  One time
she will eat something, and another time not.   Time will tell how she does.
Today we are going to visit and see how things appear.

Signature

Regards,
Evelyn

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

Tumbleweed - 29 Apr 2004 07:15 GMT
<snip>

> Actually I did tell them.  The dietitian interviewed us at length and asked
> a million questions about her likes and dislikes.   One thing we knew for
> sure, was that she didn't like Italian food (tomatoey kinds of foods).
> While we were discussing all of this, Ida proceeded to devour meatballs and
> the bread it came in, soaked with sauce!!!

LOL

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Tumbleweed

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Mare - 26 Apr 2004 05:34 GMT
Hi Susan,
I know that NH's are regulated to death because of the bad ones
but I have to say one that makes sense to me is the "restraints
are illegal" one. I've seen late stage AD people try to climb
over bed railings and break limbs before I could reach them, when
visiting my Mom. If I hadn't been there god knows how long it
would have been before they found her. It was dinner time and she
was in her room alone and if she had tried to put her head thru
it, I shutter thinking about it.  Same goes for a determined AD
person trying to get out of a wheel chair. Scary.
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mfcoleman@THEOLEmindspring.com
http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm
alt.support.alzheimers' FAQs and Stuff Pages

> I - and anyone who works in a NH - will tell you that the whole theory
> doesn't make sense, but the state has set a standard and that's what they
[quoted text clipped - 7 lines]
>
> Susan
Susan Kohn - 26 Apr 2004 07:59 GMT
Mare:  It is scary to think that people who can't think right for themselves
are allowed to put themselves in danger of falling/injury but those are the
rules that the state has imposed.  As I said, restraints can be used but
only sparingly.  I always say that people have the civil right to fall out
of their wheelchairs and hurt themselves (I don't know how to make a sarcasm
face - but that's what I mean).  I wonder if somewhere along the line the
rules will change as the NH population is more and more dementia patients.
I guess we who live in NYS will see.  I don't know how it is in other
states.

Susan
> Hi Susan,
> I know that NH's are regulated to death because of the bad ones
[quoted text clipped - 23 lines]
> >
> > Susan
jeanette - 02 May 2004 14:03 GMT
hi
Just to say that here in England restraints are not allowed, cot sides may
be used following a thourough risk assessment, which would have to indicate
that you are not making the risk worse. There is some reasearch to show that
restraints cause more injuries, certainly in my experience the more you try
to inhibit a confused person the harder they will fight against it.
Just a different view ..
jeanette
Evelyn Ruut - 02 May 2004 15:00 GMT
In the nursing home Ida is in, they are allowed to put ONE side of the bed
up, but the other must remain down.  Even when it is down, there is a very
slight elevation from the bed surface, which I imagine may prevent them from
rolling out of bed in their sleep.  I didn't see anyone restrained.

Signature

Regards,
Evelyn

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

> hi
> Just to say that here in England restraints are not allowed, cot sides may
[quoted text clipped - 4 lines]
> Just a different view ..
> jeanette
Evelyn Ruut - 02 May 2004 18:27 GMT
Just a quick note:  Ida fell this morning trying to toilet herself.  She
managed to get out of her merry walker somehow, and down she went.   (They
really need to "granny proof" those release catches on those things).   Once
she knows how to get out of it she will be doing it all the time.   (Like a
little kid would).

Today she was asking to go home.  We told her "when the doctor says it is
OK".... her reply was "when is the doctor coming?"  Amazing that sometimes
her mind does work OK especially in figuring out how to get home or how to
get out of the merry walker.

Signature

Regards,
Evelyn

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

> In the nursing home Ida is in, they are allowed to put ONE side of the bed
> up, but the other must remain down.  Even when it is down, there is a very
[quoted text clipped - 12 lines]
> > Just a different view ..
> > jeanette
JM Van_Horn - 26 Apr 2004 05:08 GMT
I guess that's why my mother's NH in California cut back Mom's
Zyprexa and then eased the dose back up.  The past 2 months
have been difficult.  Mom seems better now that she's back on
the dose she came into the NH on.  She tends to yell for attention
anyway, but it was awful when she was yelling about delusions.

It's been an adjustment for me as well as Mom.  She had been
in a dementia unit in assisted living and I was responsible for
dealing with her doctor and taking her to appointments.  Now
that she broke both hips while sundowning and can't walk anymore
she is in a NH and they take charge of her in a way the assisted
living facility couldn't.  I do have an appointment with her new
doctor this week and the place seems nice.

Joan

> Since you are in NYS I may be able to shed a little light on the reason for
> withdrawing medications.
[quoted text clipped - 7 lines]
> environment" and the only way to prove that the medication is needed is to
> document the behavior without the medication.
 
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