Why not treat agitation with drugs?

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Noam - 19 Apr 2005 09:11 GMT

Hi,

I'm new to this group and I have a question concerning the treatment of
AD related agitation with drugs. Browsing around this group's postings
I've got the impression that this is a major no-no. My question is why
is it so?

My mother was diagnosed with AD almost 6 years ago, and she's is
suffering from agitation and anxiety for about two years now. She was
hospitalized 6 month ago and the staff at the nursing home are
recommending not to use drugs to calm her down, though when she was at
home we treated her with Respirdal with success, at least for a while.

I understand that psychiatric drugs are not good for the patient's
general health, but my mother does not recognize anymore any of her
loved ones, she can't talk or communicate in any way, and she has no
relief from this terrible mental agony for a second.

I can't understand why they keep her suffering this way, when there are
drugs which can calm her down or make her numb. They don't let cancer
patients suffer that way and give then any amount of morphine needed to
ease their pain, but for some reason this mental suffering seems OK.
Can anyone tell me why?

Thanks in advance for your help

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Tumbleweed - 19 Apr 2005 09:19 GMT

> Hi,
>
[quoted text clipped - 21 lines]
>
> Thanks in advance for your help

I dont think you have browsed enough, or maybe just hit a few random
thoughts that didnt agree, plenty here have at times posted in general
agreement with your comments.

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Tumbleweed

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

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Evelyn Ruut - 19 Apr 2005 11:54 GMT

> Hi,
>
[quoted text clipped - 21 lines]
>
> Thanks in advance for your help

Hi and welcome,

I can tell you part of the reason they are somewhat reluctant to use these
drugs in nursing homes. It is because the drugs also seem to have side
effects, some of which impair the balance, and the patient is more inclined
to fall.

I am totally with you on this. I can see no reason to let a person
experience mental suffering from delusions and extreme agitation when there
are medications that help.

My mother in law benefited tremendously from Risperdol when she was at home,
but we had already tapered her dosage down to 1 pill per day as her illness
got worse over time, because her delusions also had diminished somewhat by
then.

When she was admitted to the nursing home they stopped the risperdol,
because she was so unsteady on her feet. By that time it didn't change
anything, in fact she was soon put in a wheel chair full time because she
was unable to walk without falling even without any drugs.

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Best Regards,
Evelyn

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JM Van_Horn - 20 Apr 2005 01:54 GMT

> > I'm new to this group and I have a question concerning the treatment of
> > AD related agitation with drugs. Browsing around this group's postings
> > I've got the impression that this is a major no-no. My question is why
> > is it so?

No, wrong impression.

> > My mother was diagnosed with AD almost 6 years ago, and she's is
> > suffering from agitation and anxiety for about two years now. She was
[quoted text clipped - 12 lines]
> > ease their pain, but for some reason this mental suffering seems OK.
> > Can anyone tell me why?

I can only tell you the same thing happened to my mother. The first thing
they did when she hit the nursing home from the hospital is cut back on
her anti-psychotic meds. Turned out there is a law in California or
something
where you have to taper down the meds at least once a year so they can
prove they are not over-medicating the patient. Ok, so after the trauma
and suffering of bringing her down to where she was yelling in agitation
and suffering great anxiety, they got ahold of her doctor and he goosed
it up again. All was fine - I thought - until her doctor left practice,
she got another doctor and the same process started all freakin' over
again. Finally I get ahold of the new doctor who reveals that the
pharmacy had passed along to him the "new guidelines" for Zyprexa
and Mom was on the edge of it. So, to cover his butt, here we went
again, having to experiment with other drugs. Xanax joined the
affray on a white charger and it was really very helpful, so I guess it
worked out ok in the long run. I was extremely pissed about the
whole thing.

The bottom line is that an on-site doctor is better for these "experiments"
but I guess they must be in the upper-crust institutions. Everyplace I knew
about had doctors "on call" or the patient's own doctor who came by
once a month, unless there was a crisis. The staff would call the doctor
and (they would complain) sometimes the doctor or the doctor's staff
would just blow them off. It all means extra days of anguish for the
patient.

Joan

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Evelyn Ruut - 20 Apr 2005 02:00 GMT

>> > I'm new to this group and I have a question concerning the treatment of
>> > AD related agitation with drugs. Browsing around this group's postings
[quoted text clipped - 49 lines]
>
> Joan

The nursing home my mother in law is in is among those who have a full time
doctor always on site, and I noticed they recently added another doctor.
They also dropped the anti-psychotics when she first went in, but
fortunately she was already on a greatly reduced dose before we even applied
for her to go there.

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Best Regards,
Evelyn

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Lee - 20 Apr 2005 04:03 GMT

no major no-no in my books... my MIL is on zyprexa...don't think we could
manage her at home without it... we tried others before this; respiridol
(sp?) was particularily UNsuccessful for her - led to her getting up in the
middle of the night, putting her coat on, and trying to leave, and so
on...... this works..... although the ~bedtime games~ are horrid even WITH
it, some nights... (like tonight for example - I'm out of
patience...fortunately hubby came home and has taken over)

I'm about ready to consider 'drugs to treat agitation' for me, never mind
HER, at this point LOL

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Noam - 20 Apr 2005 12:53 GMT

Hi Guys,

Many thanks for your replies. seems it all comes down to negotiating
with the doctors. As Evelyn and Joan said, i'm afraid my mother's
doctors too have other considerations like obscure laws and fear of
liabilities, and they want to cover their butts. just a few weeks ago
the FDA issued a warning on some anti-psychotic drugs among them
Zyprexa.

As to finding the right remedy, its a process of trial and error and it
takes an expert to do it faster and with less pain to the patient. I
don't know the standard in the states, but here in Israel nursing homes
usually have what we call a "general doctor" who specializes in
geriatrics. For finding the right drug i think you better have a
psycho-geriatric doctor, and i think we'll hire one to check my mother
and decide what to give her.

Many thanks again for your help and concern

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Evelyn Ruut - 20 Apr 2005 13:06 GMT

> Hi Guys,
>
[quoted text clipped - 14 lines]
>
> Many thanks again for your help and concern

Noam,

One more thought.... when my mother in law was admitted to the nursing home
they told me of their intention to stop all drugs and re-establish a
baseline, upon which they would then again add the needed drugs to the
levels they felt she needed. I told them to go right ahead, but they
would soon be sorry if they did that.

My feeling was that if they wanted to deal with suicide threats and tears
and tantrums and delusions they should be my guest, but while she was in our
home, we wanted her to be happy and comfortable in her own skin. They
looked at each other (this was a group meeting) and agreed not to cut out
ALL her meds. But I did give them permission to do whatever they felt was
best.

I have to tell you that whatever they ultimately decided regarding the
medications has been working just fine. I have never seen her in any of
those extreme states while in the nursing home, and she has been there a
year now. There has been a lot that went on since then, and she has been
fine, emotionally speaking.

You may want to consider letting the nursing home just do their thing.
After all, they are professionals there, and they will not want to be
dealing with tantrums and out of control delusions any more than you would.

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Best Regards,
Evelyn

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Noam - 20 Apr 2005 13:24 GMT

Hi Evelyn,

I'm afraid my mother is way beyond tantrums and delusions. she is very
quiet and very frightened. she keeps on walking around with no
intermission. i don't think she can perceive or respond anymore to any
behavioral treatment.

best

Noam

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Evelyn Ruut - 20 Apr 2005 14:36 GMT

> Hi Evelyn,
>
[quoted text clipped - 6 lines]
>
> Noam

Hi Noam,

Then it may also be a possibility that she is beyond the realm of behavior
affecting drugs? You won't know till you let them try it.

In my mother in law's case there was a definite increase in the need for
drugs for a time, then there was a definite decrease as the illness took
more and more of a toll.

Essentially I am saying that what we observed was over time, the loss of
more and more of her cognitive abilities also resulted in less and less of a
need for psychoactive medications. It was as though a certain amount of
brain power was needed to generate delusions and stressful reactions. As
that diminished, we found that the side effects of the drugs were then
becoming more of a liability than a help.

Our doctor gave us a prescription that was for 1 to 3 tablets per day, as we
determined the need. We started with one per day, and soon increased it to
two within a few weeks. At a certain point we tried three, but realized it
was too much as she became too lethargic and more confused. We stayed at
two for a long time, then backed off to one a day, and then further still to
a half a one, prior to her admission to the nursing home.

Also, this whole scenario took place over a couple of years. The nature of
the illness is that it does progress, and with it the need for medications.
The one exception to that would be the drugs such as Aricept, which actually
replace a missing chemical in the brain which allows them to use what little
cognitive abilities are left.

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Best Regards,
Evelyn

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Evelyn Ruut - 20 Apr 2005 12:54 GMT

> no major no-no in my books... my MIL is on zyprexa...don't think we could
> manage her at home without it... we tried others before this; respiridol
[quoted text clipped - 8 lines]
> I'm about ready to consider 'drugs to treat agitation' for me, never mind
> HER, at this point LOL

We had some success including one tylenol PM after dinner with her other
meds when we had problems like that. At any rate, I do know how you
feel. It was exhausting and depressing more for us than for her.

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Best Regards,
Evelyn

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Lee - 20 Apr 2005 16:14 GMT

I'm guessing her doctor would frown on that, given the extent of her heart
problems ....will mention it to him though.

I just get so tired of having her in my SPACE all the time. She goes out
tonight though, so will have a couple of ma-free hours LOL I'm looking
forward to having a bath ALL BY MYSELF

> > no major no-no in my books... my MIL is on zyprexa...don't think we could
> > manage her at home without it... we tried others before this; respiridol
[quoted text clipped - 12 lines]
> meds when we had problems like that. At any rate, I do know how you
> feel. It was exhausting and depressing more for us than for her.

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Evelyn Ruut - 20 Apr 2005 16:53 GMT

> I'm guessing her doctor would frown on that, given the extent of her heart
> problems ....will mention it to him though.
>
> I just get so tired of having her in my SPACE all the time. She goes out
> tonight though, so will have a couple of ma-free hours LOL I'm looking
> forward to having a bath ALL BY MYSELF

Yes, you should mention it, cause it was our doctor who suggested it. It is
just tylenol with a bit of benadryl in it, so it isn't a drug like a
tranquilizer would be.

I sympathize. We had the local daycare center to give us some relief and
had a neighbor who granny-sat for us too. Nothing, but nothing in the
world could convey to you the relief we felt when we finally placed her,
even though it was hard to come to that point, it was such a relief to know
that someone else was on duty 24/7.

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Best Regards,
Evelyn

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>> > no major no-no in my books... my MIL is on zyprexa...don't think we
> could
[quoted text clipped - 15 lines]
>> meds when we had problems like that. At any rate, I do know how you
>> feel. It was exhausting and depressing more for us than for her.

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Lee - 20 Apr 2005 19:21 GMT

I have home care at least for a few hours most days... covers me off so that
I can go work for a bit, since I'm not getting much done when I'm here with
her... way too many distractions - she's become very very demanding lately.
It's getting to the point that it's just not enough.

We've started the process re: placement - but it seems to have become
stalled... on our end, not any place else... all sorts of procrastination
re: booking actual appointments. 3 of her kids involved (my partner and 2
of his sisters)

suspect it won't happen until ~someone~ (meaning me) completely loses it

:( As long as they have me to actually DO the caregiving, it's not a

priority for any of them.

Sucks being the primary caregiver but having none of the power re: making
decisions - especially since 1 of the people that DOES have a say is no
longer speaking to me *sigh*

Having several weeks off from my main job is not necessarily a good thing...
doesn't FEEL like a break at all when it means I spend that much more time
at home with ma.

> > I'm guessing her doctor would frown on that, given the extent of her heart
> > problems ....will mention it to him though.
[quoted text clipped - 32 lines]
> >> meds when we had problems like that. At any rate, I do know how you
> >> feel. It was exhausting and depressing more for us than for her.

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