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