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Medical Forum / Diseases and Disorders / Alzheimer's / August 2006

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Daycare Dilemma

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Torpedo - 10 Aug 2006 18:24 GMT
Hi Everybody,

Today was dad's first try at daycare.  It did not go well.  He got very
agitated, spent an hour going from door to door trying to get out,  wanted
to go home, and refused to participate in any of the activities. He was
upsetting the other patients there on the end of it. They also  had a
volunteer come in with his guitar for a singalong and Dad was yelling at him
the "Shut the hell up...you can't sing anyways!"...which totally shocked me
cause if there's anything Dad does like it's music of any kind.

The Staff a the Daycare told me that this sort of behavior is not uncommon
with new entrants and suggested that I keep trying until he get a bit more
familliar with the people and the place.  They also suggested that if he
didn't improve perhaps I should call his Doctor and have medication
prescribed so that he won't get agitated.  I'm REALLY not sure if I'd even
consider that as an option.  I just don't see what the point is of doping
people up so they can go and enjoy their day at daycare  ....and shouldn't
the Staff at this facility have the skills to handle what their head nurse
told me herself was "Typical Alz. Bahaviour"?....and she also told me that
everybody in the room was on medication to prevent agitation.

Anyways, the medication they suggested was Syroquil (sp)?...Can anybody tell
me about this drug?  How it works, how long it lasts and whether or not
there are side effects?

Thanks in advance
Torpedo
Evelyn Ruut - 10 Aug 2006 19:50 GMT
> Hi Everybody,
>
[quoted text clipped - 23 lines]
> Thanks in advance
> Torpedo

Torpedo, I am sorry to tell you but you got good advice.   I know you don't
like the sound of it, but having a loved one who is agitated and delusional
and difficult is worse than giving them the meds.   I think the spelling of
the drug is Seroquel.   Not sure, so check and see.

Signature

Best Regards,

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

Dana Carpender - 10 Aug 2006 20:18 GMT
> Hi Everybody,
>
[quoted text clipped - 13 lines]
> consider that as an option.  I just don't see what the point is of doping
> people up so they can go and enjoy their day at daycare

Among other things, to give caregivers a break.  Or, in my Mom's case,
to keep her safe during the day so my brother and SIL could actually go
to *work*, take care of their kids, little things like that.  They
didn't have the option of quitting their jobs and putting their kids
last.  And once Mom started wandering, leaving her alone all day just
wasn't safe.

Fortunately Mom liked daycare.  But even if your dad doesn't, I think it
may well be a worthwhile thing to do.

Dana
Tumbleweed - 10 Aug 2006 22:00 GMT
>> Hi Everybody,
>>
[quoted text clipped - 25 lines]
>
> Dana

yep, in my fathers case it was to enable my mother to retain her sanity for
a few more months

Signature

Tumbleweed

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

Bud - 10 Aug 2006 21:20 GMT
>  I'm REALLY not sure if I'd even
> consider that as an option.  I just don't see what the point is of doping
> people up so they can go and enjoy their day at daycare

Torpedo, think of it as treating a condition and not 'doping up'. It is
to make him more comfortable and able to attend a center where he might
find enjoyment and friends with like concerns. I mean, would you not
allow pain meds for pain if the meds doped him up? That everyone there
was on medication indicates that the need for something to ease the
afflicted minds is a necessary and common therapy. I know your reaction
is from the agony and distress you're going through because of your
Dad's condition because I've BTDT as have most of the posters in this
group. Hang in there pard. There will be more difficult decisions ahead
to face and many will not be pleasant for you. I no longer have that
particular worry because my wife is too far advanced to even ambulate
without help. I may have less than a year to even have her around so
each of us goes through his own Hell and all we can do is offer you our
understanding and sympathy and best wishes that you may find the
strength to cope with this admittedly demonic disease. Good luck on your
difficult journey.

Bud
Mary_Gordon@tvo.org - 10 Aug 2006 22:08 GMT
Torpedo, seroquel might not be the drug for your father, but you should
talk to the doctor about his agitation and find out what is
recommended. Anti-psychotics like respiradol are not tranquilizers but
they do reduce the mania, the paranoia, delusions etc. and that is a
positive for everyone involved. They don't zombify - they improve mood
and reduce distress and agitation

The thing is, if your father were your three year old and at his first
day of preschool and he pitched a fit....you wouldn't throw in the
towel and decide it was not for him. You'd take that reaction in stride
and know that getting used to new things takes time, and eventually the
child is very likely to really enjoy the activities and social
interactions. Same goes for your dad.

There are so many benefits to adult daycare - its good for the person -
change of scenery, stimulation, different activities, people to
interact with. Its also important for the caregiver on 24/7 duty, since
it gives you some time to look after chores and errands, even your own
medical appointments, maybe some social activities of your own.

I think you got some good advice - don't discount daycare OR medication
just yet.

Mary G
Tumbleweed - 10 Aug 2006 22:29 GMT
> Torpedo, seroquel might not be the drug for your father, but you should
> talk to the doctor about his agitation and find out what is
[quoted text clipped - 9 lines]
> child is very likely to really enjoy the activities and social
> interactions. Same goes for your dad.

respectfully, I suggest it doesnt because his dad doesnt have the learning
capacity of a 3 year old, indeed he likely doesn't have any learning
capacity at all. certainly my dad hated every single minute of it, caused a
huge fuss when he went (more stress than was worth his absence), simply
because he couldnt understand that my mother needed some respite and that he
wasnt able to look after himself for more than 1 minute. He *never* got it,
ever, possibly because he was never someone that enjoyed 'joining in' in the
first place, and in the end stopped going, which was the trigger that ended
up with him going into care as my mother got no respite at all.

Now, some people will certainly acclimate, but I suggest that's usually
either because they are happier with the idea in the first place, or because
they show a marked decline and arent in a position to be able to complain,
or because the delusions fade as they get worse, or because of medication,
or some combination of these, rather than they get used to it and learn its
good for them.

> There are so many benefits to adult daycare - its good for the person -
> change of scenery, stimulation, different activities, people to
> interact with. Its also important for the caregiver on 24/7 duty, since
> it gives you some time to look after chores and errands, even your own
> medical appointments, maybe some social activities of your own.

Agreed

> I think you got some good advice - don't discount daycare OR medication
> just yet.
>
> Mary G

I agree the medication is the way to go, because IMHO someone who doesn't
like it is unlikely to change  to like it over time, **unless they are
declining fast**, (when time may act as the medicine), and if that doesn't
work, then either some respite care at home, or placement is needed.

Signature

Tumbleweed

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

Sue Burnham - 10 Aug 2006 23:03 GMT
> Hi Everybody,
>
[quoted text clipped - 23 lines]
> Thanks in advance
> Torpedo

Torpedo, the med is Seroquel, and you need to Google   for a while to read
all the good, the bad, and the middle road to make your own decision whether
or not  to medicate  with that drug ( or with others) for the  behavior
issues.

Astra Zeneca has been asked by the FDA to place a Black Box warning on this
drug  about   prescribing for this use,  Seroquel has NOT been FDA approved
for use  in the Elderly with Dementia, although there are a LOT of docs who
are rx-ing it  off-label.

No 2 patients are the same, and yet   we  family members all walk the  same
walk, all  walk  the same miles,  just in different shoes.

 I'd not tell you when to say  yes or no to a pharmaceutical behavior
modification... especially when you have to think about your  dementia
relative's ability to KNOW when  they are having an adverse reaction to
medication, and their ability to convey that accurately to caregivers, and
you need to have some  foundation with the caregivers  to  have a reasonable
belief that  the caregivers are aware of  ( and watching for) possible
adverse reactions.

I'm dealing with this  Seroquel issue right now with my Mom, and it  surely
isn't fun.  Perhaps the best that has come out of it is being <fired> by a
doc with serious communication issues and  <welcomed> by another doc who
embraces  partnership,  communication, and undersrtanding.

I know I'm a new face here on the NG,  and I'm not trolling, just walking
the miles  with  y'all.

Sue in Western Maine
Deborah - 11 Aug 2006 18:16 GMT
> I know I'm a new face here on the NG,  and I'm not trolling,
> just walking the miles  with  y'all.
>
> Sue in Western Maine

Welcome, Sue,

Sounds as if you've been through some tough stuff. You don't sound
like a troll at all. BTW, when did the folks in W. Maine start with
"y'all"? <lol --  there are several of us here who were practically
born saying that>

Again, welcome,Sue!
Sue Burnham - 12 Aug 2006 02:01 GMT
> > I know I'm a new face here on the NG,  and I'm not trolling,
> > just walking the miles  with  y'all.
[quoted text clipped - 9 lines]
>
> Again, welcome,Sue!

LOL  Deborah, the only people in Western Maine  who use "y'all" are folks
like me who have been online forever with folks from elsewhere  who WERE
born saying  that!  <vbg>

Thanks for your welcome.

Yes I have been  through some tough stuff with Parents, and the  last week
has been another bump in the  road.

I'm  happy that the former doc is "former", have been dealing with him for 3
years,  through the death of one parent, and now some sly dealings with the
other parent  that didn't sit well... at all.

Sometimes enough is enough and one has to move on to do what makes one feel
one has  done ones best.

At this point  in my mothers life, we need a  Doc on our  team with the
empathy--- and the desire--- to be  openly communicative rather than
invisibly didactic.

Geriatric practice inevitably leads to  End of Life.

That doesn't mean out of sight/ out of mind, or holding hands/hearts.   It
means telling us  straightforwardly what has changed  and  offering us the
ALL options with ALL their warts so we  understand we are making  mutually
informed decisions about treatment plans.

There are 3 daughters here, none of whom are inexperienced with  chronic
illness, loss , and doctors.  We are good to go with  our Med POA's, the
DNR, orders, and Advance Directives.

 A Doc who just won't engage with   the "informed consent" concept  just
won't get our trust or maintain our confidence.  Mom is well beyond the
point where she can give  "informed consent", her husband is dead and gone,
we make  ourselves easy to contact and we are all on the same page.

Bumps in the road come without invitation, we all do our best and  I hope
I'll have some things to share here  that will help others along the road,
if its only BTDT.

Thanks for the welcome and sorry for the novel.... some pent up stuff...
please forgive.

I guess I could have introduced myself  more formally, but  I accepted your
kind invitation.

Thanks!

Sue in Maine
Deborah - 15 Aug 2006 04:19 GMT
Responses interspersed -- I have a failing mouse -- so sorry!

>> > I know I'm a new face here on the NG,  and I'm not trolling, just
>> > walking the miles  with  y'all.
[quoted text clipped - 13 lines]
> folks like me who have been online forever with folks from elsewhere
> who WERE born saying  that!  <vbg>

<VBG in return>

> Thanks for your welcome.

You are more than welcomed here, Sue.

> Yes I have been  through some tough stuff with Parents, and the  last
> week has been another bump in the  road.
[quoted text clipped - 37 lines]
> Thanks for the welcome and sorry for the novel.... some pent up
> stuff... please forgive.

Don't think about it ever, again, Sue. You're among the cognoscienti,
here. Vent at will. Someone -- it will probably vary, depending on whoever
is least stressed at the moment -- will most likely reply. Give us a day
or a few. As caregivers, even long distance ones, time to reply to groups
is sometimes, though not always, restricted.

> I guess I could have introduced myself  more formally, but  I accepted
> your kind invitation.
>
> Thanks!
>
> Sue in Maine

We all grieve with you, Sue, while we also welcome you. This is a
wonderfully supportive group.
Sue Burnham - 16 Aug 2006 21:39 GMT
top posting ( sorry)

THANK YOU!

> Responses interspersed -- I have a failing mouse -- so sorry!
>
[quoted text clipped - 79 lines]
> We all grieve with you, Sue, while we also welcome you. This is a
> wonderfully supportive group.
Chuck Whealton - 10 Aug 2006 23:16 GMT
> Hi Everybody,
>
[quoted text clipped - 23 lines]
> Thanks in advance
> Torpedo

Torpedo:  Unfortunately, part of handling "typical alzheimers behavior"
is many/most times to use pharmaceuticals made to handle it.

I understand the way you feel.  I'd be willing to bet that most, if not
all people here understand it.  It almost feels like another run down
the ladder towards the end - at least it did for me.  You never want to
have to put somebody on medications for dementia, but unfortunately,
most times there isn't much of a choice.

And many times, you have to try multiple types and combinations of
pharmaceuticals until you find the mixture that'll be the most help to
your loved on.  That's not fun either.

One of the other posters mentioned Seroquel, which is for scizophrenia
(sp?).  That works for many, but not all.

It's not pleasant, but when you think about the fact of what your
Father is going through, if the only way you can get him to settle
down, interact with others, and hopefully enjoy himself is to use
pharmaceuticals, that may not be the worst thing that could happen.

Good luck... It's not fun, but you are far from alone.

Charles R. Whealton
Charles Whealton @ pleasedontspam.com
Torpedo - 11 Aug 2006 03:18 GMT
Thanks to all of you for your words of wisdom.

One of you mentioned the word "zombified".....that's what I'm most concerned
about.  I can definately understand the need for meds that will assist with
behaviour and lessen agitation. But what I saw today wasn't that...it was
people who were "zombified".  I even asked the head nurse if my Dad was too
far advanced for this program because he seemed to be the only one who had
any sort of movement, except for the people who worked there.  Everyone else
was sitting, staring off into space.

We've had some experience with an anti-psychotic, namely Respiridal.  I am
very familiar with this drug because my son has Tourette's Syndrome and OCD,
and has been taking it for close to 6 years. When Dad came to live with me,
after my mother's death, while everything was in the process of being packed
and straightened out,  Dad got quite agitated,  which I thought was
completely understandable given the fact that he had just been through his
wife's death and there was a women (me) he couldn't quite remember going
through all of his things.  His Dr. prescribed Respiridal, which I thought
was a good choice at the time.  Dad did not do well on it at all.  It
actually made teh situation worse by causing halucinations, to the point
where he was swatting at things he thought he saw in the air...and walking
into walls because he thought he could see a door...  he had not had any of
this prior to taking that drug. Once I discontinued it he was fine, and has
been fne ever since.  He's had no more halucinations.

At this point in time Dad's Doctor is a GP who deals specifically with
elderly patients, no specialization, it just seems her clients are mostly
the elderly.   She is not a specialist.  So, I'm going to call her tomorrow,
explain the situation and ask to be referred to a Doctor who specializes in
either Alzheimer's or Geriatric Medicine.  The Head Nurse at the nursing
home gave me a name.

If nothing else it's a start.

Thanks again to all of you for the info and advice.   It is very much
appreciated.

Torpedo

> Hi Everybody,
>
[quoted text clipped - 23 lines]
> Thanks in advance
> Torpedo
Lee - 11 Aug 2006 15:24 GMT
one thing to keep in mind is that sometimes even people's reactions to a
particular medication.

My MIL did HORRIBLY the first time we tried her on Respiridol - was up all
night; caught her once at 4 a.m. putting on her coat to head outside to look
for 'the other dogs'   ...and was more agitated and difficult to deal with
than she had been without anything. Ended up on Zyprexa instead.

A couple of years later though, when the zyprexa was SO not working for her
any more, Rispiridol was again prescribed; this time it has made all the
difference.  She sleeps through the night now (has since last November when
she started on it), is content during the day, and the only imaginary people
she talks to now are friendly ones.

she's much happier and much much easier to deal with - have recently cut her
dosage in half and she's still doing great.

> Thanks to all of you for your words of wisdom.
>
[quoted text clipped - 64 lines]
>> Thanks in advance
>> Torpedo
adstavis@gmail.com - 11 Aug 2006 15:57 GMT
> Thanks to all of you for your words of wisdom.
>
[quoted text clipped - 5 lines]
> any sort of movement, except for the people who worked there.  Everyone else
> was sitting, staring off into space.

Dear Topedo,

It may in fact be a case of over medicating. Or it may simply be a
confluence of disease progression and the demographics of the patient
pool where you live. Sadly, as the various dementias progress, our
loved one's ability to respond to outside stimuli is reduced. They do
appear zombified.

> We've had some experience with an anti-psychotic, namely Respiridal.  I am
> very familiar with this drug because my son has Tourette's Syndrome and OCD,
[quoted text clipped - 10 lines]
> this prior to taking that drug. Once I discontinued it he was fine, and has
> been fne ever since.  He's had no more halucinations.

Some patients with frontal lobe dementias have hallucinations from some
psychtropic medications. Don't remember which. My FIL didn't have that
reaction, despite a confirmed diagnosis of frontal lobe atrophy.

Frontal lobe dementia's, like Pick's Disease (and others, including
sometimes, vascular dementia), start with deterioration in the front of
the brain and move slowly towards the rear. They often show themselves
first through agitation, paranoia, difficulty finding the word one
wanted to use, compulsive behaviors, trouble with sequencing or
following directions and exagerrated emotional responses. It's a
slightly different progression from AD, which begins at the rear of the
brain and moves forward and tends to affect memory earlier in the
progression. The frontal lobes are where executive function is
governed. Like how well you can make your behavior conform to societal
expectations, how well you can govern emotions, how well you can go
through a sequencing process (like showering).

My FIL had some sort of frontal lobe dementia. He was always pretty
mild mannered - very formal. One could have a reasonable conversation
about one of his hobbies. When he couldn't find the right word, he'd
try to 'talk around it' ("you know, that thing you use to tighten
bolts..." or, "You know, that thing, um about this long,... well
whatever. Anyway..."). Then he would start talking about the people who
come in at night and hide his things, which is why all doors must be
locked at all times, even screen doors. He entered every sweepstakes
that came in through the door, including the 'send a dollar' scams - a
definite change from someone who prided himself on his Scottish
frugality. He was a woodworker who stopped doing projects because he
could no longer understand the directions for projects. But if you
tried to stop him from driving, he'd blow up at you and threaten
violence. If touched during a hallucination, fight or flight would
emerge and he'd get viloent.

A PET scan will show where the atropy has affected the brain, though it
won't differentiate between the different causes. Atrophy of the front
of the brain could be Pick's, could be dementia with Lewey Bodies,
vascular dementia, of something else. Dementia at the rear could be AD,
vascular dementia or hundreds of other causes. It will however give you
some insight into how the disease might progress for your father and
confirm atrophy of the brain as an umbrella diagnosis.

> At this point in time Dad's Doctor is a GP who deals specifically with
> elderly patients, no specialization, it just seems her clients are mostly
[quoted text clipped - 4 lines]
>
> If nothing else it's a start.

A good gerontologist is a gem. And if you can find a Neuro-psychiatrist
who specializes on dementias, you have hit rare pay dirt. They are
often more educated about the different medication options and
combinations which best keep our loved ones comfortable.

It's a fine line between emotionally even and overmedicated. But if you
can find the right balance, vague contentment wins over confused and
fearful agitation any day. In fact, as someone who has personally
experienced anxiety attacks, I might even choose zombified.

Adelle
Alan Meyer - 11 Aug 2006 20:02 GMT
> Thanks to all of you for your words of wisdom.
>
> One of you mentioned the word "zombified".....that's what I'm most concerned about.

It looks like zombification is one of the effects of Seroquel.
It makes people very drowsy.

It's a drug approved for schizophrenia and bipolar disorder.
Like most drugs prescribed for elderly patients, it's being
prescribed off-label, which means that no clinical trials have
been done for this use and the FDA therefore has no
information about whether it works for this use or not.

There's a good wikipedia article on it at:

 http://en.wikipedia.org/wiki/Quetiapine

There's a link at the bottom of the article to reports by
patients taking the drug - mainly for schizophrenia or
bipolar disorder.  For some of those people, the drug
seems to be a lifesaver.  All however seem to report heavy
drowsiness and weight gain.

If you do decide to go the drug route, I recommend starting
with very low doses of whatever drug you try, and observing
your father very carefully.  Elderly patients often have lower
tolerances and worse side effects than young people.

Good luck.

   Alan
Mary_Gordon@tvo.org - 11 Aug 2006 20:31 GMT
For about the last two years of my MIL's life, she was pretty much in a
stupor a lot of the time - either drowsing, or sort of just vacantly
sitting there. She used to sing to herself, and rant and rave in a
garble every now and there, but seemed barely aware of her surroundings
and the people around her - most of the time she wouldn't really react
to what was happening near her. Even her eyes looked dull. My husband
commented once that her eyes started reminding him of animal eyes in
that the spark of intelligence behind them had gone.

She wasn't on any medications at all when this happened - not a single
drug at all other than her B12 shots for her anemia - she died in 1999,
before Aricept was available here. The zombification was entirely a
function of the disease, which is awful to think.

I do know what you mean - when my MIL first moved into a locked AD
ward, she was relatively high functioning, and I was truly horrified by
the condition of other residents - I hadn't had much experience with
late stage AD, and was hauled up short by the reality - and the worst
of it was, before too long, the disease continued to progress, and she
was the same.

M.
Evelyn Ruut - 11 Aug 2006 20:51 GMT
> For about the last two years of my MIL's life, she was pretty much in a
> stupor a lot of the time - either drowsing, or sort of just vacantly
[quoted text clipped - 18 lines]
>
> M.

Our experience paralleled yours, in that my MIL thought all the people at
the daycare center were "crazy" and that she was not "crazy" and made
certain we knew how she felt.   There were some who were higher functioning
and some who were totally zombified, but sadly there did come a time when
she was as bad as any of them were.

No doubt about it, it is a lousy disease.

Signature

Best Regards,

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

Dennis P. Harris - 12 Aug 2006 06:44 GMT
> I can definately understand the need for meds that will assist with
> behaviour and lessen agitation. But what I saw today wasn't that...it was
> people who were "zombified".  I even asked the head nurse if my Dad was too
> far advanced for this program because he seemed to be the only one who had
> any sort of movement, except for the people who worked there.  Everyone else
> was sitting, staring off into space.

and it's not due to the meds, it's due to the fact that they have
dementias more advanced than your father's.  i know that you find
it upsetting, because i suspect that deep down you are afraid
that your father will end up like that.

please don't think i'm cruel, but i'm trying to be realistic.
you can only expect things to get worse, never better, except for
the occasional moment when a few neurons will connect for a few
instants.  sorry, but it's going to happen, and denial is not a
river in egypt.

so think of it this way:  what good does it do for him to have
the full use of what little faculties he has left if it only
makes him agitated, upset, and paranoid?  

seroquel may not be the drug he needs, it could be something
milder or something stronger (it took strong risperdol doses for
a few days to calm my mother down, and then other meds after).
this is the time when a geriatric psychiatrist is what you need.
ask her doc for a referral.  ask her/him for the data sheets for
what's recommended, and if possible discuss it with her/him,
including plans for monitoring and increasing/decreasing dosage.
LuvMyMom - 12 Aug 2006 05:10 GMT
Hi Torpedo

I am so sorry your Dad's first day at an Alzheimer's
socialization/activity program went so poorly.

I'm not sure how to interpret what you have said.  There are so many
things that could have led to this 'bad day'...

Regarding "everybody in the room was on medication to prevent
agitation"  Who specifically said that to you?  The Program Director?
I'd check with those responsible for running the program before I took
that to be fact.  It sounds very unlikely to me.

I just went through the enrollment process for a mid-advanced dementia
program (for my Mother advanced MID/AD) and they specifically
recommended against family practitioners prescribing antidepressants
and/or antipsychotic medications, Seroquel being one of them.  I was
told that they usually assess behaviour and causes that can be ruled
out (environmental/medical/stress/physical etc)  They have a geriatric
pschyciatrist on staff and told me that most participants (they do not
call them patients) do not require medication of that form. And you are
right it dulls the reality and senses they have left. (imho)

Regarding New Entrant Stress...

I have only my recent and personal experience to share.

My Mom previously attended a "Senior's Day Away Program", for several
years .  It was geared toward all Seniors. They were able to support
Seniors up to mid-stage dementia.  It was a fantastifc program for her
early to mid stages - maintained a lot of personal dignity and
integrity.  Unfortunately, those days are over now.  We are still
attempting to manage Mom at home.

Last week we entered Mom into a "Day Away Program" that is capable of
dealing with all stages of dementia including "very late stage
dementia." ( "up to the end" as the director put it)  I was very
worried as to how Mom would recieve the new surroundings and being
without us - she calls anyone of us (me, my sister, my father, her
personal support worker) umpteen times an hour.  We were all a little
frightened that her general aggitation and disruptive behaviour would
affect other participants.

So I thought I'd ease Mom into the program slowly - that was my plan -
start with baby steps, make it enjoyable and increase the time that she
was there over several visits.

So I started Mom off with a program that began with music.  My Mom
loves Music! It seems at times as though that is all she is able to
still enjoy.  (she can barely walk, needs full assistance with
toileting, is incontinent at night, requires hand feeding and can no
longer hold a cup for any length of time - But she still knows who we
are!!)

The program began with a music therapist playing piano and singing
songs -  she loved it.  I was crying so hard when I left her there - it
was a very weird experience for me - I brought her there for her and it
felt as though I was abandoning her.   I left for only an hour ---- 1/2
hr after the music program was to end I came back and she was doing
well with a sweet Scottish woman.  I was a bit dismayed and discouraged
because the Scottish woman said that she might do better in the day
program (this is an afternoon/evening program) - more staff - she had
to spend the entire time with mother and they didn't really have the
staff in the evening program.

The program director  - worried about how upset I was when I left Mom
there earlier - took the time to speak with me when I came to pick Mom
up.  She encouraged me to try again next week and to have Mom stay
through dinner at least.  I said YES.

So next Thursday it was - stay till dinner --4 1/2 hrs!!  I left my
phone #!  Call me if there is a problem or if she needs me!  No calls!
Great!   I showed up at dinner.  Mom was so sweet.  Oh Suzanne -- give
me a hug - the other sweet ladies at the table 'oh awwe' when Mom said
she loved me - Very sweet.  I ask Mom if she was ready to go home.
WHY?  Mom do you want to go home and see Dad and ... and the dogs.
WHY???  Can't we stay??

So I left her there for another hour and 1/2 to stay for the sing along
and etc.  When I came back she was still happy to see me but still
didn't want to go home.

We figured out later that she thought we were there with her (me and
her PSW).  She also thought that she was at the old "day away program"
She's excited to go back.

Today I called the Program Director - she really wanted to know how I
was doing - we laughed about my fears and worries - and then we signed
Mom up for Saturday (tomorrow) and every Tuesday, Thursday and Saturday
for the foreseable future.

So it's Elvis Presly Day tomorrow.  Mom wants to make sure her clothes
are clean and that she looks good.

It's really hard for me to understand how little my mother understands
because I focus so much on how much she does understand.  I'm not sure
at times whether that is a good or a bad thing.

I just know that regardless of how little she knows she wants to feel
human and independent.  I know being on her "own" makes her feel just
so. Thankfully this program makes her feel that way.

It sounds as though the program your father tried out made him feel as
though he has lost his sense of independence ( I wouldn't want to feel
like a caged rabbit running from door to door looking for a way out -
I'd ask that you should kill me first)

So maybe it's the wrong program for your father, maybe it's the wrong
time, maybe its the wrong approach to it.  I know nothing and I have no
answers. But I ask that you not give up trying.  With a lot of love and
even more patience and understanding you will figure it out.  It won't
be easy - but it stands a good chance of being worth it.

All the love, luck and peace one can send via email
Suzanne

> Hi Everybody,
>
[quoted text clipped - 23 lines]
> Thanks in advance
> Torpedo
LuvMyMom - 12 Aug 2006 06:26 GMT
I wrote my lenghty, extremely lengthy, post before I read all of the
other responses

So I have a few more things to add

1 the Program Director of Mom's program a (regional government run
program - Ontario) specifically said NO to Resperidol !!! BAD BAD BAD!

2.  My Mom has had 'friends' that don't exist and been agitatated and
frustrated - but the times she is out in an evnironment that she is
happy in - no hallucinations and no 'friends' - she has also been very
tired afterward, slept well and no 'hallucinatory friends"

3.  NONE!!! NONE!! of the participants appeared as though they were
ZOMBIES - many were late stage dementia - some with no mobility (Mom
can still get out of her wheelchair with a 2 person assist to toilet -
others couldn't)  I saw light in there eyes when the music played and
the odd finger or toe tap and many smiles.

4.  When I visited Nursing Homes so as to get on the list  - this
VACANT behaviour was the norm - not the exeption!  DRUGS be the cause
NO DOUBT!

4.  I know someone who was prescribed resperidol in a psych ward - they
were vacant - they were just not there - and after release they felt as
though they had no choice but to discontinue resperidol to be able to
contribute to being alive - resperidol caused blurred vision and an
inability to read (PhD - always read)  inability to hold a thought for
any length of time and NO SENSE of contentment - just a complete loss
of self.

There is a lot of information about "Guidelines for Managing
Alzheimer's Disease"
http://www.aafp.org/afp/20020615/2525.html

at this link - it is complicated and confusing - but a place to start.

Best of luck

Suzanne

> Hi Everybody,
>
[quoted text clipped - 23 lines]
> Thanks in advance
> Torpedo
Dennis P. Harris - 12 Aug 2006 07:16 GMT
> 4.  When I visited Nursing Homes so as to get on the list  - this
> VACANT behaviour was the norm - not the exeption!  DRUGS be the cause
> NO DOUBT!

please tell us how you arrived at that conclusion.  there is a
vast difference between early and late stages.
LuvMyMom - 13 Aug 2006 03:10 GMT
Yes, I was a little off the handle with that statement - just
frustrated I supposed.

But it is highly likely that most were on some type of antipsychotic
meds - a very very common practise - you can't deny that.

When I was looking at nursing homes my mother's disease was not as
advanced as it is today.  There were many people in the homes that were
far less 'advanced'.

I understand that the disease does progress to this 'vacant state' in
the late late stages.  But many people are placed in nursing homes long
before they are at that point.  I found it extremely odd that they all
seemed so VACANT.  I saw the same thing in every nursing home I went to
(6 or 7).  Maybe it was the time of day - I wasn't able to see any of
the residents in an activity - so perhaps they were different when
things were going on.  It just all seemed so lifeless and no one was
'acting up'  that seemed very very strange.  It would stand to reason
that at least someone would be upset and aggitated enough for me to
take notice.  It just didn't feel right - it just didn't make sense.
I'm sorry I can't explain better than that.

I spent a great deal of time talking to family members about how they
felt their loved one was being treated and how they were doing - they
all said everything seemed fine, most thought the staff were nice etc.
Most also noticed a remarkable decline shortly after being placed.

Now that my Mom is attending a community day away program in a
regionally run nursing home - I'm gonna take a closer look about and
I'll let you know what I see.  I'm actually considering putting Mom on
the list at this facility.

I know much a nuttin - I only have my feelings and my opinions
regarding what I've experienced and seen.

> > 4.  When I visited Nursing Homes so as to get on the list  - this
> > VACANT behaviour was the norm - not the exeption!  DRUGS be the cause
> > NO DOUBT!
> >
> please tell us how you arrived at that conclusion.  there is a
> vast difference between early and late stages.
Dennis P. Harris - 13 Aug 2006 19:38 GMT
> I found it extremely odd that they all
> seemed so VACANT.  I saw the same thing in every nursing home I went to
[quoted text clipped - 5 lines]
> take notice.  It just didn't feel right - it just didn't make sense.
> I'm sorry I can't explain better than that.

that's the way advanced dementias are.  very passive, a lot of
sleep.  it doesn't make sense because you 1] are not used to
seeing it, and 2] you're in denial.
LuvMyMom - 14 Aug 2006 04:15 GMT
Dennis,

You cut my post short - cropped the first 2 sentences off.

I've copied my original paragraph and you will note that I spoke about
earlier AD not late stage

"I understand that the disease does progress to this 'vacant state' in
the late late stages.  But many people are placed in nursing homes long

before they are at that point. "

Dennis there is no way shape or form that I am in denial. I work very
hard, very very hard to maintain whatever quality of life and dignity
my Mother has left.  And yes I am very fortunate to have a lot of
resources available to me.

My Mother is in a very advanced stage of this disease - she can't feed
herself (she can ocassionally hold a cup) she doesn't understand most
normal daily life things most of the time - but she does connect and
can - We had a great outing today at a Blues, Brews and BBQ festival.
She loved the music, a brew and the bbq - she enjoyed meeting a few
freinds of mine - she was great - it was great.  There were times that
she 'zoned out' but SHE WAS THERE!  and had a great time!

Most people - community care etc. thought Mom should have been placed
years ago.  I have had the ability and resources to keep her out of a
facility.  I am certain many of the people in the nursing homes were
not anywhere near as 'advanced' as my mother when placed.  That was my
point in the 2 sentences you deleted.

I hope you see what I was saying now.

Suzanne

> > I found it extremely odd that they all
> > seemed so VACANT.  I saw the same thing in every nursing home I went to
[quoted text clipped - 9 lines]
> sleep.  it doesn't make sense because you 1] are not used to
> seeing it, and 2] you're in denial.
Dennis P. Harris - 15 Aug 2006 03:39 GMT
> You cut my post short - cropped the first 2 sentences off.

i destest posts that quote the entire message when they only
reply to one part of it.  i quoted the parts to which i was
responding.
Tumbleweed - 12 Aug 2006 09:30 GMT
> 4.  When I visited Nursing Homes so as to get on the list  - this
> VACANT behaviour was the norm - not the exeption!  DRUGS be the cause
> NO DOUBT!

Remarkable!!  With one look you were able to assess all those patients, know
there past history, know that that they were on drugs now, and know that the
drugs were the cause of the vacant behaviour, rather than, lets say, some
alternative cause, for example, it being a nautral consequence of late stage
Az. Absolutely oustanding, well done.

Signature

Tumbleweed

email replies not necessary but to contact use;
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Torpedo - 12 Aug 2006 11:43 GMT
In my case, I came to my conclusion regarding the participants being
"zombified" because the head nurse at the program actually told me that
everybody in the room was taking medication to prevent agitation.

We had this conversation as she was suggesting that I don't give up on the
program...that if dad didn't settle in, there are drugs that could help,
then she went on to list off two or three different medications I could
consider. Syroquel and Respiridal being two of them.

I live in a vary small place and this day program is the only one of it's
kind in my entire Province.  So, I have to make a decision.  IF Dad attends,
I have to agree that he'll have to be medicated.  If he doesn't go, I have
absolutely no time off.

I have Dad scheduled for two weeks respite at the end of September, too,  in
another nursing home close by, on a locked ward.  If I don't agree with
giving him these medications, he'll most likely have the same reaction to
being there and again...I will get absolutely no time off.

I've been doing this, with some help from my son and husband,  for 17 months
now....I am physically tired and emotionally drained.  I think it's to the
point now where I'm going to have to make these decisions to guard my own
health and sanity.

I dunno....tried to get hold of his Dr. yesterday, but was unsuccessful.
I'l try again on Monday.

Torpedo

>> 4.  When I visited Nursing Homes so as to get on the list  - this
>> VACANT behaviour was the norm - not the exeption!  DRUGS be the cause
[quoted text clipped - 5 lines]
> say, some alternative cause, for example, it being a nautral consequence
> of late stage Az. Absolutely oustanding, well done.
Tumbleweed - 12 Aug 2006 12:52 GMT
> In my case, I came to my conclusion regarding the participants being
> "zombified" because the head nurse at the program actually told me that
[quoted text clipped - 24 lines]
>
> Torpedo

Indeed, and ask yourself if your father is in a better state if agitated and
upset all the time. maybe being 'zombified' is the least worst choice you
can make, rather than thinking there has to be a 'good' choice where
everything is wonderful, I dont think there usually is with this condition.
You can only do so much. When you have reached your limit, thats it.

A friend of mine is taking his mother into a home today, he has reached his
breaking point, and cant cope any more. ostensibly its for two weeks
respite, but his feeling is its likely to be long term, eg no coming back
home. Nearly everyone hits these points, dont beat yourself up about it
Signature

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email replies not necessary but to contact use;
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Torpedo - 12 Aug 2006 13:04 GMT
I'm not to the point where I need to put Dad into a nursing home, yet.  I
know that will eventually come, but right now I just need a break so that I
can recharge...and I'm intelligent enough to realize that if I don't get a
break soon, I'm not going to be able to continue coping....Dad very well
could end up in a nursing home long before he really should be..and I really
don't want that to happen.

Neither is a good choice...the meds..or me going nuts . But after reading
everyone's posts and dong some thinking on it it seems to me that going the
medication route is definately the lesser of two evils right now.

>> In my case, I came to my conclusion regarding the participants being
>> "zombified" because the head nurse at the program actually told me that
[quoted text clipped - 36 lines]
> respite, but his feeling is its likely to be long term, eg no coming back
> home. Nearly everyone hits these points, dont beat yourself up about it
Tumbleweed - 12 Aug 2006 13:16 GMT
> I'm not to the point where I need to put Dad into a nursing home, yet.  I
> know that will eventually come, but right now I just need a break so that
[quoted text clipped - 6 lines]
> everyone's posts and dong some thinking on it it seems to me that going
> the medication route is definately the lesser of two evils right now.

take your break, sounds like you need it. Good luck.

Signature

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Evelyn Ruut - 12 Aug 2006 13:37 GMT
> I'm not to the point where I need to put Dad into a nursing home, yet.  I
> know that will eventually come, but right now I just need a break so that
[quoted text clipped - 6 lines]
> everyone's posts and dong some thinking on it it seems to me that going
> the medication route is definately the lesser of two evils right now.

It was for us too, Torpedo.   It wasn't a cure, but she was a lot happier
person.
Without them, she would have ended up in a locked ward a lot sooner.

Signature

Best Regards,

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

Dana Carpender - 12 Aug 2006 23:24 GMT
> I'm not to the point where I need to put Dad into a nursing home, yet.  I
> know that will eventually come, but right now I just need a break so that I
[quoted text clipped - 6 lines]
> everyone's posts and dong some thinking on it it seems to me that going the
> medication route is definately the lesser of two evils right now.

:-)

I'm glad.

Dana
LuvMyMom - 13 Aug 2006 04:28 GMT
Torpedo

I can see that you love your father very much and only want the best
for him.  Med's might be the least overall 'cost'.  You have to do what
you need to do to take care of yourself so that you are able to take
care of him.

I just thought I should mention that when my Mom was in mid stage
dementia she started acting aggitated and not sleeping well and other
'weird' and annoying stuff.  I asked the family physician to refer her
back to the geriantrician - he found that she was hyperthyroid - once
treated a lot of those problems went away.

Also, now Mom is having difficulty with regular bowel movements - when
constipated she hallucinates and her 'friend' is around a lot - dealing
with the constipation resolved a lot of the problems I previously
attributed to the disease.

My suggestion is to exhaust all potential underlying causes.  The
resulting behaviours may not be attributable to the disease.

My Mother also used to take galantamine (reminyl) in the morning and at
night and wasn't sleeping well so was very aggitated during the day and
talked all night long!!! We stopped the night time dose and things went
a lot better - she started sleeping through and was bright and cheery
in the am.

Is your father on Ebixa (memantine)?  That drug also purports the
ability to lessen aggitation

http://www.medicalnewstoday.com/medicalnews.php?newsid=32125

"Ebixa has also proven effective in reducing some of the core and most
distressing symptoms of AD. Study results have demonstrated that
Ebixa-treated patients experienced significant benefits in memory,
language and the ability to perform daily activities. Furthermore,
Ebixa has proven effective in significantly reducing levels of
agitation/aggression, delusions and irritability in patients with AD. "

I also give my mom about .5mg of melatonin one hour before bedtime -
she has a solid uninterrupted sleep the whole night through (except
briefly around 4 am when she complains of back pain - which means she
has wet depends - a quick change and she's back to snoring in no time)

Exercise is also extremely key to avoid aggitation and aggression.
There are a lot of non-pharmacological approaches to reducing
aggitation and stress.  If you can't find a fantastic doctor - keep
researching and reading - there is a lot of really good verifiable info
available out there.

I don't know your situation regarding communinty support but it should
be there for you.  My Mom is entitled to 10hrs a week of personal
support and 336 hours a year of alzheimer's respite in addition to any
programs I can get her into.

There are still some programs I haven't accessed yet.  eg. a
Recreational Therapist that will come to the house bi-weekly and train
us how to entertain and recreate mom.

We have a physio therapist come 2x a week - Mom's benefits pay for that
(quite expensive).

Personally, I'm still not ready for Mom to take even a weekend respite
at the nursing home - that's just me - but I'm guessing she'd probably
be ok with it and might even have a good time some of the time.  My
worry is that she's so used to having someone sleep in her room with
her that she would freak out being alone - but now that I have her
sleeping under control - she'd probably be ok?

Anywho - you will figure out what is best for all - hope some of my
thoughts help.

Best wishes
Suzanne

ps please read this about Seroquel
http://www.newstarget.com/004951.html
Torpedo - 13 Aug 2006 13:32 GMT
No, my father is on Exceleon, twice daily...and Oxazepam to help with sleep.
His Doctor has recently suggested stopping the Excelon but did not mention
exchanging it for another medication.

His agitation occurs mostly when he is in an unfamiliar place or if there
are unfamiliar people around. He also gets agitated if I take him in the
car..I think he's afraid that we might get lost.  As far as problems at
home, so far, there are not many and certainly nothing that is not
manageable.  He rummages through things, I find things in very odd places,
he has to be continually coaxed to eat, he needs assistance with bathing,
shaving and dressing, although he is still able to go to the toilet himself.
He sleeps ALOT, he asks to go home, or where is Mother is, he paces and
sometimes tries to wander (I've been lucky enough to be able to prevent him
getting out by installing alarms on the doors).  Sometimes he can remember 5
minutes ago...but sometimes he can't remember 5 seconds ago.

By comparison to other descriptions I've read here...I realize that so far I
don't have it too bad.

A previous poster mentioned seeing the same things in a nursing home that
he/she had visited...that "zombified" look.  And I agree...it just seemed
very odd that EVERYBODY there had "the look"...and then the Nurse told me
that they were ALL on medication.  Makes you wonder....

> Torpedo
>
[quoted text clipped - 73 lines]
> ps please read this about Seroquel
> http://www.newstarget.com/004951.html
Tumbleweed - 13 Aug 2006 13:42 GMT
> No, my father is on Exceleon, twice daily...and Oxazepam to help with
> sleep. His Doctor has recently suggested stopping the Excelon but did not
> mention exchanging it for another medication.
>
> His agitation occurs mostly when he is in an unfamiliar place or if there
> are unfamiliar people around.

That is standard Az behavour AFAICS. My father now can get
concerned->agitated (it depends) if he goes outside to sit in the sun with
us (If the weather is nice we prefer to sit outside)  when we visit, because
"there arent all those people here".

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Torpedo - 13 Aug 2006 16:06 GMT
Which illustrates my original point exactly.   It is very typical behaviour
and you'd figure that TYPICAL Alz behaviour would be able to be accommodated
at a day program for Alz patients wouldn't you??

>> No, my father is on Exceleon, twice daily...and Oxazepam to help with
>> sleep. His Doctor has recently suggested stopping the Excelon but did not
[quoted text clipped - 7 lines]
> us (If the weather is nice we prefer to sit outside)  when we visit,
> because "there arent all those people here".
Tumbleweed - 13 Aug 2006 16:30 GMT
> Which illustrates my original point exactly.   It is very typical
> behaviour and you'd figure that TYPICAL Alz behaviour would be able to be
> accommodated at a day program for Alz patients wouldn't you??

except, in that case, the 'treatment' would be to place him inside 'with all
the other people' where he'd sit on a chair and promptly fall asleep,
exhibiting behaviour that might look, to some people who didnt know, as if
he had been sedated! In fact, his common statement to me is its night and he
wants to go to bed....I presume because he is tired he associates being
tired with nighttime and wanting to go to bed,and its not like there is
something else he can do instead unless he is getting very close
attention,when he does join in with activities like singing. But left to
himself, there is nothing he can do, he cant follow a story so he cant
read,for example, even watching the tv would be a waste of time.  FWIW he is
on no other medication than memantine.

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Dennis P. Harris - 13 Aug 2006 19:45 GMT
> t just seemed
> very odd that EVERYBODY there had "the look"...and then the Nurse told me
> that they were ALL on medication.  Makes you wonder....

and as i said before, you shouldn't believe everything nursing
home staff tells you.
ladylove77 - 13 Aug 2006 21:38 GMT
Torpedo, your mention of riding in the car reminded me of my husband.  We
lived in central Florida and would visit our children in Montgomery, AL.
All the way he would insist that I had turned the wrong way, the we would
never get there the way I was going.  When I had to run an errand in town
and couldn't leave him by himself, I would take him, and always on the way
home, he would say, "I'm never going with you anywhere again.  I will stay
at home".  Crowds made him very uncomfortable, and loud noise really drove
him crazy.  We were at our childrens' home in Montgonmery and the four of
them had been off somewhere and were all talking and laughing when they came
in the house.  We were in the room next to them and he turned to me and
said, " I wish they'd go home".  We still laugh about that!
Gwen

> No, my father is on Exceleon, twice daily...and Oxazepam to help with
> sleep. His Doctor has recently suggested stopping the Excelon but did not
[quoted text clipped - 98 lines]
>> ps please read this about Seroquel
>> http://www.newstarget.com/004951.html
Evelyn Ruut - 12 Aug 2006 13:35 GMT
> In my case, I came to my conclusion regarding the participants being
> "zombified" because the head nurse at the program actually told me that
[quoted text clipped - 24 lines]
>
> Torpedo

Torpedo, please be aware that these things should be decided case by case
between the family and the doctor.    I just posted a reply to Sue a few
minutes ago.

We found it necessary to start my mother in law on an antipsychotic
medication.... it was either that, or put her in a nursing home in a locked
ward while she was not really bad enough to need it.   She was started on
one pill a day, it was increased to two, then backed down later on to only
one, then taken away altogether to preserve what function she had left.   It
is important to know this.

For us it worked out OK.   The ultimate is this;   Speaking for myself, if
it were me, and I were delusional and agitated and had alzheimers disease,
and my daughter was caring for me and at her wits end not able to help me to
live in some kind of peace, yes, I would take it myself.

Signature

Best Regards,

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

Dennis P. Harris - 12 Aug 2006 22:46 GMT
> In my case, I came to my conclusion regarding the participants being
> "zombified" because the head nurse at the program actually told me that
> everybody in the room was taking medication to prevent agitation.

i seriously doubt if she was telling you the truth.  she was
probably just trying to persuade you to get your father on meds.
wrong tactic, of course.

> We had this conversation as she was suggesting that I don't give up on the
> program...that if dad didn't settle in, there are drugs that could help,
[quoted text clipped - 5 lines]
> I have to agree that he'll have to be medicated.  If he doesn't go, I have
> absolutely no time off.

it sounds like a simple decision to me.  remember that if the
meds cause problems, you can stop them (with some you MUST taper
off though).  remember also that some meds can take a week or
more for there to be a constant therapeutic level in the blood.

> I have Dad scheduled for two weeks respite at the end of September, too,  in
> another nursing home close by, on a locked ward.  If I don't agree with
[quoted text clipped - 5 lines]
> point now where I'm going to have to make these decisions to guard my own
> health and sanity.

those of us that have already been there have told you that there
are times when you need to try meds if only to make it less
stressful for your LO, much less yourself.  if you intend to keep
him at home, it's probably the only way.  it's not only stressful
to him, but to the entire family.

if you can get the assistance of a geriatric psych doc or a neuro
doc experienced with dementias, do so.  which meds will work
depend on the type of dementia, as others have noted in this
thread.
Torpedo - 13 Aug 2006 13:36 GMT
Well I would certainly hope that a professional in that situation would not
use out and out lying to family members as a tactic to persuade.  Although I
agree that it certainly is possible.

I will FREAK OUT if I find out that Nurse was lying to me.

>> In my case, I came to my conclusion regarding the participants being
>> "zombified" because the head nurse at the program actually told me that
[quoted text clipped - 45 lines]
> depend on the type of dementia, as others have noted in this
> thread.
Evelyn Ruut - 13 Aug 2006 14:05 GMT
> Well I would certainly hope that a professional in that situation would
> not use out and out lying to family members as a tactic to persuade.
> Although I agree that it certainly is possible.
>
> I will FREAK OUT if I find out that Nurse was lying to me.

Suzanne,

Don't freak out, but I honestly think she was exaggerating greatly, and I
will tell you why.

It is pretty much standard nursing home practice to take the people off all
medications when they come there, in order to establish a new baseline.
The reason for this is that very often patients come to them somewhat
heavily medicated ...(because caring for someone at home seems to lead to
that).

They then add back medications as they see the need arise.   This was
explained to me when my mother in law was being admitted.   I was very
concerned about it and actually asked them not to do this, simply because I
knew how tormenting her delusions were which prompted their use in the first
place.  Finally I acquiesced, and figured they would soon enough see for
themselves that they were needed.  They did indeed reduce her meds even
more, and gradually withdrew them altogether.

Unfortunately I broke a shoulder during her last few months there, and we
were both so caught up in the whirlwind of surgeries and therapies dealing
with that, so as long as she seemed comfortable and happy (which she did) we
left the issue of meds up to them.   All we cared about was her well being
anyway.

To be perfectly blunt with you, having a person overly medicated is not in
the nursing homes best interest.   A patient who is more incontinent and has
to be fed by hand, who falls over easily, is more of a problem to the staff.
A person who is able to take some part in their own care is easier for them
to care for and they get paid the same amount to care for that person.
They are able to deal with some behavioral issues better than others.
Therefore it is in everyone's best interest to reduce meds as much as
possible.   Not every nursing home may be like this, but around here they
are (upstate NY).

As I explained before, there is often a curve.  The meds start out slow, are
often increased, then gradually decreased as their level of function
declines.   This was our experience, and I found out later that it is fairly
typical.
Signature


Best Regards,

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

>>> In my case, I came to my conclusion regarding the participants being
>>> "zombified" because the head nurse at the program actually told me that
[quoted text clipped - 48 lines]
>> depend on the type of dementia, as others have noted in this
>> thread.
Mary_Gordon@tvo.org - 13 Aug 2006 14:24 GMT
Torpedo, its not a matter of lying or telling the truth. What she gave
you was likely a personal bias and opinion that is HERS. She's not a
geriatric psychiatrist or a neurologist with a dementia specialty who
really knows the ins and outs of various options. No one medication is
the answer for everyone's intractable behavioural issues, and neither
is any medication Satan incarnate. Everyone's case is so different, so
you never say never - you keep your mind open and you try various
things and combinations of things to help manage problem behaviours -
and that includes changing the way the person is approached and dealt
with so as to prevent catastrophic reactions.

You can't treat any official as all-knowing guru. Its no different than
when I had my babies - I got some spectacularly stupid advice on
feeding from some maternity ward nurses who didn't know what they were
talking about - the advice they gave me was based on their personal
bias, not the most current medical knowledge. Lots of people in
positions of authority are not particularly knowledgable, when you'd
think they would be. Since I am by nature an information gatherer, we
found out early in the game, that hubbie and I were better informed
about AD than most of the doctors and nurses we encountered. When my
MIL broke a hip in mid AD, you would not have believed how dense most
of the orthopedic ward staff were - and they doubtless encountered
demented elderly all the time. Just totally clueless.

M
Dana Carpender - 12 Aug 2006 23:23 GMT
> In my case, I came to my conclusion regarding the participants being
> "zombified" because the head nurse at the program actually told me that
[quoted text clipped - 19 lines]
> point now where I'm going to have to make these decisions to guard my own
> health and sanity.

Torpedo, we've all been raised -- and women especially -- to put the
needs of others before our own.  If we do something for ourselves that
might be even a little bit at the expense of a loved one, we feel
guilty.  Witness all the parents who spend *all* their time driving
their children from pillar to post to participate in yet *another*
enrichment activity, and would feel guilty saying, "Hey, either soccer
*or* gymnastics, but not both, I need a break."

That's where you're at with your dad -- you feel bad doing something to
give you even a slightly bearable quality of life.  But you know what?
(And I don't say this to hurt you, but to help you see what none of us
want to look at.)  Your father isn't going to *have* much quality of
life anymore.  He just isn't.  Neither is my mom.  Sedated isn't great,
but neither is angry and paranoid and agitated.

Only *one* of you is *capable* of any really meaningful improvement in
your quality of life right now, and it's *YOU*.  And you know what?
You're not required to sacrifice *everything*.  You've got a right to
not run yourself to the point of a breakdown, and giving yourself that
break doesn't make you a bad person or a bad daughter.

(((((((((((Torpedo)))))))))))))

Dana
LuvMyMom - 13 Aug 2006 03:21 GMT
I'm sorry did I insult you personally in some way?

I thought this group was here for people to share personal experiences
and opinions in a free and supportive environment.

> > 4.  When I visited Nursing Homes so as to get on the list  - this
> > VACANT behaviour was the norm - not the exeption!  DRUGS be the cause
[quoted text clipped - 11 lines]
> email replies not necessary but to contact use;
> tumbleweednews at hotmail dot com
Tumbleweed - 13 Aug 2006 07:45 GMT
> I'm sorry did I insult you personally in some way?
>
> I thought this group was here for people to share personal experiences
> and opinions in a free and supportive environment.

...and my personal opinion was that you were talking rubbish when you said
there was that all that vacant behaviour was NO DOUBT caused by DRUGS, when
you have **no knowledge at all** of the people exhibiting those behaviours,
especially when vacant behaviour is norma in Azl( as is sleepiness in old
age, put teh two together, what do you get?). I'm not sure what you were
expecting, but you arent going to see a lot of people assiduously doing
multiple interesting crafts to pass the time.

I note in another post that you said that many people with vacant behaviour
were in earlier stages than your mother, yet were more listless. How do you
know they were in earlier stages? Did you decide they were, but that they
looked like they were in later stages because they were 'vacant' and
therefore they must have been on drugs?

Bear in mind with this awful disease, that unless someone is interacting
with you, you cant really be animated and have soemthing to say and be
interesting to watch, since you cant read, or do almost any pastime (lets
say crosswords, puzzles, knitting whatever) because the loss of memory means
you cant plan ahead and you cant even remember what you were meant to be
doing and you probably forgot what knitting or a jigsaw puzzle was anyway.
hence, vacant behviour tends to be the norm. Even for  'normal people' at
home we dont spend most of our time running around doing interesting
things.. Az removes your ability to do "most things", so all that leaves is
sitting down or maybe walking backwards and forwards (the two classes of
behaviour at my fathers home). There really isnt much else you can do with
Az once you are beyond a certain point, drugs arent needed to explain this!

I'm not saying drugs arent ever used, just that they arent needed to explain
the majority of Az patients listless behaviour. If you cant remember more
than 5 seconds ago, like my father, then just what would you expect him to
do that would make him look 'non listless' so you arent concerned? He cant
even try and plan to escape from the home like he did when he first went in.
Add to that, that at the sort of ages we are talking about, people spend
more time asleep anyway, my FIL who was perectly sane, spent about 50% of
his daytime asleep I would guess.

Finally, in another post you said that many people noted a decline in
behaviour once people entered care. Well, sure it could be drugs though
anecdotally here many people report that their LOs were taken off drugs when
they entered care in order to be baselined and this actually caused a
problem by itself. But think about it, the reason they entered the home is
that they got to a point where they could no longer be coped with. That, in
many cases, meant that they had started on a decline, thats why they could
no longer be coped with. What you are seeing perhaps, is that decline
continuing, hence no surprise that there is a decline *after* they entered
the home, because there was a decline *before* they entered the home as
well. Not to mention the 'oooh hasnt he grown' effect, eg if you see someone
everyday, you dont notice subtle changes, see them every few weeks, and you
do.

Signature

Tumbleweed

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

LuvMyMom - 14 Aug 2006 03:58 GMT
> > I'm sorry did I insult you personally in some way?
> >
> > I thought this group was here for people to share personal experiences
> > and opinions in a free and supportive environment.
>
> ...and my personal opinion was that you were talking rubbish when you said

I'm not sure what I have done to insult you so.

I'm not here to try and win an argument just share my own opinions - I
hope I can continue to do so with out being personally attacked.
Dennis P. Harris - 14 Aug 2006 04:21 GMT
> I'm not here to try and win an argument just share my own opinions - I
> hope I can continue to do so with out being personally attacked.

if you continue to share opinions that are obviously based on
your misunderstanding what you see, you can expect that others
will point out your error.

it's usenet, where opinions are usually examined exhaustively.
get used to it.
Evelyn Ruut - 12 Aug 2006 13:27 GMT
>I wrote my lenghty, extremely lengthy, post before I read all of the
> other responses
[quoted text clipped - 26 lines]
> any length of time and NO SENSE of contentment - just a complete loss
> of self.

Hi Suzanne,

I respectfully beg to disagree with just a bit of what you said above.

Risperdol made my mother in law a happier person, and more comfortable in
her own skin.   She was one who was TORTURED by her delusions!   Risperdol
brought them under control.   It isn't a "bad" drug, but I admit that it
could be used incorrectly, or overdosed on.

By the time she was admitted to the nursing home in later stages, we
discontinued its use gradually because she needed it less.   I would explain
that there was a sort of a curve.   We started smaller dosage wise,
increased it, then slowly decreased it, based on her needs.

To be perfectly clear, I will admit that it would be awful for people to be
put on this drug without serious and careful observation and understanding
of the need for it, or the lack of need.   I am sure there ARE places and
persons that abuse these kinds of drugs.

For us, that drug was a godsend, and without it my mother in law would have
been in a facility way too early.  She would have missed a great deal of
life and we would have missed a great deal of her.

I am glad that people can see your opinion as well as mine, but in the
interest of the peace and fairness to the families dealing with these
ethical issues, I think the use of medications like this should be decided
between the doctor and the family according to individual necessity.   It
isn't a bad drug, but like any other, it can be used incorrectly.   Each
situation should be judged individually.

It is also important that people should realize that with or without drugs,
persons with alzheimers, will very often come to a place where they do get
very listless and sleepy and uninterested and unresponsive to much going on
around them.   In later stage they sleep almost all the time.

I am glad you were able to deal with your mom's difficulties without needing
anti-psychotic meds.  But then you didn't have to deal with the same person
we did.   We really had no other choice, excepting to maybe use some sort of
physical restraints, and that would have been really horrible in my opinion.

Signature

Best Regards,

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

Mary_Gordon@tvo.org - 13 Aug 2006 11:32 GMT
Suzanne, I live in Ontario, and when my MIL went through her journey
(in the 1990's), there were essentially no Alzheimer's drugs available
here, other than tranquilizers, which, thankfully, she only needed on
one or two occasions the entire way.

We were very fortunate with her, as she did not undergo much in the way
of personality change. She just got vaguer and vaguer - she was always
very gentle and shy, and if anything, the Alzheimer's made her less
aggressive, if that was even possible - LOL! She did have some
delusions, but few of them were very distressing to her (i.e. she
thought people on TV could talk to her and see her). I've answered
Alzheimer's questions for allexperts.com for many years now - so I've
had conversations with more than 400 families who have loved ones with
AD and other dementias, and I know that we were just darned lucky on
the difficult behaviour front. She did lots of strange things, but
nothing that was really a huge problem in terms of her care, or safety
and distress for her or others.

A lot of families go through very, very difficult experiences with
their loved one with paranoia, anger, upsetting delusions,
hallucinations, agitation, sleeplessness, wandering, and physical
acting out that can include violence like throwing things, hitting,
pushing, yelling. Sometimes these behaviours can be managed without
drugs, sometimes NOT (i.e. loved ones and caregivers try everything
they can think of and nothing helps). We have family friends whose
formerly very gentle husband (a very large man) had to be placed in the
pre-respiridol days because of his anger and violence - this happened
at home with his wife who tried everything and was at her wit's end
with him. He became very unpredictable - kinda like a toddler who will
wallop at random. It was just plain dangerous for her and broke her
heart. I also recall the teeny Scottish school teacher (probably
weighed 80 lb) in my MIL's locked AD ward who used to scream swear
words, accuse staff of trying to poison her, and throw chairs and other
items at people (she was just wild when she got going, which would have
been funny if she hadn't been with a lot of frail people she had real
potential to hurt).

So if things are running smooth at your place, thank your lucky stars,
and have some compassion for others whose loved one is more
challenging. The point of the medications is to improve quality of life
- and for many people, no drugs results in earlier placements in
facilities because their families can't cope, or it means they get
kicked out of facilities because their violence or other issues can't
be dealt with safely.

When my MIL got to the point where she needed the locked facility, she
went to Chester Village in Toronto, which was then one of the few
places that had a specialized AD unit with activities designed just for
AD patients. It was great in terms of the care, the staff, and the
creative ideas for activities and programs they came up with.

Residents participated in many things, and those who were still higher
functioning did seem to enjoy themselves (and yes, music was something
many really participated in and seemed to get pleasure from). Very few
of them were on Alzheimer's or psychiatric drugs because there were
almost none available at the time. The unit almost never used
tranquilizers. My MIL got into a spin one time with agitation, and they
called us and asked for permission to give her a dose of something - no
one was routinely drugging anyone in there.

However, yes, many of them were very vacant. Its a function of the
disease. Its called "flattening of affect" - the range of emotions they
express becomes less and less in terms of happiness, interest etc. Some
of them also had Parkinson's issues and had "frozen" faces. Many of
them just didn't participate in anything - they just sat in the lounge,
ignoring the activities going on right in the same room, or shuffling
endlessly around the halls. Some of them ranted endlessly to no one,
some said nothing unless they were spoken to, and then only a yes or
no. My MIL lost her ability to talk two years before she died - those
last two years all you got from her was garble, with the odd
intelligible phrase thrown in, but she couldn't understand or answer
questions. She essentially withdrew inward, and stopped participating
in much of anything, no matter how interesting or stimulating what was
going on around her was. She just lost interest in everything -
although that doesn't adequately describe it. It wasn't just losing
interest - she just had no clue what was going on - she was just
disengaged from everything by brain damage. Just to give you an
example, we went to a special Christmas party with her, and we'd
brought a nice new robe for her in a wrapped box. She didn't know it
was Christmas. She didn't understand what was going on. She paid no
attention to the activities. When given the present, she didn't know
what it was or that she should unwrap it, or be excited or happy about
a gift (she'd formerly been a big fan of holidays). When we "helped"
her unwrap it, she showed no interest in the robe - she didn't know
what it was, that it was for her, or give any indication that it was
soft or a pretty colour or anything. Just pretty much vacant in terms
of reaction, engagement, interest, initiative etc.

When she stopped being able to walk, she finally had to go to the
nursing ward, and that floor was even more depressing - because the
entire population was pretty much end stage dementia patients who spent
their days sitting or propped up in bed, drowsing. Again, it was the
disease, not the way they were treated, and nothing to do with meds.

Mary
meg - 12 Aug 2006 18:01 GMT
I just don't see what the point is of doping
> people up so they can go and enjoy their day at daycare  ....and shouldn't
> the Staff at this facility have the skills to handle what their head nurse
[quoted text clipped - 4 lines]
> me about this drug?  How it works, how long it lasts and whether or not
> there are side effects?

Torpedo,

My Mom, who is in the late middle stages of alzheimer's, was placed on
seroquel for nightmares and delusions.  We didn't notice a big
difference, and when her doctor increased the dose it made my mother
very tired and sleepy.  Consequently, her doc. put her on a combination
of a 1/2 dose of seroquel and zoloft for depression.  That combo has
made a fantastic difference for my mother and our family.

My mother calls zoloft the "happy" pill.  She told me that before
zoloft she felt so scared all the time, now things are OK.     I am
happy to have mom on the medication.  Her behavior at the memory care
where she is living was getting out of hand.  She was angry all the
time and hated her life.  She also was becoming very obsessive, so that
even the most skilled caregiver could not distract her from her
obsessions which caused the difficult behaviors.

Unlike you, I think medication that helps Mom cope with this horrible
disease, and consequently which helps with behavior, is a blessing.  I
hated seeing my mother so anguished that she would behave in ways that
would horrify her if she were in her right mind.  Also, she is not a
zombie or drugged out.  She is just more calm, happier, and able to
derive some pleasure from life again.
LuvMyMom - 13 Aug 2006 03:37 GMT
http://www.newstarget.com/004951.html

clipped

"Highlight:
An antipsychotic drug prescribed for almost half of all Alzheimer's
patients in Britain can actually worsen symptoms of the disease,
according to a study conducted by the Institute of Psychiatry.
...
An antipsychotic drug frequently given to Alzheimer's patients actually
worsens their illness, researchers say.

...
Patients given AstraZeneca Seroquel had a marked deterioration of
memory and other higher brain functions compared to those on placebo,
according to Professor Clive Ballard of the Institute of Psychiatry and
colleagues.

etc. etc.
meg - 14 Aug 2006 20:15 GMT
> Patients given AstraZeneca Seroquel had a marked deterioration of
> memory and other higher brain functions compared to those on placebo,
> according to Professor Clive Ballard of the Institute of Psychiatry and
> colleagues.

Yes, I've done lots of internet searches on Seroquel.  I am well aware
of the side effects and studies demonstrating poor outcomes  for people
with dementia.  However, Aricept also does not have great outcomes
either, but it seems to have worked for my mother.

My mother is 86.  Her life expectancy is about a year more because of
heart disease.  I think it would be a cruel act to take her off
medication that I have seen improve her life dramatically.

As I mentioned, prior to the zoloft/seroquel combo my mother was afraid
and anguished.  Now she is more like her old self, a little more
independent and not so worn down by fear and anxiety.  She is able to
enjoy our time together, she laughs, makes jokes, tolerates her memory
care facility, and even enjoys some of the activities.  She may be
more confused. We don't know if it's  due to the natural progression of
the disease and in combination with other health issues (mild stroke
and heart disease decreasing oxygen to her brain) or the medication.
None the less my family has decided it is a greater kindness for her to
be at peace and a little more confused, than slightly less confused,
but tormented by delusions and fear.
Tumbleweed - 14 Aug 2006 20:20 GMT
>> Patients given AstraZeneca Seroquel had a marked deterioration of
>> memory and other higher brain functions compared to those on placebo,
[quoted text clipped - 21 lines]
> be at peace and a little more confused, than slightly less confused,
> but tormented by delusions and fear.

Got to agree, there is a poor woman at my fathers facility who walks around
muttering and if you speak to her (she is less slucid than she used to be)
you can see she is in a constant state of anxiety&worry. I cant imagine
anyone in their right mind would want to get an extra 5 minutes of life in
that state. I'd trade 5 minutes of non anxiety against 100 years of that.

Signature

Tumbleweed

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

Evelyn Ruut - 14 Aug 2006 20:58 GMT
>>> Patients given AstraZeneca Seroquel had a marked deterioration of
>>> memory and other higher brain functions compared to those on placebo,
[quoted text clipped - 28 lines]
> life in that state. I'd trade 5 minutes of non anxiety against 100 years
> of that.

I agree with you 100%!!!!!

The prejudice against "using drugs" has crept into our lives so much that
there are those who are afraid to use medications even to give a last bit of
peace to a frail sick elderly person with an organic brain disease!