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Songbird - 27 Aug 2004 03:28 GMT

Hello, all.

We have a working diagnosis on Mom of vascular dementia. The PT scan (no MRI
because she has a pacemaker) shows not enough blood reaching the brain, esp.
on the left side. Ultrasounds of the carotids are clear, though. The doctor
explained to her how this disease (she still has avoided saying to Mom the
word dementia -- "the vascular condition that is causing your memory loss")
can progress compared to Alz. She has offered her Alz meds, saying they seem
to help in all forms of memory loss. Mom declined, saying she feels she is
managing OK as long as either Dad or I is with her. She is already taking
seven meds, ranging from glipizide to coumadin, and I think she is just
weary of the interactions and side effects.

The doctor said there is no hard evidence that these meds must be given
early on. She explained how there may be an improvement and a slowing down
of the progression by 6 to 12 months, but says there is no reason why she
can't wait and start the drugs later if she wants to "or if the people
around you think you should."

She goes back to see doc in three months. Do I push for the meds? Or leave
well enough alone? She is oriented to place and people, though times and
dates give her trouble. She can't remember how to cook without a recipe and
has given up driving. She can't remember what came in the mail today or what
you talked about yesterday -- but sometimes she does.

What do you folks think? If she should, how can I help her see the need? I
could insist, and she would do it "for me," but she can still follow
reasoning 95 percent of the time and it would be easier for my Dad if she
had at least agreed once (even if she forgot she agreed!).

Songbird

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Tumbleweed - 27 Aug 2004 08:15 GMT

> Hello, all.
>
[quoted text clipped - 27 lines]
>
> Songbird

I disagree with the docs opinion about evidence that you should take the
meds early on. In most cases, AFAIK, when you lose brain function, you dont
regain it again. Also, if the loss is small, its easier for the meds to
restore it than if the loss is large. Both good reasons for trying, IMHO.
Aricept and namenda, by and large, seem to have few side effects, and those
that are reported, not severe, so trying it seems to be a relatively safe
option to me. Why not try it for a month and see what happens? If she gets
much worse, to the stage where you desperately want her to try, it may be
too late.

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Tumbleweed

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Evelyn Ruut - 27 Aug 2004 12:45 GMT

> > Hello, all.
> >
[quoted text clipped - 44 lines]
> much worse, to the stage where you desperately want her to try, it may be
> too late.

Hi Songbird,

Tumbleweed is absolutely right in what he says.

As I understand it there IS good evidence that if taken early, it can slow
the progression of the illness. I think the doctor may not be correct in
saying what he said.

At any rate, the Aricept is a very small pill and it is coated, and it goes
down very easily. In the beginning there may (or may not be be) some
gastric upset, but it does go away in time.

We saw such a noticeable difference in the way Ida functioned with the
Aricept, that it was certainly of help in her case. They started her with
5 mg and then went to 10 which she stayed at till the present.

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Regards,
Evelyn

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

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Gwen Love - 27 Aug 2004 18:29 GMT

Grayson had a slight bit of nausea from Aricept for the first two weeks;
after that no side effects at all.
Gwen

> > > Hello, all.
> > >
[quoted text clipped - 70 lines]
> Aricept, that it was certainly of help in her case. They started her with
> 5 mg and then went to 10 which she stayed at till the present.

Reply to this Message

Dennis White - 27 Aug 2004 08:24 GMT

snip...

> What do you folks think? If she should, how can I help her see the need? I
> could insist, and she would do it "for me," but she can still follow
> reasoning 95 percent of the time and it would be easier for my Dad if she
> had at least agreed once (even if she forgot she agreed!).
>
> Songbird

Even with the additional meds that you mention your mothers condition
will not be reversed...*maybe* slowed down at best. You mention that she
might just be weary of the meds she already has to face on a daily basis.
My personal opinion is that you should occasionally advise her of any
benefits of the meds the Doctor has explained to you, and leave it at that.
Do not hound her or beg her, or cause her to feel guilt ( "can you do it
just for me?"). If she can follow reasoning 95% of the time you must accept
that she has her own reasons for not wanting certain medications. Getting
her to agree just once to OK more meds, and then her forgetting it, or going
back to her initial desires seems like a disingenuous way to force
medication against her wishes. Especially when it is unsure what the
outcome of her taking the additional meds will be.

Dennis

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Mare - 28 Aug 2004 01:14 GMT

Hi Dennis,
I've got a couple of curiosity questions for you. Have you dealt
with many people with AD/dementia? Has Evan actually been
diagnosed
with AD? Have you read "The 36 hour Day? I'm just trying to get a
handle on some of your recent responses before I either disagree
with some of your statements or point out why(from experience)
things aren't as idealistic as you seem to believe.

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Mare
mfcoleman@THEOLEmindspring.com
http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm
alt.support.alzheimers' FAQs and Stuff Pages

> snip...
>
[quoted text clipped - 19 lines]
>
> Dennis

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Dennis White - 28 Aug 2004 03:34 GMT

> Hi Dennis,
> I've got a couple of curiosity questions for you. Have you dealt
> with many people with AD/dementia?

Yes. My grandmother. My Great Aunt. My mother. My sister.

Has Evan actually been

> diagnosed
> with AD?

No. He has ATI's with BiPolar Disorder.

Have you read "The 36 hour Day?

Yes.

I'm just trying to get a

> handle on some of your recent responses before I either disagree
> with some of your statements or point out why(from experience)
> things aren't as idealistic as you seem to believe.

I wouldn't call my outlook idealistic. Probably since my mother and my
sister suffered from dementia at such early ages my outlook is quite
different than others. All of those I mention above had dementia induced by
Huntington's Disease which is, quite apart from the dementia a very horrible
and difficult disease to deal with. I will also admit to having quite an
unconventional view on how we must respect the wishes and dignity of others
above our love for them and desire to keep them alive at all cost. My mothe
and sister especially were made to live in absolute fear and misery simply
to prolong their lives.
My personal experience has led me to believe it is far better (for me)
to let a loved one pass away sooner than prolonging their misery just
because I am afraid to let them go. Some meds will gain a loved one 6-12
months at the "front end", but the final phase still remains as painful for
them and me. I am quite willing to admit this is my own personal view.
There is no need to argue it, since it *is* only my view.
BTW, I had to admit Evan to a nursing home (Dr's orders) after
returning home for the weekend after a bout with aspiration pneumonia. Doc
could only find one bed available at a facility that was so substandard as
to be frightening. I spent a week looking for a much better facility.
Meanwhile Evan dehydrated, would/could not eat and the staff did nothing to
encourage him or supplement his intake. He lost 12 pounds in 9 days.
Finally today I got him moved into a very good Facility. In fact, the most
accomodating, most beautiful and professionally staffed I have ever seen.
Luxurious too. And it cost a fortune! But Evan has the resources.
He and his (deceased) wife scrimped and saved and went without, as
many of his generation did (he's 87). As a consequence he has amassed a
tidy sum of money investments and real estate. Much more than he will need
even if he lives another 10 years. As POA I will try to make sure to spend
as much as I can on his care. I only wish others could be in the same
position. Better still,. I wish all sufferers could recieve the same kind
of high-quality loving care when they need to be outside of our homes
without any regard to money.
I know that his heirs (who have never taken a bit of interest in him)
are frantic about the amount of money I am willing to spend on his care.
They are not aware of the extent of his resources, I'm not about to tell
them, and I'm sure they imagine their inheritence melting away before their
very eyes. Hopefully the resources will run out exactly the day he
dies....although I seriously doubt he will outlive the money.
I have been taking care of him in his own home for the past four
years. It is now going to be impractical for him to return there. He knows
that the plan is for him to regain his strength and move on to a very
wonderful Adult Family Care facility. He doesn't seem a bit upset about it.
I know him well enough to see the transition will probably go fairly
smoothly. But I'm afraid it will be quite a shock for me. The facility is
about 15 miles away. I'll be able to visit every day, but I've gotten so
used to taking care of him and he has always been so easy to care
for...unlike my mother and sister were. Last night he said to me "Thankyou
for being there with me for every step of the way. Even the bad steps" I
cried a little bit.

Dennis

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Mare - 29 Aug 2004 02:53 GMT

Hi Dennis,

> > Hi Dennis,
> > I've got a couple of curiosity questions for you. Have you dealt
[quoted text clipped - 26 lines]
> and sister especially were made to live in absolute fear and misery simply
> to prolong their lives.

I'm sorry to hear about your family members. I don't know much
about Huntington's but what little I know is terrifying. I do
think however that most here also respect the wishes and dignity
of others and not many(if any) want to keep LO's alive by
any and all means possible. If you go back and read the Google
archives
you will see many posts where people struggle with decisions
because they want them to be what their LO would want not what
the caregiver would want. And lots of posts stating why prolong
the suffering. We are not so different.

> My personal experience has led me to believe it is far better (for me)
> to let a loved one pass away sooner than prolonging their misery just
> because I am afraid to let them go. Some meds will gain a loved one 6-12
> months at the "front end", but the final phase still remains as painful for
> them and me. I am quite willing to admit this is my own personal view.
> There is no need to argue it, since it *is* only my view.

I do not believe in prolonging misery either but if a person is
going
to have AD for 3 to 20 years why not make as many of those years
as self
suffient as possible? We can not control when they move onto the
next stage or pass away, I wonder these days why my Mom is still
holding on, and no one wants the final awful, painful end stages.
But since there isn't anything we can do about it why not make
the years the best possible? AD IS a long term disease and there
are some promising therapies in the works. Would you want to let
your LO go so downhill that none of those therapies would work?
Would you rather that they have more of themselves for as long as
possible or would you like them to last years at a more
diminished
level? I'm not happy my Mom has lasted to the ugly late stages
but
since she has I'd rather she is smiling at me rather than being
totally non responsive as some I've seen in her NH. No
"argument" just discussion.

> BTW, I had to admit Evan to a nursing home (Dr's orders) after
> returning home for the weekend after a bout with aspiration pneumonia. Doc
[quoted text clipped - 5 lines]
> accomodating, most beautiful and professionally staffed I have ever seen.
> Luxurious too. And it cost a fortune! But Evan has the resources.

I'm glad to hear this. When you said their first remedy for
sleeplessness was drugs it scared me.

snip

I'm glad he has resources to care for himself and I'm glad he has
you.

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Dennis White - 29 Aug 2004 05:01 GMT

> I'm sorry to hear about your family members. I don't know much
> about Huntington's but what little I know is terrifying. I do
[quoted text clipped - 6 lines]
> the caregiver would want. And lots of posts stating why prolong
> the suffering. We are not so different.

Oh! I did not mean to imply that anyone here is crass enough to watch thier
LO's suffer without making painful decisions. I *do* think that the medical
establishment, until very recently, have perpetuated the idea that we must
keep others alive at all costs. At any rate, the painful decisions we must
make on behalf of our LO's would be so much easier (whether we face
AD,dementia, or an automobile accident) if we all went out of our way Monday
morning to begin preparing a Living Will.

> > My personal experience has led me to believe it is far
> better (for me)
[quoted text clipped - 15 lines]
> next stage or pass away, I wonder these days why my Mom is still
> holding on, and no one wants the final awful, painful end stages.

I don't disagree with those who try to prolong quality of life in the early
to mid stages of AD or other dementias. I would hope that the hard
decisions about medication etc. could be made in advance by each of us (see
above) so we can guide our families and caregivers. But I do have some
personal problems when the LO is far advanced in the disease ands obviously
confused suffering and frightened.

> But since there isn't anything we can do about it why not make
> the years the best possible? AD IS a long term disease and there
> are some promising therapies in the works. Would you want to let
> your LO go so downhill that none of those therapies would work?

No. But I wouldn't want to see a succession of failed therapies that cause
so many side-effects as to make the LO just as sick from meds as from AD.
On the other hand, I *do* believe there are promising therapies in the
works, but I am not convinced any of them will reverse the devestation our
LO's have already suffered.

> Would you rather that they have more of themselves for as long as
> possible or would you like them to last years at a more
[quoted text clipped - 3 lines]
> since she has I'd rather she is smiling at me rather than being
> totally non responsive as some I've seen in her NH.

Well, I can't and won't argue with you there! My philosophy is simply
that we should help sufferers live quality not quantity. You make my point
by telling us how wonderful it is to see your mother smiling instead of
living as an unresponsive shell. I'm not advocating withholding medication.
I am simply sasying I believe quality of life is far more important than
length of life.
By the way, my mother who suffered greatly from HD was one of the
happiest, most thankful, most loving people I have ever known-and I don't
say that simply because all of us love our mothers. I mean the above in
respect to how she saw the world and treated others. I am sure her outlook
was due to accepting the reality of her illness at an early stage. As her
dementia incread and her personality disolved it was a comfort to know that
the "real" her had been so happy. Still, no medication could bring her back
from her disease. One day, and I fear it will be far more distant than we
wish, people with horrible diseases may be cured. Until then I think we can
only offer therapies to alleviate their suffering.

No

> "argument" just discussion.

I understand.

> > BTW, I had to admit Evan to a nursing home (Dr's orders)
> after
[quoted text clipped - 17 lines]
> I'm glad to hear this. When you said their first remedy for
> sleeplessness was drugs it scared me.

It didn't scare me too much because I knew I simply would not allow it! I
was disapointed that they would take this approach to others that had no one
ther to advocate for them, though. But I did know at that point that I'd
better get him moved.

> snip
>
> I'm glad he has resources to care for himself and I'm glad he has
> you.

I am glad I have had him too. I only wish everyone with a debiltating
illness had the kind of love you and I and others here can give. I am so
dissapointed that we as a society have failed so many others in the standard
of their health care. Thanks for letting me rant. I know that I have alot
of unconventional attitudes and I don't mean to offend anyone.

Dennis

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Mare - 28 Aug 2004 01:14 GMT

Hi Songbird,
I'm of 2 minds about this. This was my thinking deciding for my
Mom: The earlier you start the meds the more activities of daily
living you preserve and who knows what might be around the
corner(med/treatment wise)
to preserve more. Or just adding another med later(this wasn't
known when I was making this decision) to improve or hold on to a
certain level of functioning. I still hold hope for those with
earlier stage LO's that the vaccine or the shunt will show lots
of promise.

On the other side of watching my Mom first thru Cognex(which I
think isn't made anymore), she was very paranoid, skittish and
angry so it was stopped and she was confused but not the
other things. Much later we started her on Exelon, she was
already stage 6 by then, and the side effects were terrible. We
had to make sure she had a full meal in her stomach before she
took a dose, but we noticed lots of improvement. I had read that
you really need to be willing to try the drugs for at least 3
months before deciding the side effects are to much. It takes
that long for some people to settle in as it were. I still
believe that is true since it is mostly what I've heard others
experience. My Mom's side effects lessened after about 2 months
and the improvements continued but we waited another month til we
upped her dose. We saw more side effects but not as severe and we
continued to see improvement. She did settle in to that dose as
well but she improved so much that she was back to being acutely
aware of her deficits and we could not bear to watch her be so
upset. She was at a good level of activities of daily living for
us to care for her at home. Even thru all this I think it was
worth it since she now at very late stage 7 gives me smiles and
yaks alot. To many others in her NH have been non reactive since
my mom moved into the NH 3.5 years ago.

So I guess I'm saying the chance of preserving more of your Mom
earlier in the game is preferable but the side effects can be
really awful for some people and you/she should commit to the 3
month timeframe to fully evaluate the effectiveness and see if
any side effects calm down. I am still just a hopeful person
about something better coming along soon and I'd rather have my
LO at an earlier place when it happens.

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Mare
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> Hello, all.
>
[quoted text clipped - 27 lines]
>
> Songbird

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Songbird - 28 Aug 2004 03:51 GMT

> Hi Songbird,
> I'm of 2 minds about this. This was my thinking deciding for my
> Mom: The earlier you start the meds the more activities of daily
> living you preserve and who knows what might be around the
> corner(med/treatment wise)

I can't help but think if part of this is because of all the heart problems,
hypertension, diabetes, etc., Mom has and if she just thinks why be
cognizant? It's too much work. (Being slightly fuzzy is not always
unpleasant.) If others will take care of me -- let them. She's always been a
fairly passive person (but then my father has a very strong personality and
it's her way of making life smoother!). I don't think she's depressed. She
was surprised Wednesday when the doc advised that she get a new MedAlert
bracelet -- the one she has is for Coumadin and synthroid, and the doc said
the diabetes is much more important than the synthroid (and i wonder if I
can cram memory loss on there too!). She doesn't seem to have a clear grasp
of her medical situation, but it's more from years of going along rather
than not comprehending. I'm going to spend a chunk of time with her tomorrow
doing the mother-daughter thing, and we'll see if I can get any insight into
where she is. Both of my parents are the type you reason with like drops of
water on a stone and then let them decide it was their idea.

Thanks for all your input. I'll also attack this from the doctor's end.
Anyone have citations on studies, etc.?

Songbird

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Mare - 29 Aug 2004 02:53 GMT

Hi Songbird,
It's such a hard decision especially with the real concern about
side effects. You won't know about them til they are tried but
you can also start them later. Are there other more pressing
issues to deal with and try this later on? Remember to pick your
battles!

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Mare
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> > Hi Songbird,
> > I'm of 2 minds about this. This was my thinking deciding for my
[quoted text clipped - 22 lines]
>
> Songbird

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Songbird - 29 Aug 2004 18:30 GMT

> Hi Songbird,
> It's such a hard decision especially with the real concern about
> side effects. You won't know about them til they are tried but
> you can also start them later. Are there other more pressing
> issues to deal with and try this later on? Remember to pick your
> battles!

Actually, you're right, Mare. The next battle is getting diabetes sorted out
on both parents. Mom has just started testing and her fasting blood sugars
are in the 180-190 range. That's enough to be contributing to the confusion.

Dad's are 200-plus. Yesterday we took him to the ER because he had severe
abdominal cramping and had diarrhea all night. His blood sugar was 238, and
he was dehydrated. Mom ended up sitting in the ER waiting room for 8-plus
hours while we got him sorted out. The exam room was very small, and she
insisted on "not being in the way." I offered to have my husband take hr
home or come sit with her when it became obvious we would be there a while
for multiple CT scans. She just sat quietly int he waiting room and smiled
at the various kids coming through. I ran back forth between the ER (in a
secured area) and her. The personnel became quite familiar with my presence!

Songbird

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Mare - 31 Aug 2004 02:41 GMT

> > Hi Songbird,
> > It's such a hard decision especially with the real concern about
[quoted text clipped - 17 lines]
>
> Songbird

Yup, Diabetes is more immediate IMO.

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