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

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I'm new here and my father has Alzheimers

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Jane Again - 23 Jun 2004 04:06 GMT
Hello

My name is Jane and my father is Larry.  He'll be 71 years old June 30th.
He was diagnosed with Alzheimer's 13 months ago.  My father had been pretty
forgetful for most of our lives so when he was diagnosed us kids, 21, 38,
41, 43, if you can consider us kids, were shocked.  Anyway, dad was put on
medication and the first 11 months were pretty uneventful.  Dad repeated
himself alot, but that wasn't unusual for us.  We did notice that he was
more aggressive but we liked it, my dad was waaayyy to laid back and was
stepped on a lot by people, to see him put his foot down and not take any
crap was great.

Well my dad has other health issues along with Alzheimer's, he also is a
diabetic, and that has caused other issues, like congestive heart disease
(diagnosed in April)  He had a double bypass.  Since his heart surgery, his
Alzheimer's has progressed rapidly.  In two months time, dad had gone from
still working 40 hours a week to living in a nursing home.  He had gotten
athletes foot in the hospital (transitional care facility) and because of
his diabetes the sores didn't heal and became infected to the point he had
to have all the dead tissue surgically removed and was hospitalized again.
It was between the two smaller toes on one foot.  He had cut his left foot
and that isn't healing either.  Due to the diabetes his arteries have
deteriated horribly in his legs and he has no circulation below his shins.
Today we found out the arteries are beyond help, stints can not be placed in
his legs to improve the circulation, so he will have to undergo amputation
of both legs, just below the knees, as his feet are now turning black, and
smell awful.  This has been very hard on my step mom of 30 years and my
oldest sister, who is really like a mom to the rest of us.  My step mother
has a genetic heart disease that is incurable and has gone under the knife
so many times I can't even count.  She now lives with 18 stints in her
arteries on her heart, and can not have one more placed.  So her next attack
will probably be her last.  She is 20 years younger then my father.  There
that should be enough health history to tell you what's going on in our
house.

My dad has had some extreme type of hallucinations, I.e. he told my sister
he "couldn't put his feet on the floor because of all the blood on the floor
from the gang wars."  My sister just smiled at him and said, "Dad I think
you should not be watching so many violent DVD's."  Dad just smiled back.
My dad loves Sci-Fi.  We bought him a little TV for his room with a built in
DVD player, he loves to watch TV.  He woke up scared and it took him
probably an hour to figure out where he was, and he actually said, "ok I
remember now, I'm ok."  He also will not sleep in a bed, we had to bring his
lazy boy to the nursing home for him to sleep in and made them take the bed
out.  At times he seems to be resigned to what is happening to him and
around him.  I feel horribly guilty that he's not living with one of us, but
I also understand the 24 hour supervision that is needed, and my whole
family works.  None of us can afford to quit our jobs to take care of him
full time.  We take turns nightly visiting him for several hours at the
nursing home, but everytime I have to leave to go home I feel horrible
leaving him there.  He doesn't complain and the nurses and care providers
are so sweet to him and flirt with him, and just love him, but I still feel
guilty.  I live the furthest way, so I see him the least, my step mom and
little brother is only about 7 blocks away so she is there daily, my sister
lives about 7 miles away so she is there every other night and my brother is
about 10 miles away and he is there about 4 times a week, so he has one of
us there everyday.  That is reassuring to me, but how does one make the
guilt stop?

Anyway, I know this becomes progressively worse, my sister and I have tried
to prepare ourselves for this, my step mother and brothers are both in
denial and refuse to believe that this is happening.  They see it happening
but it seems to be hitting them so much harder then my sister and I.  I just
don't understand how two months ago he was relatively normal to so darn sick
and falling apart physically and mentally now.  Anyway I'll be lurking and
reading I just wanted to introduce myself.

Jane A
Dennis P. Harris - 23 Jun 2004 05:59 GMT
> I feel horribly guilty that he's not living with one of us, but
> I also understand the 24 hour supervision that is needed, and my whole
> family works.  None of us can afford to quit our jobs to take care of him
> full time.  We take turns nightly visiting him for several hours at the
> nursing home, but everytime I have to leave to go home I feel horrible
> leaving him there.  

DO. NOT. FEEL. GUILTY.

Guilt is NOT allowed here!  Seriously, consider that he is being
kept safe and as comfortable as he can, and that when you folks
spend time with him, it's quality time because you're not
stressed out from taking care of him at home.  None of you can do
what professionals can, 24x7.
Jane Again - 23 Jun 2004 19:39 GMT
>> I feel horribly guilty that he's not living with one of us, but
>> I also understand the 24 hour supervision that is needed, and my whole
[quoted text clipped - 10 lines]
>stressed out from taking care of him at home.  None of you can do
>what professionals can, 24x7.

Thank you Dennis and you are right I should not feel guilty and
honestly I try not to.  I tell myself he has much better care there
then he would at home with us.  I guess what bothers me is, well it's
a little personal, but for five years Dad took care of us as a single
parent before getting remarried.  His wife, my mom, walked out on us
when we were very little and left him with three children to raise on
his own.  He did one heck of a job as a mother and father.  I just
wanted to return the favor, it was my goal my whole life to make sure
my father never lived in a nursing home, and some how I feel like I
failed him in this.  

When he was first diagnosed with Alzheimer's, prior to me knowing
anything about it, I still planned on having him move in when he was
ready.  The more I read and the more I talked to people, the more I
realized that this wouldn't be possible due to his own safety.  So all
those promises I made to myself I have to break.

I read in one of the posts earlier, is this for your "person with
Alzheimer's" or for your self?   I guess this is for me.

Jane A
Dennis P. Harris - 23 Jun 2004 06:06 GMT
> Anyway, I know this becomes progressively worse, my sister and I have tried
> to prepare ourselves for this, my step mother and brothers are both in
> denial and refuse to believe that this is happening.  They see it happening
> but it seems to be hitting them so much harder then my sister and I.  I just
> don't understand how two months ago he was relatively normal to so darn sick
> and falling apart physically and mentally now.  

2 things have accelerated the AD:  the physical illness (other
than brain damage from the AD) and the anesthesia.  Time and time
again, familes of AD patients have seen precipitous declines in
memory and cognitive function after surgery that involved general
anesthesia.  

Once he has the amputations, you can expect another decline, and
you might want to consider whether it might not be better to
simply give him enough painkillers to keep him comfortable and
let the circulatory problems and gangrene take their course.  

If the surgery prolongs his life, and he's vegetative, what good
does that do anyone?  What were his wishes in this regard?  Did
he have a Living Will or other advance directives?

It sound to me like it's time for you to call your local hospice
organization, in part because they will help you get ready for
the inevitable, and in part to help your relatives deal with
their denial.
Jane Again - 23 Jun 2004 19:51 GMT
>> Anyway, I know this becomes progressively worse, my sister and I have tried
>> to prepare ourselves for this, my step mother and brothers are both in
[quoted text clipped - 13 lines]
>simply give him enough painkillers to keep him comfortable and
>let the circulatory problems and gangrene take their course.  

I here you, but it is so much easier said then done. As far as pain
goes, he doesn't have much, that's how his foot/toes got to be so bad
before anyone figured it out.  The diabetes has damaged the nerves and
vessels to the point of feeling nothing anymore.   I may have painted
a much worse scene then what is right now, my father only has bouts of
Alzheimer's right now, if that makes any sense.  I mean he is
completely lucid, understands that he will have his legs amputated and
is meeting with his doctors today at the doctors office to discuss how
much is being removed.  He wasn't depressed, yet he seems tired.  He's
coherent, speaks well, has gained some weight from all the nursing
home food, with less activity due to his feet and legs, he's not
getting a lot of exercise.  He is able to call us on the telephone
still, we made him a black book with all our contact numbers.  Its as
if he's having bouts of dementia then other times he's normal?  It's
those bouts that shock us, cuz one minute he's completely fine the
next he looks lost, or tired, or says something completely off the
wall, like, "well everyone went home so I think I'll go back to bed".
All the while looking right at me.  I can still see him carrying on
for another year.  I wonder though with the next surgery if he'll
progress to stage 3 if there is such a stage.

>If the surgery prolongs his life, and he's vegetative, what good
>does that do anyone?  What were his wishes in this regard?  Did
[quoted text clipped - 4 lines]
>the inevitable, and in part to help your relatives deal with
>their denial.

I agree, but my step mom becomes defensive when we try to help or
suggest things that may help her.  We've (my sister and I) only
yesterday decided to step away from giving her advice and concentrate
on taking care of my dad.  If that makes any sense.

Jane A
Adelle D. Stavis, Esq. - 24 Jun 2004 00:03 GMT
> >> Anyway, I know this becomes progressively worse, my sister and I have tried
> >> to prepare ourselves for this, my step mother and brothers are both in
[quoted text clipped - 34 lines]
> for another year.  I wonder though with the next surgery if he'll
> progress to stage 3 if there is such a stage.

You know, this sounds just like my FIL early in his progression. We don't
know whether it was multi-infarct/vascular dementia or frontal lobe
dementia, but he would be lucid and productive one second and then start
talking about the people who come at night and steal things, or how they
were going to build a warehouse right next door on their residential street.

Eventually, my FIL forgot he had congestive heart failure and refused to
take his meds, landing himself in the hospital. The doctor finally saw what
he was really like and refused to release him to anywhere except a Nursing
Home. He fell there and broke his hip. Given he was still social, verbal,
ambulatory, continent and liked to pace (almost non-stop) we opted to have
his hip surgically repaired instead of being stuck in bed the rest of his
life. The affect of the anesthesia was huge. He lost most oral motor skills
and became incontinent. Within 48 hours of surgery, he aspirated something
and wound up with pneumonia. Then he had an MI and a stroke. He never
recovered.

Now wait - I didn't write that to scare you. Our decisions were based on
quality of life. We are very comfortable with our decisions. He was a man
who would have extreme trouble coping with being bedridden. And there was no
way to see he would drop so many levels from the anesthesia and never have
any chance to gain them back. And ultimately, to go earlier in this disease
process is a greater blessing than becoming vegetative and going later.

I think you have Made the best decision for your Dad based on who he is now.
No, he will not be this same person 2 or three months from now. But if he is
still often lucid, not doing surgery and his trying to cope (while confused)
with knowing his own body is poisoning him would be way too much to handle.

Adelle Stavis
Jane Again - 25 Jun 2004 00:24 GMT
> I think you have Made the best decision for your Dad based on who he is now.
> No, he will not be this same person 2 or three months from now. But if he is
> still often lucid, not doing surgery and his trying to cope (while confused)
> with knowing his own body is poisoning him would be way too much to handle.
>
> Adelle Stavis

Well the doctors feel he'll be a great candidate for artery transplant.
Rather then amputation they are transplanting the arteries from his upper
legs into his lower legs, then installing artificial arties in the upper
legs.  He will loose his toes.  He still has strength in his legs to support
himself, he has arthritis in his arms and shoulders.  This is a reason for
this operation rather then amputation, as he doesn't have the strength in
his arms to push himself around in a wheel chair.  He's made the decision to
go forward with the operation.

Now my feelings, I'm thinking by the time they do all this operating and by
the time it heals enough to benefit, will he be coherent enough to benefit?
The other thing is if this doesn't work correctly, or it doesn't heal
correctly due to his diabetes, he'll end  up going under again to have them
removed.  What will is state of mind be should they put him out again, since
he seems to disappear a little more each time he is put under.  It's not my
decision, I am the baby of the family (first marriage) and taken seriously
the least, between my sister and my step mom and of course my fathers
wishes, they make the ultimate decisions.  I've voiced my concerns, and my
family feels like I'm passing on hear say and don't want to hear me without
some serious documentation to back anything up.  If it were my choice, which
has clearly been brought to my attention that it is not, I would amputate,
rather then taking the risk of having to struggle with the healing and
possible amputation later.  I'd rather see him not be put under more...  Who
knows maybe this is the best way to go?  Maybe I'd be robbing him of a
better quality life?  I don't know but either way, regardless of what they
decide, I'll be there.

Jane
Adelle D. Stavis, Esq. - 25 Jun 2004 03:47 GMT
Check into the Lewy Body stuff, just for your own education and preparation.
But don't afraid to mention it to the doctor, either, whether the family
supports you or not. This floating back and forth between lucid and not
shouldn't be discounted, even if it makes predicting behavior harder.

My FIL was in that back and forth state for three years. And he controlled
himself so well that his doctors had no idea there was dementia, despite my
MIL's comments about erratic behavior. They thought he was only depressed.
He never got any Aricept or Excelon(?) which might have prolonged
functionality.

You can't help the medical issues your Dad has. Nor can you control that
others are influencing the medical decisions. All you can do is educate
yourself and provide whatever info seems relevant. Your role within the
family may be that small clear voice from the desert, talking sense. You
decide what will make *you* feel like you have done what you think should be
done. You have to live with yourself. After you decide, take peace (and
heart) that you are being true to yourself.
Wishing you luck and all good things!
Signature

Adelle D. Stavis, Esq.

> > I think you have Made the best decision for your Dad based on who he is
> now.
[quoted text clipped - 12 lines]
> legs.  He will loose his toes.  He still has strength in his legs to support
> himself, he has arthritis in his arms and shoulders.  This is a reason for

> this operation rather then amputation, as he doesn't have the strength in
> his arms to push himself around in a wheel chair.  He's made the decision to
[quoted text clipped - 19 lines]
>
> Jane
Glenfiddich - 25 Jun 2004 06:05 GMT
>Well the doctors feel he'll be a great candidate for artery transplant.
>Rather then amputation they are transplanting the arteries from his upper
[quoted text clipped - 22 lines]
>better quality life?  I don't know but either way, regardless of what they
>decide, I'll be there.

If things turn out badly, don't expect any thanks from those who
ignored your warning.
Your own inner peace of mind will probably be all the comfort you'll
get.

However, the overall decision whether to operate is a very complex
issue, where you have to balance future quality (unknown) of life with
future risks (unknown) of the operation.  Different people can and
will see the balance swinging in in different directions, partly based
I suspect on what they themselves would want in that situation.

In our case I opted against further surgery - but my wife was in the
last few stages of AD by that time, and any meaningful recovery from
the bad effects of more anesthesia was not really likely.
Dennis P. Harris - 24 Jun 2004 07:07 GMT
> Its as
> if he's having bouts of dementia then other times he's normal?  It's
> those bouts that shock us, cuz one minute he's completely fine the
> next he looks lost, or tired, or says something completely off the
> wall, like, "well everyone went home so I think I'll go back to bed".
> All the while looking right at me.  

It's very common for them to function adequately when they are
healthy and rested, and then have everything fall to pieces
because they are tired or have an infection of some kind.
Dennis P. Harris - 24 Jun 2004 07:09 GMT
> I agree, but my step mom becomes defensive when we try to help or
> suggest things that may help her.  We've (my sister and I) only
> yesterday decided to step away from giving her advice and concentrate
> on taking care of my dad.  If that makes any sense.

When folks are in denial, there are times when those who are able
just need to TAKE CHARGE regardless of what those in denial
think.  I would call hospice yourself and explain the situation,
including your mother's denial, and they will work with you to
educate your family.
hal@nospam.com - 23 Jun 2004 21:26 GMT
>> Anyway, I know this becomes progressively worse, my sister and I have tried
>> to prepare ourselves for this, my step mother and brothers are both in
[quoted text clipped - 8 lines]
>memory and cognitive function after surgery that involved general
>anesthesia.  

Same here.  My mother has a definate family history of AD, and had
shown some early symptoms over the  years.  Less than 3 months ago she
had a lung removed because of cancer.  Since then her decline has been
dramatic.  In less than two months she has gone from mild to
borderline severe.  

Hsl

>Once he has the amputations, you can expect another decline, and
>you might want to consider whether it might not be better to
[quoted text clipped - 9 lines]
>the inevitable, and in part to help your relatives deal with
>their denial.
Evelyn Ruut - 24 Jun 2004 02:40 GMT
> Hello
>
[quoted text clipped - 64 lines]
>
> Jane A

Hi Jane,

Anesthesia has a very odd effect on alzheimer patients, unfortunately.
Over the years that I have been posting here, I have seen so many accounts
of unusual, drastic, sudden decline after being anesthetized for even minor
surgery.

Please bear this in mind as you make this difficult decision.   Best of luck
to you and yours.

Signature

Regards,
Evelyn

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

Mary Gordon - 24 Jun 2004 12:33 GMT
Jane, not that it matters in the big picture, given the constellation
of issues your poor father is facing - but I'm wondering if your dad
actually has Lewy Body dementia rather than Alzheimer's. Huge
fluctuations are one of the hallmarks.
Here is some information http://www.pdsg.org.uk/Booklet/dlb.

If you do a google on Lewy Body dementia you will find more
information but one of the hallmarks is
"the patient has periods of being alert, coherent, and oriented that
alternate with periods of being confused and unresponsive to questions
(although awake). This fluctuation is a relatively specific feature of
Dementia with Lewy Bodies".

Mary Gordon
Darryl - 24 Jun 2004 13:25 GMT
>Jane, not that it matters in the big picture, given the constellation
>of issues your poor father is facing - but I'm wondering if your dad
[quoted text clipped - 10 lines]
>
>Mary Gordon

/Darryl raising his hand in agreement.

Jane, your Dad *sounds* like he's going through what my Dad did (he
was orignally diagnosed with AD but autopsy revealed DLB).  Everyone
has been thorough on advice, etc., and I'd just like to add that if
DLB has not been ruled out, follow Mary's link and read up especially
on the use of anti-psychotics in Lewy Body patients.  Ask the doctors
if they've considered this diagnosis.  

Take care,
Darryl.
Mary Gordon - 24 Jun 2004 22:58 GMT
Accidentally clipped off the end of the link
http://www.pdsg.org.uk/Booklet/dlb.htm
Jane Again - 25 Jun 2004 00:14 GMT
Thank you very interesting.  I'll give it a read.

Jane

> Jane, not that it matters in the big picture, given the constellation
> of issues your poor father is facing - but I'm wondering if your dad
[quoted text clipped - 10 lines]
>
> Mary Gordon
Char - 09 Jul 2004 04:56 GMT
Dear Mary,

Even though I've read alot abourt LBD, I checked  out this site.  I
have to say, it describes John's symptoms perfectly.  I printed it out
because it does so concisely describe his symptoms.  It really just
confirms what most of us have thought all along.

Always,

Char

> Thank you very interesting.  I'll give it a read.
>
[quoted text clipped - 14 lines]
> >
> > Mary Gordon
 
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