Usenet has hundreds of discussion groups about everything conceivable, including Alzheimer's Disease. You can access this group by:
1. In your browser, go to www.google.com.
2. Look in the Google menu for Groups. If you don't see it, click on More >>.
3. In the search box, enter "alt.support.alzheimers", as shown here:
4. You will be presented with a list of messages entered by other people. You can read those messages, and enter your own questions or comments.
There are many alternatives to Google, and many have a better display format than Google's simple listing. If you go to this web site, which is actually German, and enter the group name as shown, you will go to the same news group, but the messages are displayed in an indented tree structure, so it is obvious to which message people are responding.
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http://alt.nntp2http.com/support/alzheimers/ |
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Another source: 
Also, you can check with your ISP. Many ISPs provide access to news groups (also called NNTP) free of charge. You can use a public domain news reader or Microsoft Outlook Express to read an NNTP news feed.
This is not a real-time chat. Messages are posted to a central server, then distributed to duplicate news servers (called "mirrors") around the world. Replies may or may not be posted over several days, even weeks.
Here is an extract, slightly edited, showing one message and its replies. Personally, I found this one quite informative.
alt.support.alzheimers
From: "Barbara H"
Date: Sat, 9 Jun 2007 09:34:54 -0500
Local: Sat, Jun 9 2007 10:34 am
Subject: New Member Here - Greetings!
Hello group. I meant to join in by introducing myself first but
I needed
some quick help earlier so I've already jumped in with both feet.
I was so
glad to have a place to go. I'm dreading what's coming and I can't
change
it. Last week we had our first big crisis so now it's time to
get in gear.
Maybe I can learn how to avoid the next one. I will find a local
support
group I'm sure. One of you gave me a link to check on that. I
can tell
though that this group is going to help me a lot.
I mostly just read the seniors groups plus gardening and needlework.
Just
recently I've been learning how to help manage my type 2 diabetes
with
another very knowledgeable group. Diabetes is a new complication
in my life.
I find the stress of what is happening to us right now is really
messing
with my control. Anyway, that's another fine mess I've gotten
myself into! I
am 61 years old and alone by choice and I was able to happily
retire almost
10 years ago. I have a brother and his wife helping and we are
all in the
same town together so I guess for what is about to happen to us
all we have
the best possible circumstances going for us.
It seems my 82 year old father has very quickly gotten worse.
He has shown
increased memory loss, confusion, angry outbursts and accusations
plus some
paranoia. Last week, in anger, he took his car and drove nearly
600 miles.
He was gone for 14 hours when the police in a neighboring state
found him.
It was dark and he was driving on the highway, 40 MPH , on the
rim of a
blown out tire. He didn't know where he was and he couldn't tell
them how to
call us. We had filed a missing persons report so when they entered
his name
they were able to reach us. I keep a cell phone in his car but
he couldn't
remember to use it or to tell them it was there. He never turns
it on so we
couldn't call him and he can't hear well enough to know its ringing.
In the
past when he's needed me he has always been able to call me from
his car. Oh
well, those days are over. The police were so good to him and
we are so
lucky he wasn't hurt nor were any citizens he passed along the
way. This is
so unexpected. He has driven a few blocks just a couple of times
in the past
year. Just up to his neighborhood grocery store. He doesn't like
to drive
and he prefers to have one of us take him everywhere. We are always
happy to
do this for him. He does like to have his car in the garage though.
Right
now, we have kept his car away from him. He is having a hard time
with this.
I was able to get him to the doctor this week and he's just
had an MRI and a
quick memory testing session. His MRI revealed a recent injury
(he fell
about 4 weeks ago) that caused some bleeding in the brain and
according to
his doctor could have definitely contributed to his behavior changes.
He
also has had a small stroke sometime in the past. He scored 22
of 30 on the
memory test. The doctor told him that was not good. I can't find
any
guidelines on what that actually means. Anyone know?
His doc explained all of these things and told him he had early
stages or
mild memory impairment. He never used the "A" word.
I'm not sure why. On
the way home dad asked me if they had gotten his test results
back yet. He
didn't remember from 10 minutes back what he'd been told. I showed
him the
Aricept pill pack his doc had given him and he read the header
and looked at
me and asked "is that what I have? Alzheimers?" I feel
so bad for him. I
just said "maybe". I'm hoping that with the medicine
and once the blood in
his head is absorbed and dissipates maybe he will have more lucid
moments.
I just don't know what to expect.
Any recommendations will be appreciated. Sorry for the long
rambling post.
At this point I can't find a short version in my head!
I'm glad to have found this group. Thanks for the earlier answers.
I
learned something in each one.
Barbara H
From: "Evelyn Ruut"
Date: Sat, 9 Jun 2007 14:04:03 -0400
Local: Sat, Jun 9 2007 2:04 pm
Subject: Re: New Member Here - Greetings!
Hi Barbara,
There are a lot of different causes that seem to manifest in
the same way,
with memory loss and such. Hardening of the arteries, mini strokes,
head
injuries, and of course, alzheimers disease and probably a lot
more I
haven't mentioned.
Having one of those doesn't necessarily mean that they can't
have one or
more of the others too. It sounds like your dad may be working
on a couple
of them at the same time.
Of course, you know he shouldn't be allowed to drive anymore.
Not only for
his sake, but the people he might encounter out there. Once someone
starts to lose their faculties like that, it is probably a good
bet he
shouldn't be alone anymore.
I am glad you found this group too, it was a real help to me
and to many
others over time. My mother in law is gone for a couple of years
now, but
the caregiving experience was a very powerful one in our lives.
I stay
here to pass on the favor of all the good advice I received here,
when we
were totally clueless.
I am also glad you are looking for a real life support group
in your area.
Our local group and this one got us through the worst of it all
:-)
Again.... welcome.
--
Best Regards,
Evelyn
From: "Alan Meyer"
Date: Sat, 9 Jun 2007 14:37:20 -0400
Local: Sat, Jun 9 2007 2:37 pm
Subject: Re: New Member Here - Greetings!
Barbara,
I am very sorry to hear of your situation.
I'll first mention some standard advice. If you haven't already
done so, make sure that you and/or your siblings have good
financial and medical powers of attorney for your father's
affairs. You should see a lawyer who does a lot of this kind of
work. I found here in Baltimore that an attorney would do a
complete setup of will, trust (if he recommends that) and powers
of attorney for about $2,650. I don't know how that compares to
others, but it may give you a ballpark estimate of what's
involved.
You want to get started on the legal and financial technicalities
as soon as you can because they take time and they are vastly
easier to do if you can get your Dad to participate - which it
sounds like he may still be able to do. Getting a bank to change
the names on an account, getting a power of attorney, etc., is
easy when your Dad can sign the papers in front of a witness.
It's much harder if he can't or won't.
You may find it necessary to use some manipulation on your
Dad.
The need for this will increase over time. Don't feel bad about
it. When you know you're protecting him and that his own
position is unsafe, it's a far better thing to manipulate him
than to allow him to hurt himself or someone else.
The car is an obvious problem. My brother and I talked to our
father and told him that my brother's car had died and he
couldn't get to work. We asked that, since my Dad hardly ever
used his car, would he give his to my brother, who couldn't
afford to buy a new one at the moment. Instead of seing this as
having his car taken away, our Dad saw it as his giving a helping
hand to his son. It worked well.
If your Dad lives alone, that too is a problem. There may come
a time when he walks out of the house, or when he turns on the
stove, or when he gets hurt and doesn't know how to use his cell
phone or his regular phone. You'll need to plan for this for the
future.
Having him move in with one of you is an option - but be aware
that it's a big responsibility and often leads to a very high
stress environment for you.
If your Dad can afford it, assisted living can be ideal. This
can be easier to do when your Dad is still functioning at a
relatively high state than later on. In the first place, it
allows him to move into a higher functioning unit and to stay
there longer. In the second place, it allows him to make an
adaptation to the change while he is better able to do it.
You asked about why the physician never used the "A"
word. I'm
guessing first, that he doesn't know for certain what the cause
of the problem is. AD is not easy to diagnose. Secondly, he may
have hoped to spare you or your Dad's sensibilities and not take
away hope since, in fact, he couldn't confirm that it is AD.
However the fact that he prescribed Aricept indicates that he
probably considers AD to be the most likely diagnosis.
As for what to expect on Aricept - it varies from patient to
patient. I'm not a doctor or any kind of expert, so what follows
is just a layman's poorly informed opinion. Your Dad's doctor
may know more and a specialist will know a lot more.
I think that many patients get zero benefit from Aricept. Others
get a modest benefit. It can improve mental functioning to a
degree in some patients for some period of time, but will not
slow the progress of the disease. Even if your Dad benefits from
the drug, at some point down the road, maybe in a year or two,
your Dad will be in exactly the same place at the same time that
he would have been in without the drug.
Although it happens, I suspect it is rare to actually perceive
a
difference in a patient after he starts Aricept. More likely
there will be a small improvement in test scores, or a slower
decline - but only for some period of time.
Look out for side effects. My mother-in-law experienced severe
tremors after starting Aricept. The drug prolongs neuronal
stimulation. It can do that in the nerves that activate muscles
as well as the nerves that participate in thinking. If that
happens, cutting back the dose is probably a good idea and stop
altogether if that doesn't work.
My best wishes to you, your Dad, and the rest of your family.
Alan
From: Mary_Gor
Date: Sat, 09 Jun 2007 11:59:57 -0700
Local: Sat, Jun 9 2007 2:59 pm
Subject: Re: New Member Here - Greetings!
Hi Barbara
Your dad had the MMSE test - which is the mini-mental state
exam. A
score of 24 or less out of 30 indicates global cognitive impairment.
Here is a good link
http://www.health24.com/medical/Condition_centres/777-792-798-1565,17...
I hope you realize now that he cannot drive again. Period.
No wait and
see. Its done. You should talk to the doctor about getting his
license
pulled, but also take definitive steps to prevent him from driving
ever again, whether that means selling the car, permanently disabling
it, whatever. I'd also be getting him put on the local wandering
persons registry, get him a medic alert bracelet that says memory
or
cognitively impaired, and iron name tags into his clothing with
name
and contact phone number.
Your dad may not have Alzheimer's. The second most common cause
of
dementia in the elderly is called multi-infarct, or vascular dementia.
It is also progressive, incurable and results in dementia, but
its
from small strokes, small bleeds, blockages etc. in the vessels
in the
brain. There are also other causes of dementia. It is absolutely
worthwhile to see a neurologist or pyschiatrist with a specialty
in
dementias to get him fully examined, and have a good talk with
them
about diagnosis and what to expect etc. A good assessment will
more
fully explore his deficits - in order for YOU to get your head
around
this, you need a real picture of what he can or can't do mentally
at
this point, so you can be realistic (i.e. if he lives alone, that
has
to change and soon).
M
From: "august"
Date: Sat, 9 Jun 2007 14:34:55 -0700
Local: Sat, Jun 9 2007 5:34 pm
Subject: Re: New Member Here - Greetings!
Barbara this latest incident means you have reached crisis
time. You need to
find out what medical problems might be complicating your father's
mental
status. If he has a hematoma he may need surgery to relieve the
pressure on
his brain. My elderly neighbor had a brain hematoma and he did
not improve
until after surgery. Your father's driving needs to be stopped
today - by
any means necessary - including disabling his car. Ask his Dr
to tell the
licensing bureau to require retesting as a means to getting his
license
permanently revoked. Get a medical and regular power of attorney.
This can
be done very easily and is not expensive.
Buy and read the book "The 36 hour day" that is a
standard guide for all
dementia caregivers. Don't expect too much from Aricept - possibly
some
minor improvement. Expect the next few months or years to be very
time
consuming with many difficult choices ahead for you.
You must stop your father from traveling on his own. In my
part of the
country there is about one person a week who has dementia found
dead each
week during the winter months who has gone on a short errand and
ends up
dead hundreds of miles from home. The kids always say "we
knew he had
problems but did not know he was this far along". Often there
have been
prior incidents but nothing was done. This incident is your wake
up call.
Welcome to the group no one wants to join. good luck. AW
http://www.amazon.com/exec/obidos/ASIN/0446610410/bookstorenow57-20
From: Dennis
Date: Sat, 09 Jun 2007 21:43:57 -0800
Local: Sun, Jun 10 2007 1:43 am
Subject: Re: New Member Here - Greetings!
to echo what others have said: have your father sign durable
power of attorney for health care, and one for his business
affairs, sothat you can make medical decisions for him and manage
his financial affairs, which are probably already a mess.
have his primary care doc refer him for a full neuro and
psychiatric exam, preferably at a hospital or clinic experienced
in geriatric dementias. you need to have them eliminate possible
physical causes like low thyroid, normal pressure hyrdocephalus,
side effects of statin medications like lipitor, overdoses of
meds (because he didn't remember taking them he might take them
more than once), etc.).
you also need to know what kind of dementia it is, since frontal
lobe dementias can cause paranoia, anger, & sudden changes
in
behaviors, and medications that can help alz patients often don't
work on frontal lobe dementias.
don't let his doc tell you this is "normal effects of
aging"
because there is no such thing. and once you get the power of
attorney, don't just accept whatever the doc says --- if you feel
you aren't getting answers, or that the doc really isn't up to
date on dealing with dementias, find another doctor, one that
actually wants to support families in taking care of their LOs.
fyi, i often found it useful to fax a note to the doctor the
day
before my mother's visits, to give her a heads up on what was
happening because my mom would either be totally vague, or she
would lie about not smoking or about staying on her meds.
finally, you need to ask your father's doctor to write to DMV
and
have your father's license revoked. period. if the doc balks,
tell him that because you have asked him to do so, if does not
and your father ends up driving and killing someone HE (the doc)
will be liable.
once his license is revoked, the best thing is to sell his car.
welcome to the club no one wants to join. feel free to come
back. FYI, much of what i and the others have said is available
in the group archives on google groups. like you and evelyn, i
ended up here during a crisis, and have stayed to help others
even though my mom's been gone for over 2 years.
From: "Barbara H"
Date: Sun, 10 Jun 2007 10:45:41 -0500
Local: Sun, Jun 10 2007 11:45 am
Subject: Re: New Member Here - Greetings!
Evelyn, Alan, Mary, August & Dennis. Just read your replies
and I truly
appreciate the wealth of knowledge and information you are able
to share
through this group. Some of the uncertainty and helpless feelings
are
beginning to lift a little. While I'm able to recognize some of
the things
we've done right or are at least working in our favor I also now
see many
things that need tightened up and accomplished soon.
We will begin the process this next week to get proper power
of attorney
while dad is still able to participate. I'm sure we will have
to do some
manipulating so that he will not misinterpret what we are doing.
I
especially appreciate knowing that its okay to do this. I am already
an
owner on his bank account and have kept his finances in order
now for
several years. When our mother died my father had never even written
a
check. He would describe himself as a people person, not a numbers
guy.
Anyway, I also invested in his home about 12 years ago so that
he could do
some updates and be able to keep it. He put me on the deed as
a co-owner at
that time. I guess I need to know what impact that will have on
both of us.
His health care expenses may require the eventual sale of his
home. Oh well,
questions for the attorney I guess. I feel like I'm able to protect
some of
his assets right now and financially he is fine. However, I know
now not to
leave any of this to chance. I have actually taken his files home
with me
for now.
Most urgent seems to be the car situation. You all were quite
clear on that
topic. It's like you've all "been there & done that".
J A small part of me
wants to just give it back to him and stop the bitter feelings
he has toward
us right now. But, since his run away trip we have kept his car
out of
sight. We do not plan to give it back to him. That's been a terrible
ordeal
for us all. We would like to keep it to help shuttle him around
for now but
if that turns out to be a problem we can sell it. It's a mini
van and he
just can't get in and out of a low car any more. I have a van
also so we'll
make do with mine most likely. He's still not speaking to my brother
and I'm
barely back in the door. But, that's okay we didn't have time
to ease him
away from his car. This episode forced us to act quickly and to
firmly tell
him that he won't be allowed to drive unless a doctor tells him
it is safe.
Which brings up another problem because his doctor refused to
answer my
direct question regarding his being allowed to drive. Fortunately
dad doesn't
remember that and we have told him the doctor says absolutely
no driving.
Like you said Dennis, I will insist that he write to the DMV and
request dad's
license be revoked or replaced with an ID only type registration.
The past
few days dad has calmed down a bit and doesn't ask for the car
back.
As to the living alone problem. We will begin searching for
a good assisted
living center and I believe we have time to ease him into that
idea. If his
head injury was contributing to his erratic behavior maybe he
will go back
to his mild stage of dementia as that continues to heal. I just
don't know.
For now we've told him that he is at high risk for additional
bleeding and
for the next month must be very cautious. I'm not so sure I could
handle him
moving in with me. I guess if there were a really good diagnosis
that said
he wouldn't be a threat to himself or others I might consider
that. My
brother and his wife still work so that's not an option.
Well, we have lots of bridges to cross and I thank you all
again for your
advice and support. I'll order the book August recommended. I'll
be adding
the other items recommended to a new list of things to check out
or do now.
I feel like I'm walking into the fog he is living in! We've lived
through
other family crisis and sad times but this is so much more frightening.
I
did find a local Alzheimers group, I guess they are a support
group. They
don't meet again until June 27th but I'm going to be there and
find out what
I can.
Best,
Barbara H
From: "Adelle"
Date: Sun, 10 Jun 2007 17:46:57 -0400
Local: Sun, Jun 10 2007 5:46 pm
Subject: Re: New Member Here - Greetings!
Hi, Barbara;
As others have said, welcome to the club no one should be a member of.
Your dad sounds similar to my FIL. The mini stroke (TIA) is
a vascular
problem, which points to vascular dementia being part of the equation
(there
could be more factors). The anger and paranoia, but otherwise
decent skills
says the frontal lobes be more affected than the rearmost lobes.
The
difference between alzheimer's and frontal lobe dementia is that
AD starts
in the rear of the brain first, affecting memory and some cognitive
skills
first. FLD affects executive functioning first - how to organize
a task, how
to control emotional responses, how to maintain self control....
Does your
dad have trouble retrieving specific words while speaking? Will
he talk
around a word he can't grasp (You know, that thing you use to
cut with; that
place we went when your mother did....) and will often continue
by saying,
"well, anyway...." and be able to continue the sentence
or thought without
the word. If yes, this subtle loss of verbal retrieval and oral
planning
skills is a hallmark of frontal lobe issue. A neon arrow, if you
will.
The best test for what part of the brain is affected is a PET
scan. As
others have said, a full neuro-psych workup by a geriatric neurologist
gives
the fullest picutre of your dad's state and abilities.
> Which brings up another problem because his doctor refused
to answer my
> direct question regarding his being allowed to drive. Fortunately
dad
> doesn't remember that and we have told him the doctor says
absolutely no
> driving.
With a FLD, this could be problematic if he asks the doctor
about driving.
Your dad will remember your telling him its the docs orders not
to drive and
if the doctor denies it, it will fuel your dad's paranoia towards
you.
Ask the doctor to write a letter to the DMV in your area reporting
your dad
as someone whose medical condition indicates he should lo longer
drive. If
the doctor balks, others here have reported that asking the doctor
if they
want to be driving down a road and have your dad driving towards
them, has
proven successful in changing a doctor's attitude.
My MIL needed a somewhat raised car to get in and out of that
she liked; I
think it was a Vista. She traded it for a crossover car a few
years ago,
also slightly raised. And people report the Toyota Scion and Honda
Element
are also easy to get in and out of. Once you have an enduring
POA and a
diagnosis of dementia, you can sell Dad's car and put any proceeds
towards
his care.
> Like you said Dennis, I will insist that he write to the
DMV and request
> dad's license be revoked or replaced with an ID only type
registration.
> The past few days dad has calmed down a bit and doesn't ask
for the car
> back.
> As to the living alone problem. We will begin searching
for a good
> assisted living center and I believe we have time to ease
him into that
> idea. If his head injury was contributing to his erratic
behavior maybe he
> will go back to his mild stage of dementia as that continues
to heal. I
> just don't know. For now we've told him that he is at high
risk for
> additional bleeding and for the next month must be very cautious.
I'm not
> so sure I could handle him moving in with me. I guess if
there were a
> really good diagnosis that said he wouldn't be a threat to
himself or
> others I might consider that. My brother and his wife still
work so that's
> not an option.
Just something to keep in mind as a 'just in case' - If you
have a loved one
with FLD (if that turns out to be the issue) and a tendency to
get angry,
there are issues with having him in assisted living or anyplace
that isn't
equipped to or willing to put up with agressive, antisocial behavior.
My FIL
only got aggressive when we was wandering late at night and was
confused,
but the minute you tried to guide him anywhere or get him to the
correct
place, he could become very physically aggressive. He needed specific
medication (were never told precisely what by MIL) to keep the
aggression in
control and it needed to be ingested on a very precise schedule.
Assissted
living won't do that level of care, and aren't equipped for aggressive
...
read more »
From: "Barbara H"
Date: Sun, 10 Jun 2007 17:49:31 -0500
Local: Sun, Jun 10 2007 6:49 pm
Subject: Re: New Member Here - Greetings!
I'm not sure how this is suppose to work .... I snipped a whole
bunch of
good stuff ... hope I did this right. B
Does your dad have trouble retrieving specific words while
speaking? Will he
talk
> around a word he can't grasp (You know, that thing you
use to cut with;
> that place we went when your mother did....) and will often
continue by
> saying, "well, anyway...." and be able to continue
the sentence or thought
> without the word. If yes, this subtle loss of verbal retrieval
and oral
> planning skills is a hallmark of frontal lobe issue. A neon
arrow, if you
> will.
That's exactly what is happening with his word skills. The
other day he
referred to his "little pieces of medicine" not being
able to come up with
the word "pills".
> The best test for what part of the brain is affected is
a PET scan. As
> others have said, a full neuro-psych workup by a geriatric
neurologist
> gives the fullest picutre of your dad's state and abilities.
I will pursue this recommendation and insist on a full neuro-psych
workup.
His doctor now is a geriatric specialist so he should be able
to refer us to
a geriatric neurologist.
> others here have reported that asking the doctor if they
want to be
> driving down a road and have your dad driving towards them,
has proven
> successful in changing a doctor's attitude.
Excellent suggestion. Can't argue with that logic.
> Just something to keep in mind as a 'just in case' - If
you have a loved
> one with FLD (if that turns out to be the issue) and a tendency
to get
> angry, there are issues with having him in assisted living
or anyplace
> that isn't equipped to or willing to put up with agressive,
antisocial
> behavior. My FIL only got aggressive when we was wandering
late at night
> and was confused, but the minute you tried to guide him anywhere
or get
> him to the correct place, he could become very physically
aggressive. He
> needed specific medication (were never told precisely what
by MIL) to keep
> the aggression in control and it needed to be ingested on
a very precise
> schedule. Assissted living won't do that level of care, and
aren't
> equipped for aggressive people. They need to protect the
other residents
> who are also very frail and vulnerable.
> And to be honest, a woman living alone is also not equipped
to deal with a
> male when he gets aggressive, which my MIL tried to do, but
wound up
> compromising safety to do so.
> While it may be the one thing you swore you'd never do,
please start
> looking into Nursing Homes in your area,
> Wishing you good luck!
> Adelle
I know this is good guidance. I'm just not at a point where
I can accept
that we may have to go the Nursing Home route. I've ordered a
new book
..... (along with The 36 Hour Day) it's called .....
"Old Age in a New Age: The Promise of Transformative Nursing
Homes" by Beth
Baker
I'm hoping I will get a better insight into what kind of care
we can expect
and maybe hope to find. Being a baby boomer myself these things
have been
on my mind for some time now. Having dad's crisis has pushed the
urgency up
on my calendar for sure!
Thank you so much for sharing your knowledge with me. I feel
better
prepared to start the discovery work needed to determine how best
to help
dad.
Best regards
Barbara
From: "Alan"
Date: Sun, 10 Jun 2007 18:52:00 -0400
Subject: Re: New Member Here - Greetings!
Barbara,
It sounds like you have already started the process and are
doing
the right things. As far as putting your name on the bank
accounts and house, we had not done that in my mother-in-law's
case and our lawyer told us that we had to. It was the right
thing to do. Having your name on these things will make it easy
for you to act for him.
My Dad thought the world of me, and I of him. When he got
dementia, I was able to briefly convince him to give me full
control over his finances. I took his bank account, stocks,
credit cards, and checkbook. I acted much too late. He had
already put almost two thirds of his life savings into terrible
investments that crashed and became completely worthless.
He allowed me to take control because he trusted me, but
afterwards, it tore him apart. I had horrible sessions with him
where he told me I was killing him, he felt like a nobody without
any money. He begged me to give it back.
I would go away crying, feeling like I was killing him if I
took
his money and killing him if I didn't.
I eventually found a solution to that problem. I opened a joint
checking account for the two of us and put $200 in it. I gave
him a check book. I told him, look, you've got money. If you
need to buy something, you can write a check. If you need some
cash, you can cash a check. If the account gets low, just call
me and I'll put some more in it.
In fact, he never spent the whole $200, but he felt better.
I wrote earlier about what my brother and I did with his car.
That worked for us.
I found that the best thing to do was to try to find a solution
that satisfied my Dad's emotional needs while minimizing the
risk to him.
Another thing I did with my Dad was to tell him, Look, you've
got
money (the $200 checkbook), if you need to get somewhere it's
easy, just call a cab. I went through calculations to show him
that he seldom used a car (he was living in assisted living by
then), and it was much cheaper to take cabs than to pay for
license, insurance, and maintenance on the car, and easier to
because he didn't have to worry about keeping up the car,
parking, etc. He had always been a practical person and
liked the idea that he was saving money.
In fact, I don't believe he ever did call a cab. But knowing
he
could made him feel a lot better. He no longer felt that he
was stuck and with no options.
Alan
From: "Dennis"
Date: Sun, 10 Jun 2007 20:11:32 -0800
Local: Mon, Jun 11 2007 12:11 am
Subject: Re: New Member Here - Greetings!
"Barbara H" <bhenderso...@cox.net> wrote:
> Anyway, I also invested in his home about 12 years ago so
that he could do
> some updates and be able to keep it. He put me on the deed
as a co-owner at
> that time. I guess I need to know what impact that will have
on both of us.
> His health care expenses may require the eventual sale of
his home. Oh well,
> questions for the attorney I guess.
that's why folks should consult an elder care attorney *before*
doing what you did. you definitely need to consult one ASAP.
From: "Dennis"
Date: Sun, 10 Jun 2007 20:17:51 -0800
Local: Mon, Jun 11 2007 12:17 am
Subject: Re: New Member Here - Greetings!
On Sun, 10 Jun 2007 10:45:41 -0500 in alt.support.alzheimers,
"Barbara H" <bhenderso...@cox.net> wrote:
> Most urgent seems to be the car situation. You all were quite
clear on that
> topic. It's like you've all "been there & done that".
J A small part of me
> wants to just give it back to him and stop the bitter feelings
he has toward
> us right now. But, since his run away trip we have kept his
car out of
> sight. We do not plan to give it back to him. That's been
a terrible ordeal
> for us all.
the best strategy is one *i* used --- let his doc and the DMV
be
the bad guys. that was the first time i asked the doc in advance
to write directions and instructions on a prescription form, so
i
could point to it and say "see, right here the doc says 'NO
DRIVING"" or "see, the doc said 'at least 30 minutes
of exercise
every day!'". works wonders if they're the type that always
obeys doc's orders...
rule 1 when maneuvering a demented person to do what she/he
needs
to do: always blame it on someone else: the doc, DMV, medicare,
the hospital, the garage that's waiting for car parts...
From: "Dennis"
Date: Sun, 10 Jun 2007 20:28:44 -0800
Local: Mon, Jun 11 2007 12:28 am
Subject: Re: New Member Here - Greetings!
On Sun, 10 Jun 2007 10:45:41 -0500 in alt.support.alzheimers,
"Barbara H" <bhenderso...@cox.net> wrote:
> As to the living alone problem. We will begin searching for
a good assisted
> living center and I believe we have time to ease him into
that idea.
if he's already upset, DON'T WASTE YOUR TIME. it will result
in
tremendous anger and resentment. don't even think of mentioning
it any time he could possibly overhear you!
especially don't mention it UNTIL YOU HAVE THE DURABLE POWERS
OF
ATTORNEY SIGNED. if you do, he will obsess on it and not let go
of his anger for months.
get the full medical evaluation, and have all of you kids sit
down with the geratric social worker to have a no-denial
discussion of whether he can live safely alone any more, or needs
to be in a secure facility.
then choose the place you want him to live, which will probably
have a waiting list --- so get him on it. as soon as they have
an opening, do as i suggested in another thread --- take him for
a drive while you move him, and deliver him to the new place,
and
then don't visit for a week or two.
that is my summary of what has been repeated here over and
over
based on experience, especially when the LO has no insight into
his disability (they rarely do, that's the nature of the
disease), and is paranoid, angry, and mistrustful.
it sounds cruel, but it truly is the kindest thing you can
do, to
put him in a place where he will be secure and safe. far better
that than have him wander off and get mugged or lost, or set his
house on fire.
From: "Adelle"
Date: Mon, 11 Jun 2007 11:49:58 -0400
Local: Mon, Jun 11 2007 11:49 am
Subject: Re: New Member Here - Greetings!
Dear Barbara;
You did the snipping just right. I'm so glad you wrote back.
That thing about losing words is a big clue to what's up with
your dad. And
unfortunately, it will impact slight differences in the course
of his
progression. While "the 36 hour day" will give great
insights into
caregiving, FLD presents unique issues. As it progresses, oral
skills issues
will be lost faster than if he had AD.
Please spend a bit of time researching Frontal Lobe Dementia
on the web. You
will see names like Pick's Disease and Dementia with Lewy Bodies.
Your dad
probably doesn't have those. But vascular dementia can strike
any part of
the brain, depending on which blood vessels wind up being affected,
so your
dad's dementia may mimic these named dementias.
One thing to remember is that your dad's memory and ability
to recall things
related to an emotional response will remain more acute. He will
be able to
use logic and reason to some extent, often to try to get his own
way (can be
very manipulative). He will seem like himself far longer than
AD patients
do, even when he also presents with very similar deficits. He
will be able
to maintain cogent conversation, talk about hobbies, even some
long standing
issues in the news (though new, small details will become confused).
This
will present itself as being able to seem 'normal' during shorter
medical
visits, and medical personnel perhaps not being able to accept/give
credence
to symptoms that you say he presents at home. It's very frustrating.
An
example is
Your dad will be unaware that he has deficits, impairment in
judgment, of
distance, etc. He will develop compulsions. FIL entered contests
and
continually did those 'send a dollar to the person on top of the
list
schemes' until MIL just started hiding all the cash, convinced
that he'd
miss a chance to win if he didn't. He also kept buying screwdrivers,
his
mind stuck on the fact that he might not have the precise one
he'd need when
he'd want it. He will also have problems with following a sequence
in *new*
things, but may retain ingrained habits a long time, as long as
he remains
in familiar surroundings. SO he will seem like he is coping well,
but faced
with new or uncommon experience (new appliance, even if it works
exactly
like the old one, new street sign put up in familiar place, emergency
event
like a grease fire or water heater leak) he will be completely
unable to
cope and figure out what to do (call you, call plumber, take same
route...).
Like in AD, he cannot learn new things. Unlike AD, he will retain
some
functionality longer, provided he has all familiar prompts. So
taking new
meds will mean new, unfamiliar things. He may be able to do them
if combined
into existing familiar habit. Or not. In AD, its mostly 'or not.'
My FIL, a lifelong woodworker, lost his ability to follow directions
of a
woodworking project, but could still perform household chores
correctly
without supervision, even long past becoming delusional. He washed
dishes,
and maintained hygiene (remembering the sequences involved in
how to bathe
and shave). The latter he was able to keep until moved to a nursing
home;
the unfamiliar somehow meant he lost whatever prompts his brain
used.
But the paranoia, the anger and negativity may affect his willingness
to
take his meds. My FIL 'forgot' he had congestive heart failure
and was
convinced he had no need of medication and that the medication
was a waste
of money and some sort of conspiracy between the docs and MIL.
Of course, it
resulted in a medical crisis which then exposed how bad the dementia
was -
he just couldn't hide it over 72 hours in a hospital like he could
for two
hours in a doctor's office.
I 'hear' you aren't ready to consider nursing homes. Just keep
it in the
back of your head.
Also, it might be a good idea to have plans in place in case
the paranoia
and anger combine into aggression. The frontal lobes are where
the 'brakes
on antisocial behavior' are located. Some people get aggressive,
some lose
inhibitions (undress, touch people inappropriately), some lose
appropriateness (angry when not warranted, wrong choice of clothing
for
weather, saying rude things). Let local law enforcement know that
any
aggression will be mental health related and not criminal in case
you need
help if he gets out of control. Or in case he decides you are
keeping him
prisoner, or stealing from him and calls police to report you
or get help.
MIL never did this. She couldn't keep him from driving long past
the time he
should because he'd become belligerent when he couldn't find the
keys and
she took the path of appeasement as opposed to being proactive.
She felt
unsafe several times, with his reactions to keys and medication,
but lived
in the situation, preferring to try to defer to the semblance
of his
dignity, than treat him in ways she thought were disrespectful.
Not always
good choices.
Take it a day at a time. But please try to make good choices
that protect
everyone's health and well being - including your own. Wishing
you all good
things
Adelle
From: "Barbara H"
Date: Tue, 12 Jun 2007 09:37:19 -0500
Local: Tues, Jun 12 2007 10:37 am
Subject: Re: New Member Here - Greetings!
"Alan Meyer" <amey...@yahoo.com> wrote in message
news:-aednR3O7OsObvfbnZ2dnUVZ_ompnZ2d@comcast.com...
> snip.....
> The car is an obvious problem. My brother and I talked to
our
> father and told him that my brother's car had died and he
> couldn't get to work. We asked that, since my Dad hardly
ever
> used his car, would he give his to my brother, who couldn't
> afford to buy a new one at the moment. Instead of seing this
as
> having his car taken away, our Dad saw it as his giving a
helping
> hand to his son. It worked well.
> snip ....
>> Alan
Hey Alan - My brother and I used your example above and Dad
was eager to
help his son. I'm so happy he was positive about this. We've kept
his car
out of sight for the whole two weeks since the "run-away"
and I guess he's
somehow resigned to not driving again. He has always had a giving
heart and
this was the perfect approach. The only thing he asked my brother
in
return was to be taken on country drives. Of course we will make
sure he
gets to do that any time he wishes. Now we've got to get the paperwork
done
so that he doesn't have a sudden change of heart.
Thanks again for a very helpful idea. We wanted to keep his
mini van
because its so easy for him to get in and out of but not if it
was a
constant reminder of his being prohibited from driving. - Barbara
H
Reply Reply to author Forward Rate this post: Text for clearing
space
From: "Evelyn"
Date: Tue, 12 Jun 2007 11:03:20 -0400
Local: Tues, Jun 12 2007 11:03 am
Subject: Re: New Member Here - Greetings!
It is wonderful to hear of a good outcome of some iffy situation!
Thanks for sharing it here.
--
Best Regards,
Evelyn
From: "Alan"
Date: Tue, 12 Jun 2007 21:53:56 -0000
Local: Tues, Jun 12 2007 5:53 pm
Subject: Re: New Member Here - Greetings!
On Jun 11, 12:28 am, NO_SPAM_TO_dphar...@gci.net (Dennis P. Harris)
wrote:
> ... as soon as they have
> an opening, do as i suggested in another thread --- take
him for
> a drive while you move him, and deliver him to the new place,
and
> then don't visit for a week or two. ...
That is what has to be done at a certain point in the disease
process, but it may be that Barbara's father hasn't gone that
far
yet.
My Dad actually checked himself into assisted living. My Mom
had
died several years before with advanced AD. He saw signs of it
developing in himself. He sold his condo and moved into AL on
his own accord. My brother and I were seeing early signs of
problems, but they were still very early and he had been living
independently with considerable success.
Barbara's Dad might still be rational enough to see the
advantages of AL - no more cooking and cleaning, lots of
companionship from same aged folks, activities, three decent
meals a day, a nice facility, help always at hand if needed. It
would be ideal if he chose that for himself.
Of course it has to be a nice place to be attractive in that
way
- but who would want to move a parent into a place that isn't
nice?
There are lots of Assisted Living facilities that have the
ability to help both non-demented and demented residents. If a
person is able to function at a reasonable state - which
Barbara's Dad may still be able to do, he can move into such a
place and be in the non-demented section unless and until he
deteriorates badly. It's a more desirable option than a locked
down AD unit where all the folks have serious trouble.
Alan
From: Mary_Gor
Date: Tue, 12 Jun 2007 16:52:00 -0700
Subject: Re: New Member Here - Greetings!
At one point early in the illness we took my mother in law to
check
out an assisted living place very near where her sister lived.
It was
just a beautiful place - and it offered graduated care and many
options and services, from your own independent apartment right
the
way to a heavy care nursing home. My mother in law could afford
it,
it was very convenient to her sole surviving sister whom she was
very
close to, near all kinds of amenities, never mind what was offered
"in
house". Heck, after the tour, I was ready to go live there
myself.
My mother in law actually rejected it as being "too nice",
if you can
believe it. Argh!!
M.
From: "Alan"
Date: Wed, 13 Jun 2007 01:11:14 -0000
Local: Tues, Jun 12 2007 9:11 pm
Subject: Re: New Member Here - Greetings!
On Jun 12, 7:52 pm, Mary_Gor...@tvo.org wrote:
> ...
> My mother in law actually rejected it as being "too
nice", if you can
> believe it. Argh!!
Ouch!
From: "Barbara H"
Date: Wed, 13 Jun 2007 11:49:07 -0500
Local: Wed, Jun 13 2007 12:49 pm
Subject: Re: New Member Here - Greetings!
Hi Alan, Dennis & all
I know I'm not very experienced and probably being overly hopeful
right now.
But, I do think we have some time with Dad. Not a lot but hopefully
enough
that he will settle into his old routine and be safe and comfortable
for now
in his own home. Maybe just a month or so but that will help us
get
organized. I would love to have a year or more and maybe that
will happen.
He knows what he did but he doesn't understand the danger he was
in.
I had home health care in this morning for an evaluation so
I'm anxious to
hear their recommendations. He was very hospitable and even charming
with
the nurse they sent. His health review was quite good as he has
very few
health problems and takes very little medication. His bp was 116
over 64.
That seemed to impress the nurse a lot!
He actually signed the car over to my brother this morning
so that hurdle
has been cleared. We discussed getting proper power of attorney
with him
and he was very agreeable. Dad has a grandson he helped put through
law
school and is just starting his career as an attorney so he has
helped Dad
know how important our help will be with these kinds of documents.
So
that's headed the right direction too.
I'm feeling pretty good right now although I know things can
turn on a dime.
I'll probably never feel completely at ease again but I do finally
feel like
I have time enough to implement the very helpful advice given
here and to
accomplish these things without a dark cloud hanging over us.
It's still a
cloud but it's not so ominous as before.
Thanks again, you're such a good group. - Barbara H
From: "Alan"
Date: Wed, 13 Jun 2007 13:36:51 -0400
Local: Wed, Jun 13 2007 1:36 pm
Subject: Re: New Member Here - Greetings!
"Barbara H" <bhenderso...@cox.net> wrote in message
news:k2Vbi.98151$vE1.30334@newsfe24.lga...
> I'm feeling pretty good right now although I know things
can turn on a dime. I'll
> probably never feel completely at ease again but I do finally
feel like I have time
> enough to implement the very helpful advice given here and
to accomplish these things
> without a dark cloud hanging over us. It's still a cloud
but it's not so ominous as
> before.
> Thanks again, you're such a good group. - Barbara H
I'm really glad things are under control, and very glad we
could help.
Best of luck to all.
Alan
From: "Evelyn"
Date: Wed, 13 Jun 2007 13:41:48 -0400
Local: Wed, Jun 13 2007 1:41 pm
Subject: Re: New Member Here - Greetings!
Wow, it is so good to hear of things going in a positive direction.
It is
good that your family is close, and to be so cooperative and helpful
with
one another.
--
Best Regards,
Evelyn
From: "Dennis"
Date: Thu, 14 Jun 2007 13:25:03 -0800
Local: Thurs, Jun 14 2007 5:25 pm
Subject: Re: New Member Here - Greetings!
On Wed, 13 Jun 2007 11:49:07 -0500 in alt.support.alzheimers,
"Barbara H" <bhenderso...@cox.net> wrote:
> I had home health care in this morning for an evaluation
so I'm anxious to
> hear their recommendations. He was very hospitable and even
charming with
> the nurse they sent. His health review was quite good as
he has very few
> health problems and takes very little medication. His bp
was 116 over 64.
> That seemed to impress the nurse a lot!
but if he hasn't had a full neuro-psych evaluation, you need
to
have that done ASAP once you have the durable POA so that his
docs will discuss his condition with you. if he has AD, there
are meds that can slow the deterioration. if it's due to some
other cause, and it's treatable, you need to know that too.
in addition, the cognitive skills assessment can alert you
to
deficits that could put him in danger, and give you a better idea
as to whether or how long he should be left alone.
i'm glad to see that he's being cooperative, and that you were
able to deal with the car problem so quickly.
be sure to start looking for the next place he'll be living
right
away, though, and get him on the waiting list without worrying
about his approval.
one tip --- while it's great that his grandson is starting
to
practice law, your family really needs to have an attorney
experienced in your state's elder law if you have to start
dealing with anything to do with his assets, since there are
lookback periods for medicaid for institutional care once his
assets are spent down.
for stuff like a living will and durable powers of attorney,
those are often set in state statute (in my state, the actual
forms, with checkboxes, are part of the law).
From: "Barbara H"
Date: Thu, 14 Jun 2007 17:48:38 -0500
Local: Thurs, Jun 14 2007 6:48 pm
Subject: Re: New Member Here - Greetings!
"Dennis P. Harris" <NO_SPAM_TO_dphar...@gci.net>
wrote in message
news:iob373hmlqno340ogv0seiut7r77n0o5m3@4ax.com...
<snip>>
> but if he hasn't had a full neuro-psych evaluation, you
need to
> have that done ASAP once you have the durable POA so that
his
> docs will discuss his condition with you. if he has AD, there
> are meds that can slow the deterioration. if it's due to
some
> other cause, and it's treatable, you need to know that too.
> in addition, the cognitive skills assessment can alert
you to
> deficits that could put him in danger, and give you a better
idea
> as to whether or how long he should be left alone.
> i'm glad to see that he's being cooperative, and that
you were
> able to deal with the car problem so quickly.
Hi Dennis - I certainly hope and plan to do all of these things
to whatever
extent is needed. Dad has agreed to both types of POA's and has
from the
beginning always signed a release for the doctor to talk to his
children.
Now that this has taken a turn for the worse though I realize
how important
POA is .... both medically and financially. I'm glad I came here
and
learned so much so quickly.
> be sure to start looking for the next place he'll be living
right
> away, though, and get him on the waiting list without worrying
> about his approval.
We're all still a little shell shocked but so much more hopeful
than before
because he has been so cooperative. I do plan to start visiting
local
centers as soon as I can. We would love to get him in to our Veteran's
center here. It's brand new and is very nice. I know two people
who have
had parents there and they were both happy. That's where I plan
to start
since he is from that "Greatest Generation". We'll find
the right place
though. I know it.
> one tip --- while it's great that his grandson is starting
to
> practice law, your family really needs to have an attorney
> experienced in your state's elder law if you have to start
> dealing with anything to do with his assets, since there
are
> lookback periods for medicaid for institutional care once
his
> assets are spent down.
We would never consider using his grandson as our attorney
in this matter.
Much too close to the situation and he is now practicing in another
state.
It's just nice that he is making good recommendations to his Grandfather
and
he has helped us find three local attorneys who are all qualified
in elder
law. We think we've narrowed it down and by the weekend will have
that
process in motion. Without his input I think my Dad would have
balked at
the idea of needing to assign POA. I know that for right now he
trusts us
and he understands that he won't have to worry about taking care
of any kind
of business or paperwork at all. That's one of his big fears.
> for stuff like a living will and durable powers of attorney,
> those are often set in state statute (in my state, the actual
> forms, with checkboxes, are part of the law).
The forms you refer to sound very similar to what we've been
provided for
review. Lots of boxes to check and options to accept or reject.
State
specific of course and all very proper. I'll be so glad to get
that piece
of this action in place.
Thanks again for your helpful suggestions and tips.
Barbara H
From: "Dennis"
Date: Thu, 14 Jun 2007 15:39:37 -0800
Local: Thurs, Jun 14 2007 7:39 pm
Subject: Re: New Member Here - Greetings!
On Thu, 14 Jun 2007 17:48:38 -0500 in alt.support.alzheimers,
"Barbara H" <bhenderso...@cox.net> wrote:
> The forms you refer to sound very similar to what we've been
provided for
> review. Lots of boxes to check and options to accept or reject.
State
> specific of course and all very proper.
the nice thing about the ones for our state (which i believe
is
based on a "model law" put together by one of the interstate
law
compacts) is that the boxes prompt you for almost every
possibility. this can give you an opportunity to discuss those
issues with your LO while you are filling out the form, so they
can express themselves as clearly as possible.
my mother, who had been caregiver for her mother and two aunts
*before* there were living wills, had definite ideas about
end-of-life issues (no resuscitation, no hydration, no tube
feeding). when she woke up in the hospital with a hydration drip
in her arm, she ordered us to get rid of it, call hospice, take
her home, and obey her living will so that she could die at home
with only palliative care.
of course, we obeyed.
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