broruss@hotmail.com (rev. russell

Hello everyone, I have been lurking awhile. My mom is 65 and is
suffering from dementia, we are days away from an official diagnosis
from a reputable big city clinic, but I am 90% certain it's AD. She
lives alone at home in a small town about 80 mins from me. I spend a
day at her house each week, paying all her bills, doing basic
housework, laundry, etc. Trying to catch up on all the many undone
things. Mom does nothing but watch TV, sleep, and go get fast food and
drive around (she still drives). Just in the past few weeks, she has
started to bathe and shampoo less and less frequently. Her memory is
in rapid decline. She has an older brother and sister in law who check
in on her a few times a week too, but they don't even go inside the
house, and don't yet grasp the seriousness of the situation despite
all the info I have shared with them. Mom's other siblings have way
too many problems of their own to deal with, and are friendly but
uninvolved. I have an older brother but he and his wife conveniently
decided it was time to take a job offer in Europe when I first told
him (almost 2 yrs ago now) that I thought Mom might have AD. At the
rate she is declining Mom will probably need to be in assisted living
within a year, but she is in denial and unable to grasp fully what is
happening to her. Mom told me years ago, while still healthy and
lucid, that if she ever became unable to care for herself, that I was
to place her in a good home and not try to care for her myself. I
can't move to Mom's town because I couldn't make a living, there are
no decent jobs there and my wife would refuse to go anyway, and I
would never bring Mom to the big city and put her in some third-world
home here in the crime capital of the U.S., away from her siblings. Do
most people at this point move their parent in with them and care for
them at home? I love my mom dearly, we have always been good friends,
and I want the best for her. But that idea is incomprehensible to me.
I guess I am trying to get a feel for what most people do at this
point? I frankly don't see how anyone does the caregiving themselves
past the intermediate stages of AD... I am completely exhausted and
depressed after just a few hours with her. Maybe i am just looking for
someone to tell me it's OK to start talking to assisted living centers
and trying to hatch a plan to get her to move into one. Or maybe I am
just looking for a sense of what the "average" loving and caring child
of an AD victim does at this point. Anyone have any feedback? Bless
you all, you are amazing folks.. Russell (by the way I am not a
reverend, I am an agnostic.. my email identity was set up on a lark
and the "rev" is stricly tongue-in-cheek). So please just call me
Russell.

tumbleweed

<snip>

Seems to me that people like Evelyn and the others who care in their own
homes are in a small minority of siblings who are able to do that, for most
of us its just not an option, if only because a job is going to take you out
of the house, and come a certain stage they cant be left alone.

Russell, at the moment I am working on my mother to persuade her that she
should put my father in a home (Or to be more accurate, not retrieve him
from the one he's in at the moment for respite care, because its gotten too
much for her). he is going to have to go in one anyway, seems no point
wrecking her health for a few more months at home, and I left in above the
bit you wrote about stress/depression.

I'd say for nearly everyone in this situation, the time comes when they have
to go into a home, dont feel guilty about it, its just a fact, besides its
what your mother asked for when she was able to make rational decisions.

AS much as she is rational now, get the stuff done like Power OF Attorney
and see if you can get her to look at homes.

--
Tumbleweed

Remove theobvious before replying (but no email reply necessary to
newsgroups)

niederlandisch@monmouth.com (the cranky

First you have to get a definite diagnosis. When you have that others
may take it more seriously. If you don't feel capable about taking
care of her now, you'd better find a good health care center with an
Alzheimer's Unit. One move is better than many.

She needs some medications. Maybe Aricept to help slow the progress
and an anti depressant.. Depression may be the cause of so much
sleeping.

You really need to read up on Alzheimer's wherever you can. Get 'The
36 Hour Day' put out by Johns Hopkins Hospital.
You simply cannot imagine what this disease entails.

Take away the car keys! Take away the car! Disable the car! She is
not capable of making driving decisions!

And Russell, a little prayer wouldn't hurt.

Bless you too Rev

The Cranky Genee


On 9 Sep 2003 08:41:51 -0700, broruss@hotmail.com (Rev. Russell Guinn)


.. Anyone have any feedback? Bless

broruss@hotmail.com (rev. russell

Thanks, Genee. We will have a diagnosis a week from Thurs. You're
right, that will be a huge wake up call to mom's siblings. My plan has
been to move her to an assisted living place, there is a (supposedly)
good one in her town, with mainly AD patients. But it sounds like you
are describing a hospital-based situation? I am not sure.

I am confident the experts that are about to diagnose her will also
prescribe meds. I am hoping she may be one of the lucky few that gets
more than just a six-month reprieve from her decline from Aricept or
one of the other highly touted and exciting new pharmaceutical
products. I am sure you are right about the depression making her want
to do nothing but sleep. She will be the first to tell you that! I
hope they find the right SSRI to keep her happy and calm.

I have the 36 hour day book, I have skimmed it and tried not to
contemplate suicide afterward. I knew for sure after reading it that I
would be unable to care for mom myself. I am sure the book will be
valuable as well descend further into hell together.

I am afraid taking away the car keys is indeed not far off. The docs
may advise that when we see them. I shudder to think how mom is going
to react to that decision. If you think she's depressed now, wait til
we take that step!

Regarding your advice to engage in a little prayer, I used to get
similar advice from my brother, who is in the ministry with his wife.
When he and his wife learned some time back (from me) that mom might
have AD, they decided that Jesus wanted them to take an offer made by
their ministry to take an office position in Europe. (That "job offer"
I mentioned previously was a ministry position). They will be there at
least for the next three years, with only one planned visit home, and
they won't commit to a date for that one planned visit.

Maybe if I pray hard enough, Jesus will advise me to skip the country
as well. Or better yet, I imagine I could have also prayed a few years
ago that mom would not develop AD. Or if I really had faith, I could
lay hands on her and pray for healing. I mean, if we are going to
believe in the supernatural, let's take it all the way. Let's go
full-throttle, King James Version with it, and walk on serpents and
drink poison.

Seriously, though, these days zen meditation provides for me what
prayer used to provide in my bible-totin' days, without the unpleasant
side effect of broken (biblical) promises, false hopes and financial
exploitation. But having said that, and I hope not too harshly... I do
know that each of us has our own spiritual (or non-spiritual) path,
our own strategy for finding reasons to go on, and I try to respect
that. And I sincerely appreciate your input and everyone else's too!

When I said bless you, what my heart was saying was this: May your
fellow man bless you... because that's where it's gonna have to come
from if it's gonna happen.

Russ

kalinda

Russell,

Everyone does what they have to. You shouldn't feel guilty about
finding a nice assisted living (maybe 1/2 between where you live and
where her siblings live). Start her now, so hopefully she is still in a
place that she can comprehend the process and feel comfortable. And
every person with AD, every family with that person, and every set of
friends is very different, so you just can't compare youself to anyone
else. You just have to do what is right for you and your family and most
of all, your mom! (I tell you closer to you, because it will be you who
needs to watch the staff and the facility and make sure THEY are doing
their job! And you need to be closer in case of emergencies, what
happens if mom falls and goes to the hospital? All AD patients really
need someone by their bed during hospital admissions!)

I am sure that she didn't want to burden you, or have you deal with all
the very intimate personal issues that come up with AD. Maybe that
thought to her was horrifying! You need to respect her wishes, and find
her a good home that works for her and everyone.

And give your brother a break. 2 years is a long time to have made a
decision to affect today, yes you told him, but does he REALLY know what
having AD means? I bet not. (AND you did mention you don't have an
official diagnosis yet) Some people, you must realize, just can't deal
with it. They just get torn up inside thinking about what is happening.
Your a stronger person in a different fashion. So be strong, do what
your mom needs, and f****ve your brother. Ask him to do something weekly
from where he is to brighten her life, like sending her things from
Europe, letters, gifts, things that will occupy her time when she is
placed.

This is a hard road, there is NO question about that. So make sure you
reach out to the Alzheimers Association and find some support for
yourself. Learn about the process the disease will take you through.
And keep asking questions here, the people on this board have a wide
range of experience to draw from and they are all very kind and quick to
lend the support you will undoubtedly need!


Kalinda

evelyn ruut

Dear Russ,

I have studied zen too, with an incredible zen master I will never forget!
At the present my teacher is a tibetan Lama, who is a highly respected
author and teacher. I too became disheartened with religions "of the book"
(but I do not have any disrespect for those who find comfort there.) It is
said that there are 84,000 different teachings in order to accommodate all
the different kinds of people.

You might like to read a bit at a couple of these links (at the bottom)
where I find a great deal of comfort myself.

The situation we are all in here definitely calls for some kind of spiritual
support and it can come from many places. It need not necessarily be from
a traditional judeo christian slant. For those of us who have moved on
spiritually into other traditions, philosophical comfort from a non-dogmatic
standpoint is often the best. You will notice I often quote buddhist
sources here, as they are applicable to all people no matter what religion
they follow. My signature line is from a tibetan teacher, though it is
very zen-friendly :-)

The links: http://www.fpmt.org (The Dalai Lama's organization)
http://www.kagyu.org (the tradition I follow)
http://www.accesstoinsight.org (the entire Pali Canon
online)

--

Evelyn

"Since everything is but an apparition, perfect in being what it is, having
nothing to do with good or bad, acceptance or rejection, one may well burst
into laughter." -Longchenpa

delinda@clearsail.net

Russell - Reading your message brings back alot of memories of when my
mom was first diagnosed with Alz. And from what you have described,
it certainly sounds like your mom may indeed have it. When you say
that you will have a diagnosis next week -- we were never lucky enough
to get a "firm diagnosis" until very, very late in the process. Some
docs thought (wrongly) that my mom's dementia was depression-induced.
So it just became a process of elimination.

What will need to happen - rather quickly - is a role reversal --
i.e., you becoming more of the parent and she becoming more of the
child. For example, on the car issue -- rather than "reasoning" with
her about the need to stop driving -- simply take the keys away (she
will likely think she has misplaced them). Or disable the car
battery. While it really hurts to think that you have to treat a
parent in this manner -- this is not a reasonable, rationale disease,
where you can calmly reason with the person about what is best needed.
YOU need to make the decisions on your MOM's behalf. It is for her
own good, even if she doesn't realize it.

When my mom started becoming incontinent, my sister struggled with how
we were going to get her to start wearing Depends instead of
underwear. We decided to take all of her underwear out of her
dresser drawer, and replace them with the brief-style Depends that
look like underwear. No struggle, no reasoning. We just made the
choice, and Mom accepted it. (We were shocked).

But those are small decisions compared to the idea of moving your mom
into assisted living. In our case, the decision was escalated by the
untimely death of my father. In your case, perhaps you will want to
check out a local assisted living facility (preferably one that
specializes in Alzheimer's), and get your mom signed up for their
"adult day care program." Just a way to introduce her to the people
there without making The Big Move. Once she meets a few friends
there and it is familiar to her, then you can talk about moving her
into there.

And as far as taking care of your mom at home -- Unless you can quit
your job and devote full-time care to it - or pay for a full-time
sitter - I don't recommend it. As difficult as it was to put my mom
into an Alzheimer's facility, we soon realized that these folks were
much better able to deal with the many aspects of this disease that we
didn't know how to handle. (Another reason I highly recommend
finding a facility that SPECIALIZES in dementia -- not just an
assisted living facilty that has a large number of Alz. patients.
My mom is in a place called "The Haven" -- there are also places
called "Clare Bridge homes", etc. They are technically still
considered assisted living -- but they focus soley on Alz. We have
found a WORLD of difference in the level of care in these places.
They UNDERSTAND this disease!!)

Do you have a local Alzheimer's support group in your area? (Check
http://www.alz.org to find one). It will be important to find folks that
can you can bounce ideas off of and get support and other
recommendations from.

I hope this helps! Feel free to talk through more issues with this
group!!

Dee

tumbleweed

<snip>

Three alternatives that save someone's elses life, and your conscience.

1) take the car away, sell it, tell her it had a problem and will be back
next week. Of course, it will always be next week.I'm sure you can easily
arrange for the car not to start by removing a connection or two.

2) have your doctor report her to the licensing authorities. I'd have
thought he wouldnt want to be in a law suit by the relatives of someone who
was killed by her after he knew she was unfit to drive.

3)Sell it, (she probably wont be up to buying another one) and tell her her
she isnt capable of driving.

Please dont let her kill someone. We took option (3) with my father, in
retrospect (1) might have been better, it would have lead to less argument,
and if I had the chance again thats what I'd do. I'd even arrange for a
'mechanic' to come round, and 'decide' it needs to be taken away.

--
Tumbleweed

Remove theobvious before replying (but no email reply necessary to
newsgroups)

darryl

Fortunately(?) my Dad got a speeding ticket before his sudden
declie--the doctors told us 2 years ago that they would submit his
name to the Ministry to have his liscense suspended or renewal
cancelled but it never happened.

Since he liked saving money and could car-pool, we convinced him to
stop driving.

To quickly prevent your loved one from driving, have someone remove
the battery cables--it's an easy fix. Just hope that he/she doesn't
have a friend that's good with cars

Darryl.

broruss@hotmail.com (rev. russell

Wow! excellent resources... thanks Evelyn.
Russell