Dear Leah,

Yours is the kind of post that really strikes home.   All of us here have
been through this, and even though you think you can't do it, somehow you
find the strength, and do the next thing.

There is a lot of help out there for you, if you know where to look.   First
of all you should try and get yourself a copy of "The 36 Hour Day" which is
extremely helpful.

You and your siblings are going to have to try and find a way to pull
together and make some serious decisions at some point.   You all have an
interest in your mother's well being, now is the time to find a way to work
together and at least to choose one of you that can take some
responsibility.

Does your mother have a signed Power of Attorney?   Health care Proxy?
Will?  These things are important to deal with now, because you have no idea
how her illness will progress.   For some it is years and for others changes
can occur quickly.    It makes sense to have a plan of some kind in place in
case it does.

This newsgroup is a wonderful resource, and in my case, I have no idea how I
would have ever managed without it.   But you should also look into
alzheimer support groups locally.   You are not alone, there are people all
over who are dealing with the same issues you face.

There are lots of options other than placing your mother in a nursing home
right away.... in our case, we bought a bigger house, my husband retired
early, and we took my mother in law to live with us for several years until
her illness advanced to the degree that she needed professional nursing
care.   During the time she stayed with us we sent her to an adult daycare
center in the area and had backup people to granny-sit for us as well.

If none of these things is an option for your circumstances, there are
facilities that have graduated care ...such as starting the person out in an
assisted living facility, which later will transfer the person to another
wing which is a nursing home when they actually come to the place where they
need it.

If your mother is already receiving medicaid, a large part of the battle is
already won.   Does she have a caseworker of any kind?    Is there an
"Office for the Aging" in your county?   You need to get some help.
Contact the Alzheimers society too, in your area.   They may be a great
resource.

Believe me, you have my deepest sympathy, and I do know what you are going
through and what you are facing.    There are tough decisions ahead, but at
least you have a real diagnosis to work with.  Many people don't have even
that when they start trying to help a loved one who is showing signs of
forgetfulness or odd behavior.

Good luck to you....!   And don't underestimate your own strength.   You say
you love your mother..... that is the thing that will help you the most to
work with this situation.

Leah...  Everybody here can understand what you're going through.  But
let me come right out and say this first.  You said you feel like
"killing yourself".

DON'T DO IT.  DON'T EVEN THINK ABOUT IT.

It's always makes it feel worse when you love that person so much and
you're seeing this happen.  All of a sudden, here's somebody you "kind
of" felt would always be there, and all of a sudden, the end is in
sight for them and you can't imagine what it would/will be like when
they're gone.  You wonder how it'll play out.

Evelyn gave you a bunch of great advice.

One of the things I found helped us (my Mother's dementia was probably
due to mini-strokes) is having my Mother move in with us.  It was a
load off our minds knowing she would at least be with us in the
evenings/nights.  We then spoke with a social worker who directed us to
a place that was privately run and was able to provide "companions"
during the day to do things with my Mother, feed her, take her to
appointments, etc., for a very reasonable price.  The lady who ran it
started it after her own husband died from Alzheimers.  When my Mother
began to suffer breathing problems and had to go to the hospital
(unrelated to the dementia), whenever she would wake up, her daytime
caregiver was there.  It made it much less frightening for her.

I don't know what we'd have ever done without that lady.  I've got no
idea.

I know it's sad, but this is one of those bad things that many of us
have no choice but to go through.  Just keep up the good work.  The
fact that you care means a lot.  Not everybody who suffers from
Alzheimers is so lucky to have a child like you.

Charles R. Whealton
Charles Whealton @ pleasedontspam.com

Hi Leah....I'm sure this is so really overwhelming.  My mother is starting
her 14th year of dementia and is now in independent assisted living.   She
still has abilities that usually go by the wayside long before now.   Evelyn
gave you excellent advice.  These things have a way of working out.  Maybe
not the way you would like but you do what you have to do.  Lets see, I
think I've covered all the clichés but seriously we all know how difficult
this illness can be.  Take care of yourself first and then deal with your
mother.   Social services sounds like a good place to start.  One thing is
for sure--you're not alone.  BTW I googled assisted living and Medicaid in
New York and got the following link.   It looks like it might help
http://www.health.state.ny.us/health_care/medicaid/program/longterm/
Good luck....June

Hi Leah,

I'm so sorry that your mother has been diagnosed with AD. It isn't
fair, and no one deserves this, not her, not you and your sibs. Its too
bad that the doctor accidentally gave her some information when you
didn't want her told - but many doctors would have taken the stance
that if she is still competent to understand the diagnosis, she should
be told. It is an ethical dilemna.

However, having said that, its reality, can't change any of it. So lets
talk about what is real, with no illusions.

She cannot live alone. She is probably not safe living on her own even
now. It is one of those paradoxes that people are always, always MUCH
more impaired cognitively than you can detect from social interactions
- and it is even worse for family since you are going to be thrown off
by your love for her, and want to give her the benefit of the doubt.
You will want to think she is better than she is. She is going to get
worse and worse, whether quickly and relentlessly or slowly and
steadily, or in fits and starts,  and will need supervision and support
24/7. If she is already getting lost, that means her ability to
recognize people, places and objects is already sliding - its not just
a memory issue. A home aide might help (if you can get her to stop
firing them....which might be helped by YOU hiring them so she can't
dismiss them, since she really isn't competent enough to have real
insight into her own limitations). However, an aide on a daily basis is
not going to protect her during the hours the aide is not there, when
she is left alone with appliances, medications, cleansers, utensils,
when she might go out of her apartment and get lost, or let strangers
into her home, or do something completely whacky (like my mother in law
unscrewing all the lightbulbs in her apartment because she couldn't
figure out how to turn the TV off). Her judgement and ability to reason
is impaired, as is her emotional control. If something goes wrong, like
a fire, a flood, a black out - will she know how to react appropriately
and safely?

Its depressing, but its not desperate. You will feel better when you
stop trying to wish this away and just deal with it - for me, anyway,
the worst part is always when I feel like a trapped animal because I
know what I have to do but I really don't want to do it, and am engaged
in wishing everything was different. That is the time you feel torn
apart. Once you stop pretending things away and make some decisions you
can act on, it may still be painful, but you won't be as tortured. You
will also feel MUCH better when you know she is safe and secure and you
don't have to worry so much about whether she is eating, bathing, etc.
etc.

Your options for her are very limited. Even if you get her an aide
she'll let stay, as I said, 8 hours a day isn't going to cut it, nor is
12. She needs someone around 24/7. So, any aide is a temporary stopgap
until you come up with another plan.

One of you can take her to live with you, and if that is not possible
at all (and its sounds like neither you nor your sibs are in
circumstances to do so, so don't waste any more angst on that one)  she
will need an assisted living facility. So that makes the way fairly
simple.

Between the four of you, get your skates on, call the local Alzheimer's
Association, seniors support agencies, geriatric clinics, social
workers, whatever the heck is in your area, and do your research on
what is available to a person with medicaid only, and no personal
assets, from assisted living, day care, specialized dementia care
facilitiies etc. etc.  You don't know what is out there until you
really scour the scene. Book a visit with an eldercare lawyer to
discuss the ins and outs of medicaid and what she might be eligible
for.

Once you know what is out there, pick the one that you think is best
(or the one that is the least objectionable, knowing you aren't going
to love any of the choices). Depending on what is out there, if the
choices are limited, convenient geography may not be a selection
criterion you can insist on. Get her name on the waiting lists (and if
it is desirable at all, there are usually waiting lists), and then plan
to move her when a spot comes up.

You absolutely must cultivate a pessimistic outlook when it comes to
planning for the care of anyone with progressive dementia in that you
have to plan for worst case, so you are ready for anything. Then if
things go slower, you can be pleasantly surprised and relieved. Being
too optimistic means delaying having solid plans in place, and then you
get plunged into crisis when there is unexpected deterioration. You
must make sure you have all the legal instruments in place to look
after her (powers of attorney for financial and medical decisions),
that her will is iin order, and that someone trusted has a detailed
knowledge of all her assets and where they are.

When we put my MIL's name on a waiting list for the first time, we
never dreamed that within the year she would absolutely need the
placement.

You can't imagine having to place your mother, but I doubt you also
never thought she'd get Alzheimer's, and its even harder to imagine
what will happen to her as a consequence of the disease.

Hang in, hang in, hang in. And go find out what the options are stat.
Even that action will make you feel better since it will help you to
get your head around what needs to happen next.

I am so, so, sorry you have to travel this road.

M.