Thanks re: sudden decline

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mollyg@darkwing.uoregon.edu - 05 Mar 2005 05:05 GMT

Thanks for all your helpful information and sharing your experiences.
Her doctor seemed so focused on adjusting her medications, that I got
the impression he really thought that was the problem. Since my mom
was there I didn't feel comfortable asking about his prognosis for some
recovery. My brother has relieved me and after 24hours away I've
gained some perspective. It would be a miracle if she were to recover
significantly. I know my mother can no longer be alone, so my family
has started the process of looking for a residential facility. In the
meantime, someone is always with her.

Do any of you have experiences with residential facilities? My family
really has no choice. We all have to work and my Mom has a very
limited income. Currently we're all pitching in to pay for some
in-home care, but we won't be able to afford that for long and it
really doesn't cover my working hours. We also want to get Mom in as
private pay and then at some point she'll have to use medicaid.

Most of the residential facilities I have looked at are very
depressing. Philosophies and behavior management seem ok, but
generally the facilities were grungy, smelled, were not welcoming or
comfortable looking, and the rooms were so small. My mom is such a
neat nik I don't think she would do well in that environment. I had
hoped the Alzheimer's would temper her need for clean, but she seems
even more particular.

I did find one facility I truely loved, that takes medicaid. Of course
there is a waiting list. However this facility had a terrible shooting
about a year ago. A resident shot another resident, his wife, and then
himself after an ongoing feud. But when I made an unplanned visit, the
place had a happy bustle to it, smelled good and I couldn't always tell
who was a resident and who was a visitor. The rooms were really nice,
spacious and felt like bedrooms. It seems like it would be a nice
retreat for my Mom who can be shy.

Of course I'm worried about supervision. Also the place is big it
might be overwhelming to my mother.... to walk out of her bedroom into
a wide open hallway.

I appreciate the opportunity to ramble.

Molly

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Dennis P. Harris - 05 Mar 2005 05:36 GMT

> Do any of you have experiences with residential facilities? My family
> really has no choice. We all have to work and my Mom has a very
> limited income. Currently we're all pitching in to pay for some
> in-home care, but we won't be able to afford that for long and it
> really doesn't cover my working hours. We also want to get Mom in as
> private pay and then at some point she'll have to use medicaid.

unfortunately the place in oregon that i posted about a few days
ago apparently doesn't take medicaid (for good reason --- the
gummint is always screwing around with funding, and in some
states docs, hospitals, and facilities lose money at the current
rates).

pray that you can get her on medicaid quickly, before the right
wingnuts in charge in washington slash and burn the medicaid
budget to pay for tax cuts for the bleepin' rich.

you should call your local alzheimer's association office and
find out if they have any recommendations --- you find the phone
number at www.alz.org . info on care facilities is posted on a
government website, and i'm sure the FAQ has pointers to it, but
i don't have the FAQ bookmarked on this computer. your state
office of the aging should also have in information
clearinghouse.

where in oregon are you? i have friends with parents in
facilities down there and could ask them.

our family had good luck with small private group homes, but they
didn't provide complex nursing care and it was private pay.

this can be a lesson for others reading the posts in this group.
please don't think i'm putting you down, because many times these
crises happen suddenly, but what happened to you is a good reason
why it pays to check out possible facilities several years before
you might possibly need them. i was fortunate that my mother had
made her choice 20 years in advance and was on the waiting list,
though she never quite made it there before she died.

i know that neither us nor our loved ones like to think about the
possibility of long term care, but it's far better to talk about
it as a "remote possibility" 5 or 10 years before you think that
it may be needed. having it settled in advance makes it easier,
especially if they have a waiting list.

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mollyg@darkwing.uoregon.edu - 05 Mar 2005 19:01 GMT

I also hope others can gain some insight from this dilemma and I don't
think you're putting me down, however everybody's circumstances are
different. My mother, 84, was diagnosed with Alz less than a year ago.
My family immediately went into hyperdrive researching facilities, in
home care, and financial assistance. We found ourself between a rock
and a hard place. We wanted to respect our mother's wishes that she
not be placed in a residential care facility, not even assisted living.
And to be honest, we could not afford assisted living and hope to
support her when she truely needed 24/7 care. Medicaid did an
assessment and found her not to be eligible for assistance because she
was independent in her own home. Until last week most people who met
my mom could not believe that she had Alzheimer's. Of course as her
main caregiver, seeing her everyday, I certainly knew my mother was not
functioning as she used to. Essentially everybody from ALZ org. to
medicaid, to facilities told us you cannot plan for this disease and we
would have to wait for a crisis. I think this is probably because we
will be dependent on medicaid. If we were private pay, we would have
approached the problem much differently.

Believe me, at this time I am very concerned about the state of
Medicaid and pray we can get her situated before the sh.t hits the fan.
My mother has ssi and a government pension and when she retired in the
early 80's she thought she would have enough money to not burden her
children or society. Sadly, it has turned out not to be the case.

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Tumbleweed - 05 Mar 2005 20:18 GMT

>I also hope others can gain some insight from this dilemma and I don't
> think you're putting me down, however everybody's circumstances are
[quoted text clipped - 3 lines]
> and a hard place. We wanted to respect our mother's wishes that she
> not be placed in a residential care facility, not even assisted living.

What was the alternative she gave? I suspect she wasnt being realistic
if she thought you could care for her 24x365 by yourselves.

> And to be honest, we could not afford assisted living and hope to
> support her when she truely needed 24/7 care.

A lot easier said than done, just ask here :-(
And probably not the best option anyway.

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