Re: PARKINSN Digest - 13 Jan 1998 to 14 Jan 1998 - Special issue

[Margaret Green <glenwyn@xxxxxxxxxxxx>]

> Now for the problem...the care manager (that's an oxymoron...) on his
> case, is pushing us to seek a nursing home placement.

  My husband was at about the same stage when a social worker and rehab doctor 
at the urging of a
Parkinson's program person "beat on" me (to use the modern term) to put him in 
a nursing home.
Coincidentally it was our 30th anniversary and he was standing up and 
transferring with help. We
argued at the nurses desk in the hospital for half an hour and I was yelling at 
them before they were
done. Their argument was he had "so many neuological problems that you can't 
possibly take care of
him at home." This same person did not give me basic home care information. (I 
didn't even know how
much having a hospital bed could save my back) When I called about medical 
symptoms that needed the
doctor's attention, I was told that I wasn't taking care of him properly before 
I was transferred to
the doctor. When I asked questions, I was told that the caregiver's group 
couldn't help me. When I
asked about day care for one day a week while I was taking a college course, I 
was told that he
couldn't go to day care because he needed help going to the bathroom. She was 
trying to force me to
do it.  Thank goodness I had a very nice visiting nurse with home care. You can 
get a lot of
information about care from a good nurse and/or health aide. I also talked to 
someone else who had
kept her husband at home and decided that was what I would do. He stayed home 
with his family.
  We had home care and our 2 adult children have been very helpful and 
supportive. This is not for
everyone and you have to make up your own mind. I personally don't like nursing 
homes for various
reasons and could not have afforded it. There is a time when for many people a 
nursing home is an
understandable option and the only option, but don't let someone push you into 
it before you're ready
or if you don't want to do it. It is your decision and it can be made at any 
time.
  Note: Ethically, they are supposed to mention options like nursing homes, but 
are not supposed to
push hard for it. I should not have had to go through what I did about this. It 
went past ethical.
Marge Green
glenwyn@xxxxxxxxxxxx