Rita W....
The group home concept for single individuals having PD is something I've been
mulling over, rather than actually making plans for, Rita.
I started thinking about this when I was researching for an outside agency to
aid my mother who lives in a very fine senior's residence, that doesn't
provide onsite medical help (it's a "hotel," rather than a nursing home). Mom
suffers from dementia, having had several small strokes, and needs some
supervision and aid in some daily living and in getting to places
off-premises..
I hired "Seniors Outreach Services" (SOS) thru the Jewish Family Services to
do for my mother what I'm not able to do due to the distance between us.
SOS arranged for things such as a "pill delivery service" to drop by mom's
room every day with her daily meds, AND they WATCH HER TAKE THEM ('cause mom
wouldn't if she could get away with it!) <she's ALWAYS been that way about
taking meds!>.
Mom's SOS social worker also makes and accompanies mom to medical
appointments, and dental appointments. Plus she makes an on-site once-a-month
(or more, if desired or needed) visit to mom just to make sure mom's not in
need of something. This also provides a sense of continuity for mom... AND
the social worker (our dear Toby) ALWAYS calls me right after she sees or
talks to my mother and lays it right out for me, so I'm the one who makes the
decisions about mom's care. We're now discussing what happens as mom's
dementia progresses to the point where she'll need an assisted living
residence (oh woe!), and THAT'S a tough decision. Mom's social worker is
looking into that type of facility right now 'cause we see the need within the
year...
A service such as SOS *IS* very expensive, and my mother can afford it (tho
not easily). It's also not available in every location where the need is...
And dementia is NOT the same as PD...(tho I recognize a PD victim may also
have dementia)
Watching my mom as she ages and knowing my daughters lack of involvement with
my PD is what has caused me to see the prospect of a group home for the
single person having PD as being not only feasible, but NEEDED. It would
incorporate the same type of services my mom gets with SOS and the seniors
residence, if needed, yet have a more personal, home-like and FAMILY-like feel
to it (I hope!).
There's lots more to consider too... such as who's in charge of the PD-group
home residents finances AND money (presuming they're not able to handle it)
and other heavy subjects, such as a greatly deteriorating medical condition,
etc.
As I said, I'm in the MULLING stage right now, rather than the ACTION stage.
However, after my youngest daughter's May 25th wedding, I'm going to be
getting together with BOTH my daughters AND their respective spouse and
fiancée (whether they like it or not) and we ARE going to talk about
PARKINSON'S, the future, and their mother!!! I've already told them to plan
on this discussion...
Barb Mallut
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-----Original Message-----
From: Parkinson's Information Exchange On Behalf Of [log in to unmask]
Sent: Tuesday, May 06, 1997 3:49 AM
To: Multiple recipients of list PARKINSN
Subject: Group home PD
Beth and Barb
The group home concept for PD care is something that several of us keep
referring back to here in Nebraska. One does not have to be single to have
concerns about lack of interest in treatment/care. The problem seems to be a
bit more prevalent with female PWPs than with male PWPs who are married (and
my very sincere recognition of the support that Henry, Charlie, Bob and
other husbands on the listserv offer in the care and support of their
wives). Others of us do wonder where the support will come from when we are
no longer able to be in control of our days and searching for answers.
So Barb, as you develop you group home, please publish the guidelines along
the way so that we don't all have to reinvent the wheel in the progression of
this thing.
Rita
