Re: The Nursing Home experience

[Nancy D Mullen <ds401@xxxxxxxxxxxxxxxxxxxxx>]

Reply to message from Barb_MSN@xxxxxxx of Sat, 29 Mar
>
>Dear List Friends....
>
>I've been following this thread and thinking about it since it began, tho have
>made no comments on it till now.  My response is to the LIST, rather than to
>any one individual, and if anyone is inadvertently hurt by the response,
>please accept my apologies now, as that isn't my intention.
>
>I've had PD for 21 years, have had a unilateral pallidotomy 2 1/2 years ago,
>and take a modest amount of Sinemet 25/250, plus a CR 50/200 "chaser" daily.
>I'm 54 years old... (establishing credentials to let ya know where I'm coming
>from)
>
>I'm not afraid to hear about or discuss death or dying because that's a
>natural part of living and ultimately will effect us all no matter how we may
>resent it and kick and scream about it on the way out.
>
>I've made myself aware of every nuance of this disease that I could over the
>years, no matter how painfully some of the information effected me emotionally
>as I found it out.   And believe me, it IS painful... 'case there's eventually
>only so long one can deny what may happen in the future 'cause that future has
>a way of becoming "now."
>
>I read with compassion and also understanding each List message that comes my
>way, yet have found myself loath to do so with this current thread.  This is
>*NOT* because I don't believe this forum is the proper place for a caregiver
>of family member or even a friend of a person with Parkinson's shouldn't or
>can't speak out here - they certainly can, as I see them as much in this venue
>as I see others like myself.
>
>HOWEVER... I find it impossible at this point to separate my HUMAN feelings
>from my  feelings as a person with PD when reading the posts in this thread,
>and the individual with Parkinson's just HATES to read these posts from
>caregivers/family members of a Parkie suffering severe dementia,
>hallucinations, loss of nearly everything we all need to function as human
>beings in a not-particularly sympathetic or understanding society, and just
>plain loss of SELF.
>And I didn't even mention the stories from those who have felt it necessary to
>place a loved one with PD in a hospital for whatever the reason or a nursing
>home or other such care facility.   IF any of us on the List was at THAT
>point, we wouldn't be capable of posting here or reading these messages.  A
>scary future possibility for all, I'd think..
>
>And of course there's that "end-stage Parkinson's," which is usually rarely
>mentioned  by the general Parkie community here on the List (but apparently is
>subliminally on the minds of many of us). It's rarely mentioned here because
>the fear of even THINKING about that, much less reading of it week after week
>as viewed by various caregivers/family members who have posted their
>experiences in their capacity as caregiver is EXTREMELY FRIGHTENING to many of
>us, if not ALL of us.
>
>If a person with PD is at that stage of the disease, they're not capable of
>posting HERE.... so we're not exposed to them directly to get input.  Instead,
>we see their personal agony thru the eyes of someone else who is also going
>thru a personal agony due to PD, tho a different kind than the Parkinson's
>patients themselves.
>
>I'm afraid I cannot read this thread and nor do I find it possible to hit the
>delete key as I do with the few other topics I'm not interested in.  I cannot
>express the suffering I go thru in reading these pain-riddled messages
>either... as I ache for us all as well as myself.
>
>This is not an attempt to censor anyone or to stop cold the thread in
>question, however, please keep in mind that there IS a caregivers sublist
>adjacent to THIS List JUST for the kind of discussion which has been carried
>here on the PD List-proper out by the assorted caregivers/family members in
>this thread (CAMILLA FLINTERMAN, WHERE AAAAAAAAAAARE YOU?!) <smile>
>
>I strongly urge you to consider moving this conversation to that sublist,
>because speaking for myself only, this pain I get when reading this thread is
>almost overwhelming at times and even if I don't actually read a new post in
>the thread, that "subject" line is enough to remind me about the topic.  I
>can't believe I'm the only PWP who feels this way, either.
>
>Again, this is my opinion and feelings only which I'm sharing and no pain was
>intentionally meant to be inflicted.
>
>Barb Mallut
>barb_msn@xxxxxxx
>
Dear Barb,

I too feel the same way. Thank you for writing this letter. I have MSA and
>38 yrs. old.  I understand the pli8ght of caring for a loved one who is
seriously ill and then dying, and I try to understand that the caregivers
have a need to address their fears and concerns.  I don't understand why
SOMETIMES the ill person can't have a home health aide.  However, that is just
my own thought.  Anyway ......Again thank you for writing this letter. I
appreciate it.  I too hope this added support for Barb's letter is not
taken offensively.

Sincerely,

Nancy M.
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>----------
>From:   Parkinson's Information Exchange on behalf of Naomi Meyer
>Sent:   Saturday, March 29, 1997 5:14 AM
>To:     Multiple recipients of list PARKINSN
>Subject:        The Nursing Home experience
>
>Hello, all.  I've been reading all the communications on the list, but I
>haven't written anything for a long time because I've been trying to deal
>with the Nursing Home admission of my husband, Dave, since January.   After
>he was hospitalized for 2 weeks from a psychotic reaction to zyprexa,  I came
>to the conclusion that I could no longer manage at home without help around
>the clock.  If he fell, I was unable to pick him up by myself.  I could not
>leave him alone at all.  Since I have a job and for various other reasons, my
>only solution was the nursing home.  We had more or less expected this --
>Dave has had Parkinsons since 1972 -- and knew this might ultimately be where
>he would find himself.
>
>I can only tell you it is one of the most painful decisions I have ever made.
> (As Bob Howard will attest).  I had the complete support of my 3 children
>and their spouses -- in fact of all my friends and acquaintances,  also --
>all of whom told me they don't know how I managed with him as long as I did.
> But as all of YOU know, you just DO!
>
>It's been very painful for both of us; we're BOTH lonely and sad.  But Dave
>has improved.  His mobility is better, the hallucinations are benign, his
>paranoia is lessened and there is someone around to meet his needs.  I can't
>say he's happy, but I feel he is getting good care.  My children and friends
>visit him whenever they can and we try to take him out for rides and to
>restaurants on occasion.  I know that it was time.
>
>I, too, was confused by someone who referred to "the final stages" of
>Parkinsons.  I would like to know what they are.  Since this is a "designer"
>disease, as someone said, each patient seems to have different symptoms and
>reactions to the medications and deteriorates at a different rate.   Dave
>really only began to get worse about five years ago -- after 20 years.
>
>Naomi Meyer, CG Dave 69 /25
>
>

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