>Date: Sun, 19 May 1996 13:50:53
>To: Parkinsn - mail to list
>From: jacklyn <[log in to unmask]>
>Subject: need info
>
>Hello all. I have been "lurking" for some months now. I have learned a lot
from the correspondence exchange and now could use a little help from some
of you in Ontario or New Brunswick.
>
>My father has PD. He was diagnosed around 5 years ago - he is 72 years of
age. He appears to be deteriorating very quickly (??) from no symptoms 5
years ago, to now where he is almost totally immobile. He has developed a
very consistent "mask", and is developing bowel control problems. His speech
is almost unrecognizable now however my mother appears to be able to
understand him (with difficulty). No one else can easily understand. My
parents live together at home with my mother being the prime (almost only)
caregiver. My mother spends almost all her time caring for him, from getting
him up/shaved/showered/dressed/moved to the tv room, feeding him, back to
bed ...... =20
>
>Here is our real problem! My mother (caregiver) refuses any help
whatsoever!!  They are financially secure and could well afford part time
nursing  help (someone come in to help in the morning routines, again at
night) - this would take much of the "burden" off my mother! My mother is
somewhat frail and I cannot understand how she copes!! My father is not a
light person (est. 170-180 lbs) and as you all probably know, is a
"deadweight"!  Along with my 4 brothers and sisters throughout Canada & the
U.S.A, none of us want my Father to be placed in a "home" as we all feel
that home & proper care is far prefereble!  My mother appears to be in
perpetual "denial" - constantly hoping/expecting him to "improve"! I think
we know better - apart from miracles - but cannot persuade Mother otherwise!
>
>We lived in the Toronto area but uprooted to the Maritimes to live close to
my parents - to be there & to help! Unfortunately, after the move &
relocation, we found out that our "help" or "assistance" was not wanted! I
keep asking my Mother if I can help or If she would consider getting nursing
or other help - the answer is always the same, namely that "things are O.K.
& she is "coping".  We all know better.!
>
>My Father was a senior  officer in the Canadian Air Force,  having
flown/served in WW2 and being affiliated with the service until he retired 7
years ago! I am sure there is some assistance available through the Vets -
either with monetary assistance or care facilities - but my mother will not
consider asking!  She "does not want" anyone coming into her home to help!
She is afraid that they may criticize her for "the mess"??? We have no idea
how her mind works at this time!
>
>My personal opinion on "Care Facilities" whether hospital or Veteran
facilities - is somewhat negative. Knowing my Father's personality, I (we)
feel this would be a bad idea as he may not do too well in such an
environment! On the other hand, the way things are going now, we may shortly
be faced with the demise of both of them - my Mother driving herself to
physical and mental exhaustion (she also has a heart problem too) and my
Father reacting to the possibility of something happening to my Mother! We
feel so helpless and cannot get my Mother to listen to any reason=
 whatsoever!
>
>My mother is starting to talk about some facility in Ottawa - possibly a
special Parkinsons "floor" in an Ottawa hospital? Has anyone heard of such a
facility? Why she has picked on Ottawa I do not know - possibly something
she has heard or some reference she has learned through Air Force journals
etc..=20
>
>Ottawa seems quite remote from our eastern N.B. location (Chatham) and if
she was to consider some "home" care facility, closer would be better of
course! Does anyone know of Maritime facilities that are "good"? We have a
local hospital that has care facilities (Mount St Joseph) but I am not sure
what the care level is. I would like to know from first-hand experience
rather than talking to the staff! Credibility, I guess!
>
>We have to do something soon - I suspect we are "running out of time".=20
>
>Any ideas or pointers??  Have any of you had a similar experience with a
caregiver who "wants-to-do-it-all" regardless of the possible consequence to
herself or the PD person??
>I would really appreciate your help on this! I will reply to all contacts.
>Barbara, possibly you, especially, can help on this one, with regard to the
unknown Ottawa facility.
>Thank - Jacklyn.
>
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        "Tomorrow is the Future,
                     Yesterday is the Past, =20
                               Today is a Gift
      - That's why we call it the "Present"!
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            -Jacklyn - N.B. - Canada-=20
   =20