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to all:
i spent from 2/4 - 3/6 with my mom and dad in tyler, texas after receiving a
"distress signal" from my dad's (PWP) visiting nurse - she was concerned when
my mother (CGiver) called her into her bedroom (which is where she spends 80%
of the day - as well as night - behind closed doors) and cried and told her
she just "didn't care" anymore and couldn't "do it" anymore, etc.  She was
referring to HER life as well as taking care of Daddy and her own 95 yr old
mother (living in the attached apartment - converted garage) -

i know from speaking with other "children of parkinsonians" that ALL
relationships change when a family member is diagnosed with the illness - i
just never knew how much it could change between those without the disease. .
.

in any case, mom has become increasingly depressed and for the past month, we
went to all of her doctors, as well as seeking the help of a psychiatrist who
switched her 150mg of Zoloft/daily to another medication called Calexsene
20mg - msp?)  I stayed another two weeks for her follow up visit to see how
she thought the meds worked, as well as to see if there were any outward
changes - none at the time i left and none that she could tell -

additionally, her overall health had deteriorated - her glaucoma isn't bad
enough to require surgery, but does affect her ability to see (I couldn't
understand why SHE wouldn't tell Daddy he had food all over his chin during
meals - now I realize she apparently can't "see" it)

Her diabetes had worsened to the point of requiring additional oral
medication and, after I returned home, she called me with the news that the
Dr. was not pleased with the readings and she has started daily injections of
insulin -

Her hands tremble almost constantly and additionally she has been falling
frequently - four (4) times while i was there - once cutting her brow bone,
once skinning her ankle and leg -
but never "seeming" to take it seriously -  Every time she would come home,
the family would gather at her bedside to listen to "how it happened" trying
desperately through Qs, to find out the reasons - balance?  vision?
dizziness?  The fourth time it happened I got so angry with her - didn't she
understand that although we ALL had compassion for HER and were genuinely
concerned for HER, if she didn't seek help about it (she hadn't mentioned it
to any of her doctors previously) - it was almost as though she were crying
"wolf" or merely seeking attention of her own (which of course everyone,
especially CGivers, need daily.  Of course no one hurts themselves on purpose
- unless they need help - but we're already addressing that. . .  Since I
came home, Mom has an appointment with Daddy's neurologist 3/31 - and I know
she is terrified - what if she, too, has Parkinson's?

Now, the good news is that while I was there, I was able to "fine tune"
Daddy's med schedule some to keep his on time more consistent without
dyskensia - he's doing great -

I understand from others that my mother's situation is certainly not unique -
CGiver's often neglect themselves, find comfort in unhealthy ways (food,
drugs, liquor, isolation, etc.) and my mother chose food and isolation -
unfortunately, it affects my father's quality of life and that's where i've
felt resentment - SHE has a choice - HE doesn't -

I won't apologize for the length of this - I needed to see my thoughts in
print, as well as update you all -  Remember, too, that my parents are the
people out there that, although intelligent and "with-it", have narrowed
their world (by choice?  by accident?) and don't have YOUR support and YOUR
knowledge -  it is people like my parents that I am concerned about - those
who DO NOT access all that is there for them - information, support, hugs,
etc.  And for most of them (including my parents) it is all at their
fingertips - but the "will" is not. . .

that's a niche that MUST be closed -

Cari
  daughter of Dempsey-PWP (71/16+)
  & Jo Ann-CGiver