Hi everyone. You've not heard of me before, but I've
been reading the list for about 1 month now. I was hoping that someone
would write about PD & Dementia, but I haven't seen anything yet. Now
things force me to write to the list, not just read it!
Five years ago, my parents retired from Canada to Costa Rica
to their "dream house" in the country. About 1 year ago, my father was
diagnosed with PD, although in retrospect he must have had it for quite a long
time, only we never picked up on it. Why? He had a terrible accident
back in the 60's which, amongst other things, left his right hip joint fused
with the leg bone -- so it was difficult to gauge if his rigidity or shuffle
walk wasn't in fact just the difficulty in moving his hip (one leg is 2 cm
shorter than the other). As for the bad change in his demeanor ... well he
was always difficult and not very sociable and his hip always caused pain, so
who knew?
Now all his symptoms are quite pronounced and very obvious:
shuffling gate, slurred speech. Dizziness and imbalance. Some tremor
in the right arm. He has also been diagnosed with PD dementia. This
is the part that has caused us as a family much grief. We almost feel that
if it had just been PD only -- then we could have coped. In the past year,
it has steadily worsened, and now we see the dementia as part of the many
unsociable aspects he displayed earlier when we thought he was OK. So
maybe he has had the dementia aspect also a long time -- hard to
say.
Even though he understands he has PD, he does absolutely
nothing to help himself -- he distrusts physicians, refuses physical therapy and
even gives a hard time in taking medication. This has always been in his
nature. However, in the past 3 months, it has become worse. He has
urinary incontinence, an obsession with bowel movements (which are not pretty),
outright hallucinations, violence and a complete "slowing down" of
movement. He can no longer get up on his own when he falls (and he falls
quite often and hard) and relies on my 100 lb mother to get him up!
The Sinemet CR and Jumexal he is taking somewhat alleviate the
rigidity, but the dementia seems almost worse, and the neurologist says they
have tried every combination of drug "but they all seem to make him psychotic"
(to quote his words). We even tried no Sinemet CR thinking it would be
better to be slow & rigid than psychotic -- but that was the worst of
all.
My mother is the primary caregiver, from
cooking to dressing to some bathing/toiletting to lifting up to
medicating. She is at her wit's end. He has made my mother's life
intolerable. I only hear of these things second hand from the telephone (I
live in Vancouver, almost 7000 km away), but I understand that it has reached
crisis levels because now he has also added violence to the whole mix -- he
threatens my mother constantly (grabs her arms and tries to break her fingers,
chokes her, takes large knives and threatens her etc.)
I know this may sound horrible to you, but I am trying to deal
with something that is so far away, from which I have little control.
Logically, I conclude that he should be interned at this point, or at least
heavily sedated. My mother disagrees 100% and will not allow it. If
they were in Canada, I feel he would be under better treatment, and there is a
lot more support for my mother (such as home workers) -- not to mention the
costs (free versus pay for everything). They are not wealthy
people.
I have found only scant references to PD and dementia, but
nothing at all regarding progression, treatments, proper responses, methods of
assessment. It seems that no one really knows too much about this, or what
to do about it. Or how to do it.
I am preparing to go down to Costa Rica within the next 2
days, and I will read any of your postings if you have any comments on the
above. All is appreciated.
Regards,
Robert McKone