Out comes a longtime lurker. I have a rambling, wrenching story about
Parkinson's and hallucinations. It does have a happy ending, though. I
hope it is of interest.
My father was diagnosed with Parkinson's 23 years ago. I became his
"careoverseer" this past year after being his caregiver for several
years since my mother passed away.
He progressively became too much work for me on a 24 hour basis. He
needed to get up 2-3 times a night with help. I got too tired. I had
my two young boys, a fulltime job and long commute downtown L.A. from
south Orange County. He moved to a Board and care facilty here in CA in
Nov '95. After three weeks the Board and Care director "demoted" him to
nursing home status because he rand his bell too often. He was moved
into their long term care facility located on the same grounds. This is
the beginning of the worst nightmare of my life, let alone HIS. At
that time he was taking 8 Sinemet (25/250) per day along with Artane,
diaphenhydramine (Benadryl) and parlodel.
His medications immediately were all confused. By law, patients can not
dispense their own medication in that type of facility. The staff was
not prompt, nor consistant with the timing of his meds. Within four
weeks he lost significant weight (22 pounds) and began to hallucinate.
The hallucinations were nightmarish, ugly and horrid.
I am convinced these hallucinations were tied to the timing of his
medications and possibly related especially to Artane. ( He also did
not eat much because 1. it was too difficult since he was mostly "off"
and 2. he was trying very hard to eat little protein so minimize the
competetion at the nuero receptor sites, and thus maximize his
functional abilities.) The also could have been aggravated by fear. My
dad had no control over his own well-being even to the point of
everyday bodily functions. This made him afraid.
I hastily looked for a another situation for him. I could not find
another place that would accept males. All the spots were full.
Meanwhile, my father became incontinent because of his rare "on" time.
His color was bad. He would burst into tears when I saw him. He was
frightened. I was too, as his health deteriorated rapidly and my early
hospital training made me aware that death would occur in a few months
if the situation did not change.
The happy ending begins when I found a long term care situation for my
Dad in AZ, thanks to a tip from a dear friend. ("It's too bad your Dad
can't be in a place like my old friend Clem....") A long shot, far
away, unknown and risky, but my Dad assessed the situation correctly
when I presented it. He said, "What's the alternative?"
My cousin and I virtually spirited my Dad out of this CA care center
the third week of Jan. 1996 and brought him by car to AZ. When I think
back, it is obvious he really needed medical transport. God was with
us, I know. He made it okay - only a couple scary moments and one stop
from the CHP because I was speeding - so afraid we'd run out of
Sinemet. The former place had discharged him on Thursday at 8pm with
only EIGHT Sinemet. (Oddly, he should have had about 50 in his
medication card). It was too late to get a refill, we had a long trip
ahead , and then loomed the weekend. Dad was taking extra pills because
he was so anxious, dripping sweat. Stress of the mildest form can send
my Dad into violent shaking. This truly was serious. His condition
was poor. We left for AZ at 4am Fri morning. At 7 we crossed the
state line and I called the nursing home expecting the day shift had
come on. In response to my questions, the RN my call was transferred
to said "Yes, his medications are prepared for him and he can have his
dose immediately upon arrival if he needs it. The staff doctor noticed
that meds may be short and ordered them yesterday." "Yes the meds came
in." "Yes, it is brand name Sinemet." "Yes, the doctor will be in
this afternoon and we've scheduled him to see your Dad today." What a
miracle!
In his new place, he gets his full daily allotment of meds in the
morning, then he is able to self- administer his meds throughout the
day. He has a great physician and neurologist who actually READS the
printouts from this newsgroup that I send to my Dad and that my Dad
brings him. (One of the probably many wonderful good things that
happen behind the scenes due to this great service that quiet lurkers
like me don't write about, though we should.)
Last month my Dad was "Senior of the Month" because of a song he wrote:
"A Desert Love Song From Arizona". He was featured on the local TV
network. He was Scrooge in the annual city Christmas parade a week ago
- and I saw him on a television newstape waving and shouting a happy
"Bah Humbug!" out to the spectators. He has NO hallucinations. No
perceived fleas are on his arms biting him. No foreigners are taking
over the institution with their militia and machine guns. No kids are
being forced to perform in lewd shows. No illegal immigrants are being
tortured in the basement. Tears are running down my face as I write
this.
What is the difference now? The timely meds, interaction, attention,
respect. Bottom line is: Hallucinations were controllable in his case
with proper coordination and dispensing of his medications, focus and
engagement of his mental energy and providing him with control over his
environment. I wish he could be on-line, because his narrative would
be much more concise. It's been a miracle. I am so grateful.
If you're asking ( as I would be) - where was I during those hellish
four weeks he was in the nursing home here in CA? In between trying to
resolve his situation, I was busy leading the team for obtaining an HMO
license for the company I worked for. I was hired for the task in
August. Our deadline was December 15. Needless to say, the task was
next to impossible. My boss, the CEO, was nervous because of promises
made to the Board. I pulled more all-nighters in December than I did
in all of my cramming college days 20 years ago. During that period,
we also contracted with the nursing home chain that included the
facility my father was in. Their credentials were great. The audits
of this specific nursing home were stellar. I realized that the
quality, "partner with the provider", "differentiate ourselves on
excellence" HMO I was working so hard to help make happen was another
hallucination.
Last June I quit my job - no, I quit my industry. I can no longer work
to support a system of health care delivery which I fundamentally do
not trust to provide quality in an environment in which the lack of
quality precipitates such tragic damage - such as I saw with my father.
Angry? Yes. Rage? A more accurate descriptive. And each night I say
prayers of thanks for those wonderful people in AZ who nurture and care
for my father. I drive there to see him once a month and each time he
is more the charming, self-centered, fussy dad I know and love.
Quality IS possible. (I know I digress. This post is about
hallucinations.)
But I have to say:
Thanks, Barbara, for your work maintaining the newsgroup. Thanks, John
S. Walker for your very excellent resources and reference guidance. So
many considerate, intelligent and good people contribute to this group,
that it's worth the amount of mail I get because of it. (DID I SAY
THAT?!!!) I even like some of the jokes.
By the way - here's my Dad's latest fave that he told me yesterday.
Two guys in Texas ran into each other after many years.
"Yeah, Wayne, I've done preetty well for myself over the years. Why,
I can get in my truck and drive all day in one direction and still
never get off my own land."
Wayne: I had a truck like that once myself, Pardner. But then I
traded it in for a better one.
Happy Holidays, Everyone!
(Sorry so long and rambling. I probably won't write again for another
two years.)
You wrote:
>
>Welcome Jackie.......You will find the list really useful, although my
>posting isn't the happiest. My father was diagnosed as having PD 3
years
>ago, and was prescribed Madopar. He developed behaviour problems and
was
>prescribed Haloperidol. His health deteriorated rapidly and he
appeared to
>lose the power of speech, after taking the drug, and died within 3
months.
>I protested to his Geriatrician that all my PD books said that
Haloperidol
>was listed as a drug not to be taken by PWP, but he still prescribed
it. I
>have spoken to several neuro's, all of whom were appalled that he was
on the
>drug. This is my PERSONAL experience of the drug and would never let
a
>relative of mine take it again. I have heard good reports of Clozaril,
but
>not had any experience.
>
>Best of luck, Emma
>
>
>>Hello,
>>
>>My mother has advanced PD and has been hallucinating for the past
year. This
>>was coupled with paranoia in some instances and she now takes Haldol
every
>>night to calm her and maintain an even disposition. She has a
prescription
>>for Clozaril that won't start until this week. The dr recommended
another
>>drug new to the market but her HMO wouldn't pay for it. Is anyone
familiar
>>with Clozaril and have they noticed an improvement?
>>
>>Also, my mother falls frequently and has had stitches in her head at
least
>>three times. She doesn't appear to want to help herself be healthy
by doing
>>exercises or having a healthy diet. Right now she is in a nursing
home
>>because of the paranoia and I am not too concerned with her diet
since it is
>>monitored. It seems though, that if she had her way, she would just
sit all
>>day doing nothing but sleeping and have people wait on her hand and
foot.
>> How can I motivate her to help herself? Is it common for PD victims
to
>>sleep so frequently? What about memory? We have had the same
conversation
>>at least 20 times about why she can't live alone in an apartment.
>>
>>I will appreciate any information on the above topics. I'm glad to
have
>>found the list, I just subscribed yesterday, but am looking forward
to
>>discussing these topics. Thanks :)
>>
>>Jackie ([log in to unmask])
>>
>>
>
