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Perhaps  words
and how we use them
to describe 'cause of  death'
for someone suffering the end stages
of parkinson's disease
are important.

It seems to me that we need more discussions
that bring to everyone's attention
what the end stages of pd are like
so that we can create
a greater awareness
of pwps' special needs
for the medical professionals
who treat pwps
in the end stages of the disease.

When my mother died
on Oct 12, 2001
a few short months ago
she  suffered a system failure,
first becoming dehydrated and malnutritioned
from an inability to swallow,
then contracting a bladder infection
while in a nursing home.
My concern was
and still is
the lack of awareness
about parkinson's disease
that many health care professionals experience
even though they care for
aging populations with pd.
Those responsible for my mother's care
in a nursing home
couldn't even get sinemet to her on time
(often giving it to her 2 hours later than prescribed).
Her body grew too weak
to fight the infection in her dehydrated state
and the nursing home would not hydrate her intravenously.
Ultimately, the coroner listed her cause of death
as 'sepsis'.
Without pd,
she would not have gone into a nursing home
and perhaps would not have received a bladder infection
from improper toileting.

The health care professionals in her nursing home
left her in a wheel chair all day long
and dressed her in diapers
because they were too busy and understaffed
to help her reach the toilet
when she needed assistance
throughout the day.
In fact,
she often couldn't even reach the call button or trigger it
when she needed to call for help.
Six weeks before entering a nursing home
she was living independantly
and walking with the aid of a walker.

As difficult as it is,
we need discussions like this
to create an awareness
of what happens to the body
when  parkinson's advances
for health care professionals
who are not yet trained
to meet the special health care needs of pwps.

The words we use
define our lived experience with this disease
and if we maintain a dialogue about it
which includes listing it
on a death certificate
it sends another signal to the health care professions
about its end stages
and the special needs of  *living*  pwps.

I loved my mother with all my heart
and will always miss her profoundly.
When I talk about her last days
I  use the word 'pass'
to describe her dying process
because I beleive that the act of dying
is a passage or transition
(which is not a religious conviction
but a philosophical perspective).
In the end,
my lived experience as her caregiver
remains with me
as a valuable lesson
and a teaching tool
for life.

Joan
in loving memory of Helen 80
diagnosed in 91
she proceeded through her last years
with parkinson's
but more importantly
with grace and dignity
and amazing generosity.


-----Original Message-----
From: Don Adams <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Saturday, March 02, 2002 10:45 PM
Subject: On Life, Death, etc


>Dear PWP:
>
>        I regret that I am motivated to interject my thoughts into this
issue....
>and not to mince words, my wife died from cancer not respiratory failure.
>        In 1971 the 36 year old love of my life, high school sweetheart,
and the
>mother of three of my children died in hospital. The cause of death as
>entered on her death certificate was noted as respiratory failure. In March
>of 1968 she was diagnosed with breast cancer, underwent radical breast
>surgery, and endured the severe radiation treatments of that period in
>time. In the Spring of 1970 her cancer had recurred, or had metastasized
>throughout her body, with particularly virulent effect on her lungs.  In my
>opinion it is no more incorrect to write or say that a person has died from
>Parkinson's disease than it is to say they died from cancer. Any argument
>to the contrary is hair-splitting and redundant.
>        I wholeheartedly agree with Mr McCreary regarding this useless and
trivial
>topic.
>
>                                        Don A
>
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