At 10:41 am 25/03/97 -0500, [log in to unmask] wrote:
>I understand how others on the list do not appreciate this message or
>the one that prompted it, but I have read this list for four years and this
>is the first time anything useful has been said in regards to end stages
>of these diseases. Everyone else is too young or not this far
>progressed and they refuse for this subject context to get anywhere
>near 'THEIR LIST'. Well, we all have problems, we all have stages, and
>some of you may or may not get to these stages, but why is this list
>only for the fit patients, why isn't it for the ones who need the help most
>urgently? Why would anyone want to deny a dying person information
>as to the last stages of their disease, is it only so they can deny they
>may reach the same? Don't you all need to know this is possible and
>shouldn't you all have a living will stating your wishes? I can promise
>you that had Neida understood these back when she could talk or walk
>or write - she would have made her own wishes known in a living will,
>not only for herself - but also to prevent her children from having to
>agonize over them now.
Dear Louise,
I am in early stage Parkinson's, and though reading letters like
yours and Ray's are somewhat unsettling, I am sorry that you feel this kind
of information is not wanted on this list. No, end stage PD is not a pretty
story, but realistically, once diagnosed, it is an end we must all face,
like it or not. True, we younger ones, and early stage PWP want to be
optimistic and hope that a cure is just around the corner, and the knowledge
gleaned from others is most beneficial.
However, IMHO, this list should not, and is not just for the fit
patients, and it should be for anyone in any circumstance who needs help
urgently or not with a Parkinson's situation.
In 1977, my elderly Mother had a stroke, and my family was asked by
the attending physician in the Emergency Department, if we wanted a DNR
order written on her chart. Our decision was - yes, because we knew that's
what our Mother would have wanted.
In 1993, my husband and I went through a horrific weekend after
finding my older sister lying at the top of the stairs in her home, having
suffered a stroke and in a diabetic coma. After she was admitted to ICU, the
doctors put her on life support without asking me, even though it had been
made quite clear that there was little hope for recovery. Finally on the
Sunday afternoon I told the resident in ICU that this situation could not
continue. By that time, one of my brothers had arrived and he agreed. The
resident simply asked, "What would your sister want?" We said, "She would
want to be let go." These decisions are not easy, but as Ray said, "when you
get to the stage where you are asked to sign a DNR statement, to do so is
the more merciful act."
My heart goes out to everyone who must face this situation.
Judith
