Greetings people with Parkinson's or who have family members with
Parkinson's! If I had found this network a few months ago, it may have
spared our family some pain, not to mention my father. He is an 80 year
old man who has slowly developed dementia over the last 9 years or so,
and Parkinson's about 5 years ago. Medication seemed to control his
tremors more or less in a satisfactory way until about six months ago.
As late as Christmas we still were able to walk him up and down steps,
into a car, and go over my sister's for the holiday meal. In January he
had started to develop difficulty in eating, and we have since learned
that this is the beginnings of a downward slope towards, ultimately,
death. What happens is that the Parkinson's stops the muscle that
constricts the air passage that goes to the lungs from working properly,
and swallowed food and liquids go into the lungs, causing pneumonia and
infections. After the first hospitalization, you are told to be very
careful as you feed him, to prevent the food from slipping into the
lungs. After the second hospitalization, you learn to mix all liquids
with this gel, so that he more or less must eat all his liquids. Each
time he gets pneuminia, however, his lungs are damaged some more. The
next time, a feeding tube is necessary in order to get nourishment, as
the muscle is too weakened to prevent much food or water from going into
the lungs. The family members must make this decision, as the person is
too mixed up himself to know what is going on. At the time, it seems
like such an obvious choice - live or die! Of course put in the tube,
it's a minor operation. It was perhaps at this time that we should have
been told of the long-term implications of tube feeding for people who
are demented. But maybe we would have made the same decision anyway.
Somebody mentioned the hospital bed in the living room and the spouse
sleeping on the couch next to it. Unless you're rich, this is probably a
common occurence. Finally, the breathing problems are so bad, in he goes
again. At this time you are asked to sign a DNR statement. What it means
is, don't use extraordinary means to try to resuscitate a person who is
not going to last much longer anyway, and you are only prolonging the
inevitable at great pain to the sick person. My mother insisted that the
hospital do everything possible, and so he was on a respirator for two
weeks, with a tube down his throat, other intravenous tubes going into
his arms to fight the infections in his lungs and blood, his arms tied
to the sides of the bed because, in his confused state, he pulls the
tubes out of his veins and throat. He looked utterly miserable. Would he
choose to end this misery? We don't know, he can no longer communicate
at all. After two weeks, they told us it was time to take him off the
respirator, and be prepared for the worst. Amazingly, it has been 8
days since he was taken off the respirator, and he still lives. He is
even off the oxygen mask, and has those little tubes that go into the
nose, so he is a little better, lung-wise. But the infections caused by
the lungs not working properly are not abating, and his existence right
now seems like nothing but misery. I am not trying to scare younger
people with Parkinson's, or older ones who have their faculties, or the
person's caring for elderly relatives who have both dementia and
Parkinson's. I don't even believe that if I read this before it happened
to my father, I would do any different, such as deny the tube feeding.
But I would advise anyone who is caring for someone that has both these
conditions, and you get to the stage where you are asked to sign a DNR
statement, to do so is the more merciful act.
Ray Sokolowski [log in to unmask]
