I hope it's ok that I subscribed even though I'm not on a vent. It seems to
me that in this day of the Living Will not many people end up in my mother's
condition and I've so far been unable to find anyone with a similar
experience.
Background: In Dec. my mother (age 64) suffered a stroke, cardiac arrest, and
massive internal bleeding (side effect of 'blood thinners') and has been
unable to be weaned off of the vent. I believe it's because her many medical
problems (including a gigantic 'bedsore' that will not heal without
reconstructive surgery) have left her in such a weakened state. If it's not
a fever from an infection somewhere (recently she had a seizure due to the
fever) it's rectal bleeding which sends her hemoglobin tumbling.
She is conscious but not very responsive. The last couple months we've seen
a decrease in her responsiveness. She suffered from depression before this
illness and was on medication, but medication she received for a while during
this illness seemed to have no effect so she was taken off of it. She used
to nod or shake her head 'yes' or 'no' but now rarely even does that. We
communicate with her by asking her to stick out her tongue for 'yes'.
In spite of this catastrophic situation, I ask her periodically if she still
wants the vent on and if she still wants to have her heart re-started if it
stops again, and she indicates 'yes'. She is an extremely religious woman
who was always against "pulling the plug", with a strong belief that turning
off life support was interfering with God's plan. My family is supportive of
my mother's wishes on this matter.
During stable periods, the hospital pushes to transfer my mother to a
sub-acute rehab facility, even though her insurance is good. We are being
very careful about selecting a new facility, because we had a very bad
experience. The first hospital she was in (where the doctor's said she would
never emerge from the coma; it took a month, but she did) transferred her
from ICU to a vent facility that could not handle her medical problems just
because they wanted to get rid of her (I believe) and it was disastrous
(sp.?).
The situation is furthur complicated by the fact that my parents are in NJ,
I'm in Fla., and my brother is in Massachusetts. I visited VenCor in
Philadelphia but didn't like it. I found a facility in NJ that is good but
there is a waiting list (last female bed was available 6 months ago). The
closest vent facility to me in Fla. is 120 miles away. I don't see how we
could care for her at one of our homes due to the high level of medical care
that she requires.
About 3 months into this crisis, we did transfer my mother to a hospital that
respects my mother's desire to continue living in this condition, and she is
receiving good care now. However, physicians at the first 2 hospitals
appeared to make judgements about her 'quality of life' and felt (I believe)
that she was not worth saving. One doctor even spent 30 minutes with her
trying to get my mother to say that she wanted to die, after we had clearly
told them she did not. We had to fight with them to get them to clean her
bedsores and drain the fluid from her lungs.
Since she can't speak, we are uncertain about her level of cognitive
functioning, although by her "yes" responses it seems there is quite a bit
there. We can tell by the expression on her face that she still prays often.
We are willing to purchase VisionKey which will allow her to type letters
with eye movements but she has not been responsive enough for us to train her
on it (although she did tell me she wanted it). I think part of me is afraid
that if she can't use it I'll know that she is not really 'there'
cognitively.
My mother was always a great talker -- I could put the phone down and go to
the bathroom and she wouldn't know I had left.
I know this is terribly long but I'm desperate to be in touch with someone
who can help, and I guess I'm trying to include anything that might strike a
chord with someone.
Some things that I'd like to know that come to mind now are:
What does the vent feel like?
What is involved to set up a unit at a home? To maintain the unit?
My mother CAN swallow (we feed her water ice, jello) but is on a feeding
tube. How do you eat with the trache?
Are there any comprehensive listings of vent facilities?
Has anyone had any bad bedsores that have healed?
Are there any special needs of vent patients that may not be being met by her
current care, keeping her weak?
Has anyone used VisionKey (made in Canada)?
Does anyone have any stories of people catastrophically ill like my mother,
who survived or did not, and things they learned from it?
Did anyone have any experiences with the medical community where they wanted
to "pull the plug" on you?
I'm looking forward to any responses.....
Chris Gawlak
cgawlak(AT)aol.com