I hope I'm not intruding. Actually I am an Occupational Therapist (OT)
from Holland, but now live and work as a part-time teacher in Kochi
Japan. I subscribed to this group, on behalve of a 23 year old guy, who
I met in a hospital. He sustained a C2 spinal injury and of course is on
a ventilator. I already passed on some useful information to him and
hope it might contribute to him leaving hospital some day (he's already
3 years in hospital and his quality of life is seriously impaired by
it).
Anyway, this is my reaction to Chris Gawlak.
Although I do not have much experience in acute care settings I did work
with both vent. users (spinal injuries) and persons who had strokes. (In
Holland, England, Armenia and now Japan: my knowledge about American
health care is limited, nevertherless I think I have some reasonalbe
remarks to make).I'd like to pick up on some issues raised.
CGawlak(AT)aol.com wrote:
>
> Hi!
>
> 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.
>
> 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.
>
Unfortunately that doctor might not be the only one. Professionals might
judge your mothers situation, that is quality of life and the wish to
stay alive, as much worse than she herself and you do. This is supported
by a study (I think American) which showed that a group of high
quadraplegics, many of the vent users, led fullfilling lifes while the
professionals involved were of the opinion that "the lifes of people
with high lesion quadriplegia are so awful that no one would wish to
endure such suffering". It's sad that many of my colleagues think this
way, my experience tells me they are absolutely wrong. As do the many
email messages in this group.
> 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.
>
> 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?
>
About the bedsores: Is she on a special mattress? Or if they are really
massive she should be on a special bed, either a so-called sand-bed or
low-airloss bed (I might have mispelled and misnamed them, but
knowledgeble nurses and doctors will know what is available at your
area). It is important that your mother doesn't lie on it, that's why
they're called pressure sores. This means either turning regularly and
or using pillows to lift the pressure sore, and or using the beds I
mentioned. However, pressure sores can also be caused by shear-forces.
Notorious is sitting up in bed, without lifting the legs to work as a
counter weight (careful: if done properly it might cause to high
pressure on the buttocks). However, depending on the place bedsores do
not always prevent people from sitting up in a (wheel)chair. Bedsores
usually occur on the sacral bone (at the bottom end of the vertrebal
collumn) and it is perfectpy possible to make cushion with sparings in
them so she doesn't sit on the sore. The same goes for sores on
shoulders and heals. The sparings or holes shouldn't be too big though
as that might cause problems with other parts and the edges should be
rounded. Nurses, OT's and prob. PT's as well should know how to make
them or find instructions on it. Sitting might not be possible, but
should get serious consideration: it might do wonders to your mothers
mental status.
In the care of pressure sores it is also very important that your mother
eats well. Nutritious balanced food, high in vitamines and proteins. By
the way why isn't she eating? All the vent users I know eat normal food.
Another aspect, usually not addressed but I believe strongly in it is
mental status. A happy, active person is less likely to develop a
pressure sore!
A hospital bed is probably one of the most boring and depressing places
in the world. Surrounded by pople who do things TO you instead of WITH.
No wonder she becomes less responsive. (although that might also be a
result of her physical condition) What therapies does she receive:
OT for instance could advice on activities (self care, eating/drinking
etc., games, hobbies, things of interest) she could perform in bed,
alone or with others, advice on adaptations which might enable her to do
things.
As she is religious: how about visits from a chaplain, priest or
whatever person (as fits her religious believes). Try to think of
activities and subjects which would come naturally to her. (Habits and
automatic responses are less likely to be affected by strokes than
actions which require a conscious effort).
How about Speech Therapy: they can advice on communication aids
(although you seem to know quite a bit yourself) and train with it.
Next: you said you're not sure about your mothers congnitive
functioning. Has she never been assessed? That should certainly be done!
If persons suffered a stroke on the left side of the brain (right side
of the body paralyzed) their ability to communicate through use of words
(spoken and or written might be affected. (Is your mother paralyzed on
the right side? Or is she unable to speak because of the trach? if there
is no damage to the vocal cords that should be the case) If the
paralysis is on the other side (right side of the brain, left side of
the body) she might suffer from what is called unilateral neglect, which
basically means a reduced attention for everything on the left,
including body parts. Inthis case she might also have problems with
perceptioni.e. not recognizing what objects are for, or initiating
actions, i.e. using objects in the wrong way. There is a wide range of
problems which might be involved and usually an OT or
(neuro)psychologists (or speech therapists) will be able to do test with
her to find out if there are any problems in this area.
As for your other questions I leave them for vent users to answer, they
are probably the most knowledgeble people. However one more
consideration: I suspect your mother would be better of in a rehab
center as soon as her medical condition allows. In the rehab centers I
worked (in Holland and England) patients on vents, with pressure sores
and strokes and all the problems which come with it were commonplace,
albeit in small numbers. Usually the only criteria is that people
shouldn't be critically ill or suffer multi-system dysfunctions, but I
suspect your mother is reasonalby stable now. Infections are a frequent
complication for people with pressure sores (if she needs surgery: when
are they going to do it?) or who use catheters. All I know is that acute
settings usually have most if not all of the attention going to the
physical problems thus negelcting the need for stimulation and keeping
ones interests going.
It became quite a letter, I hope this is of any help. If you have any
questions, please feel free to contact me. Keep it up, I feel you are a
great support to your mother!
Peter Bontje
pbontje(AT)kagawa-net.or.jp