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Thank you for sharing.
Liz
----- Original Message -----
Sent: Wednesday, January 19, 2005 5:47
PM
Subject: Re: [QUAD-L] Update Gale
See
folks I just have to answer this posting. There is
so much fear in this email it is frightening. I didn't post my message to
scare the pants off everyone, I posted it let you know why Gale didn't
resubscribe after his surgery, like his posting said he would. Let me fill you
in on Gale's expectations and the results. There is so much truth in this
posting, that I have to respond.
1. We live in Alberta Canada, and are living with the hosiptal
situation in our area, not neccessarily true everywhere. Here the reason for
poor nursing care is a pat cutback problem answer. Gale had terrible pressure
sores on his butt, and they were complicated because after 22 years of being a
quad, this catheter continually bipassed, and we were constantly worried about
infecting his pressure sores. Also, after 22 years of having problem bowel
routines, his bowels had reached the point where we were unable to get him up
in the sling to lift him without his bowels moving. They had reached the point
where he was having to be cleaned sometimes more than 7 times a shift, which
was really wearing thin his quality of life and the patience of his
caregivers. This was also making it extremely difficult to keep his sores
clean. He researched the surgery for a claustomy (you spell it hee hee), and a
suprapubic cathether for 2 years before making the decision to have his
surgery. He consulted with four doctors before making his decision. When it
reached the point where it was impossible to lift him into his wheelchair any
more without his bowels giving way, he made the decision to try the surgery.
He was assured this would not only help with the sores it would improve his
quality of life many times over. He had spent the past 5 years 95% of the time
in bed, trying to get the sores healed, and now with the bowels and bladder
problems, his quality of life at the point where he was willing to take the
risk, knowing full well that the most dangerous place in the world for a quad
was the hospital. Quads are just too damn much work. He expected to be home in
3 to 4 days.
2. In
Alberta, on WCB (Workers Compensation Board), we fought and won the battle for
homecare caregivers, 24hours a day,, and for the past 18 years, have had
around the clock staff looking after him, paid by WCB. This enabled us to get
out of solitary confinement and actually have a great life together. However,
also their policy, until about 9 years ago, was that the minute he went into
hospital, the staff were layed off until such time as he got back home. In
that timeperiod he came down with the flue and a cold, and complications set
in his lungs. He had to go to the hospital, and within the first 1/2 hour of
his being there it was very obvious that they didn't have a clue how to look
after him. I watched for a half an hour, as we were getting him settled and
was fighting the nurses within the first 5 mins, and they didn't have a clue
that he was unable to ring a call bell, feed himself and they were tossing him
around the bed like he was a 15 year old hockey player. They were absolutley
at a loss as to helping him cough up the crap, so I asked the staff to stay
with him. Now, I am going to say, right, now that we had exceptional folks
working for us. Common folk off the street with no medical training, and all
had been trained by Gale and myself. Note: I was the furthest thing from a
nurse that you could get when he broke his neck. However, these caregivers,
went around the clock with him at the hospital, and he was transferred to the
Lethbridge hospital. This is a city hospital, so we expected much better care
than what he got in our small community. However, they didn't have a clue
either, so I keep the staff working, and they did, even though at that time,
they didn't even know if they would get paid for their time. They were driving
from Claresholm, to Lethbridge, and then working 12 hour shifts with no
breaks, mostly with him in a sitting position while they pushed the diaphram
for hours helping him cough. The hospital staff, stopped occasionally, at the
door to watch, but rarely offered to help. We nearly lost him that time, but
our caregivers pulled him through. When he got back home, I called his family
doctor to the house for a 2 hour doctor's appointment, where I outlined the
documented care he got from hospital staff. I asked him for a letter, for WCB
stating that if He didn't have HIS staff with him when he had to go to the
hospital, that he would die. OUR doctor had no problem at all writing that
letter, and our staff were paid for their time and expenses. That incident was
also a first, and it setup our situation for his last trip to the hospital.
This time there was no hassle at all about his taking his staff to look after
him, and WCB arranged motel rooms and meals for them, so this part of his
ordeal went very well.
3.
All arrangements for his surgery, hospital care (special bed and our staff),
ambulance delivery down and back, and the many tests before his surgery,
including his heart, because he had open heart surgery back in 1962 for a hole
larger than an egg in the bottom 2 chambers of his heart, were done, and he
had been given the all clear to go ahead with the surgery. The ambulance time
was verified 3 times, the equipment, bed and lifts, had been verified with the
hospital 3 times, and he anxiously awaited a new lease on
life.
4. Jan 4th arrived
and his caregiver that would be working the day shift and with him during his
surgery arrived at 4am to get him ready for the ambulance that was to arrive
at 5 am. 5 then 10 then 15 mins went by and no ambulance. We phoned and they
didn't know they were supposed to take him. The arrangements were made but not
put in the computer for the driver. They rushed here and by 5:30 he was on his
way, now pretty apprehensive as things were not going as planned, and they
rushed to Lethbridge through the thick fog and icy roads. When they arrived,
the staff at the hospital were pretty ticked off getting him ready for
surgery, because they didn't know he was a quad, imagine that. They finally
got him ready and into surgery. He had both the clastomy and catheter surgery
at the same time and in that order. He sailed through the first surgery just
fine, and the second surgery, that was supposed to be a stab wound incision,
turned out to be a 9 inch full incision clamped shut, and his stay in the
hospital was no longer in the 3 or 4 day range. Also during the second
surgery, to date, we are not sure what went wrong, but his heart acted up. We
think he may have gone into severe disreflexia, and may have damaged his
heart, but have not recieved medical records yet to know for sure. Whatever,
his heart acted up, and from there is was all downhill. When he was ready to
come out of the recovery room, there was no room ready for him, when the got
the room, the bed he needed wasn't there and not going to be. By then, my son
and I were also down there, as I had to wait for my son to drive me. Also by
now I am getting into the fight mode we expected. I raised cain about the bed,
and said I would go home and get his. We had to get him into a pressure relief
bed because of his sores. They were once again tossing him around the bed, and
I had to get really tough. I had informed them, he was there for 3 days
surgery, not 3 months with broken bones. We have a friend, who has had his
neck rebroken twice, his arm, and wrist, from rough handling while in the
hospital.They put him on double the blood thinners, that they thought he was
on at home. We are not sure where that one came from, because he wasn't on any
blood thinners at home. They put him into disreflexia twice, filling the
bladder trying to get the superpubic catheter to work, and finally believed
him. I don't think they even knew what it was let alone that it was happening.
It was at that point, when our staff, who were instructed, to care for him,
but not interfere with the hospital care, lost it and broke the rules. They
got right ticked, and started to fight for him anyway. Once again, they were
doing all the work, and were not even given relief for a 15 min break. They
were tired, anxious, in shock at his care and the mistakes made every damn day
so too hell with the rules.
5. After 7 days of this, and still neither the catheter or
claustomy were working yet, they took him for ultrasound, xrays and blood
tests. After that, the heart specialist raised particular hell with the
doctors, and nursing staff, and praised Gale and his staff for the work that
they were doing, and for their knowledge of his care and needs. At least they
had some satisfaction with that morning. She informed Gale that he had a new
hole in his heart, they were unable to give him medications, such as morphine
or sedatives or his heart would go, and that he had to make some decisions
about his life by morning. After this the shifts changed, and the afternoon
shift arrived, and he sang ditties, which changed to songs and hymns with her
until midnight. They prayed and he got himself right with his God. The
midnight shift arrived and helped him battle the reality of his situation, and
by morning he was right with it and ready and waiting for Jean who worked the
dayshift. At this point he made the decision, not to rush his family down to
Lethbridge, and he used Jean as he made his final preparations. I believe that
he paid his staff the highest of compliments and he entrusted them with his
final hours. I also believe that after caring for him through open heart
surgery, and the past 22 years, he decided, that his family didn't have to sit
with him and watch him leave. It was the last thing that he could do for
us.
I am
posting this rundown, because YES in some areas, and ours in one of those, the
hospital is the most dangerous place for a quadraplegic. YES Quads are really
just a pain in the butt to hospital staff who haven't a clue how to care for
them. HOWEVER!!!! we can't live our lives in constant fear either. We have to
take the chance sometimes, BUT for gosh sakes, know the circumstances you are
in, prepare, even if you have to be the one breaking new ground in your area,
and go for the very best quality of life that you can get. In our area, Gale
was the first in the province to fight WCB to get 24 hour homecare with
staff, not sent in from places like Weecare or homecare businesses. Now all
the quads in the province on WCB, have caregivers, no longer family, working
their buns off dog tired, and unable to give the same care. He was also the
first to fight WCB for a wheelchair accessible van, and now all the quads in
the province were provided with one.
Not everyone in this list will have WCB
to fight for your needs, but wherever you are, there is a government to be
fought. They only get away with it when we buckle and say, what can I do. Well
you can holler, and if you don't learn anything else from Gale, remember, No
doesn't mean NO. It means YES, but now you have to fight for
it.
Because, Gale hung in
there with his fight for staff, our children have been free to grow up and
live their own lives. He has only been in the hospital 3 times in 22 years,
because he got much better care than I was able to give him doing it 24 hours
a day. AND LISTEN TO THIS, having 24 hour day with staff who are getting paid,
15 bucks an hour compared to the 1.45 an hour that I was getting doing the
same thing by myself with no breaks, SAVED WCB thousands and thousand and
thousands of dollars. Because Gale was the only quad in the province on WCB
who was not spending half of his time in a hospital at OVER 2000 dollars a
DAY. After 7 years of staff, they compared the expenses of Gale with staff to
those at home with family trying to do it for next to nothing and they made a
special trip to our home to THANK us for hanging in there, as it had saved
them unbelieveable money in care.
22 years ago, we were just quads,
scattered and unorganized. One would get this, and another that. Well not so
today. You have the means to communicate with each other, sharing each others
battles. Each battle won, can be used by someone else. It always sets
precident.
Gale did not
live his life in fear. On the contrary, he lived it with hope, and took on
each battle. You have to learn to find those rare folks called consultants,
who can see past the dollar sign, to the equipment that you need to make your
life liveable. It is not easy, and you will not win them all, but if each one
wins only one battle, that helps a fellow quad, together, you can win this,
and I am sure the day, for many of you, is not too far off, where research
will get you up and on your feet again. As for his surgery, and what may have
happened in the catheter surgery, we don't know. Able folks run the same risks
as quads. The difference here is the care after surgery. Make arrangements not
to be alone. It doesn't matter if the hospital like it or not.
Here is a copy of the
verse Gale loved and we have put it on his memorial or funeral
cards.
The Train Of Life...........
Some folks ride the train of life Looking out the rear,
Watching
miles of life roll by, And marking every year.
They sit in sad
remembrance, Of wasted days gone by,
And curse their life for what it was,
And hang their head and cry.
But I don't concern myself with that, I took
a different vent,
I look forward to what life holds, And not what has been
spent.
So strap me to the engine, As securely as I can be,
I want to
be out in the front, To see what I can see.
I want to feel the winds of
change, Blowing in my face,
I want to see what life unfolds, As I move
from place to place.
I want to see what's coming up, Not looking at the
past,
Life's too short for yesterdays, It moves along too fast.
So if
the ride gets bumpy, While you are looking back,
Go up front, and you may
find, Your life has jumped the track.
It's all right to remember, That's
part of history,
But up front's where it's happening, There's so much
mystery.
The enjoyment of living, Is not where we have been,
It's
looking ever forward, To another year and ten.
It's searching all the
byways, Never should you refrain,
For if you want to live your life,
YOU'VE gotta drive the train!
God Bless You
All. Take care if you have to go to the hospital, and prepare for someone to
fight for you, but don't waste your life with fear of what might be. Life is
Risky and tougher for some than others. Fight for what you need to make your
life functional. Remember, No doesn't neccessarily mean no. No means, ok, I
have to fight for this one.
Gale knew that either way, he was going to be better than he was. He
took the risk. Sometimes, however, shit happens, even with help and care.
However, I know he is better today. When our staff were sobbing in the
hospital waiting for us to arrive after his passing, I thought for sure I
wasn't going to be to handle it all. As I rounded the corner on the 4th floor
of the hospital, to go to his section, I was feeling faint, but he fell instep
beside me, and took my arm, and together we dealt with our staff. My stride
changed and I have been at peace since. He is just fine and he is certainly
walking. I could almost see that right foot of his that stuck out to the side
with his normal walk.
This is heavy stuff, but so was the original email.
If you chose to
have surgery, be sure that it is to improve your quality of life. Do not go
alone. And you do have a right to speak up, and demand quality care, even if
you have to get a lawyer to get it for you.
Sylvia See
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