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
- Re: [QUAD-L] Update Gale See Sylvia See
