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[Remembering LiveAndLetLive]
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Rob Derksema
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Feb 14, 2004 18:55 PST
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Live & Let Live!
Disabled? Not? Difference?
This support news was/is for disabled people from every age & every kind
of disability. I am not certain I can carry on Rob's news, but, I wanted
to send you a little message as promised from time to time. Rob's is
terribly missed & I know you miss him too. He loved all of you guys. I
am still working on memory pages & most of your notes should be seen on
them now, but, still 600+ emails to go. There's pictures & a note on
each page. Love to you, Patsy
Remembering Rob
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I left Rob's last memory story here. I do know some of this story & may
try to finish some of it for you when I am up to it. Of course it will
not have all the detail & expertise that Rob had put there himself. It
may be very short versions, of the things I remember. Patsy
My own story 61
Last week I told you that Bett landed on her bed, and why. In the first
place because she couldn't live a normal life, too dull for her, she had
always to seek for adventure, and when she found adventure she didn't
know how to handle it. Of course the death of Opa came not as a
surprise. Anybody in the family knew that his death was evidently
coming, but Bett was too distracted because of what happened in our life
to see it. Sometimes when we came home from visiting Oma and Opa we
talked about it, but that didn't seem to be enough to really enter her
mind. So when Opa finally died she was unprepared. Add the way her
family treated her, left her out of all of the conversations and
arrangements around the funeral, and that totally made her absolutely
not ready to handle everything.
She saw life as something you had to live as hard as possible, as fast
as possible, but when life kicked back she had no defense at all.
A shame, and however we were already on a point of divorce, I couldn't
leave her anymore when she couldn't leave her bed anymore.
Love? No, absolutely not anymore! Of course, sometimes we loved each
other, and I am not talking about physical love, but mental love.
It is strange now I look back on those days. One side of me screamed to
get out of that bad marriage! We didn't fit to each other in any way! My
ideas about a marriage were totally different from her ideas.
Because my father left my mother and the children alone, marriage was
something holy for me. You started together, and nothing should be able
to get in between you. I believed that also from the marriage between
Bett and me. From the beginning of our marriage Bett let me know that
her ideas of a marriage were maybe different. I didn't exactly know what
she meant, but when we were married in the village of Bloemendaal she
was already flirting with the civil servant who did the marriage! And
don't think, at any time that I am kicking back at her after her death,
because she was proud of it!
So around the time that she came on her bed, 6 years after the date we
married, our marriage had almost fallen apart for a dozen times. I
think, I guess that only her grandmother kept the marriage together!
Very strange idea! One time I went back to my birth-house. Couldn't
stand her ideas about a marriage anymore! She proclaimed a free
marriage, free love, but as soon as she had disagreements during the
'time periods' she was out of our home, I had to solve these situations
for her as well.
But taking it back on her, even after having considered that a divorce
would be better now she couldn't get off her bed anymore?
That was too much for me. I thought by myself, and I told her, that she
could count on the fact I would take care of her, as long as she needed
me, regardless of the lifestyle she lead, and I disagreed with.
So life went on. In the beginning it was strange. She couldn't get from
her bed anymore, so all the things found place in that bed of course. We
used the bedpan for her, and of course I had to get her off again, and
clean her and so. After two or three times I was used to that.
Every day she threw up, not one bite of food she could keep in. She got
weaker and weaker. I went to bed at half eleven, and from that moment on
I didn't get any sleep. Had to go out of my bed again to give her the
bedpan, sometimes three times a night, had to clean up when she threw
up, and so on. She felt more dependent when I was lying in bed, so I
shortened my sleeping-time as much as possible. I went to bed at eleven,
and got out again at 5, 6 in the morning. As soon as I was on my feet, I
still walked in those days, she got calmed down, and wasn't afraid
anymore for, for instance sounds outside, sounds in the hallway, which
we shared with 9 other families, sounds in the street. Especially in the
later evening there was a lot of noise outside. People coming home out
of pubs, sometimes half drunk, making noise. And Bett got more and more
afraid of everything she heard. Paranoid even. When things stayed quite
calm, nobody came to visit us, no bad mail came in, then she got calmer
herself, but for instance, when Oma told her she came visiting us, and
Oma was the woman who took care of Bett almost from birth, because her
mother didn't want her, Bett got hyper-nervous. Throwing up day and
night, and the result was that I had to cancel her grandmothers visit.
That was not so easy as it sounds. When I took the phone, dialed her
number and she heard my voice, she knew how late it was. She didn't
accept the fact her granddaughter didn't want to see her, and whomever
told her she wasn't welcome got IT, right away. She called me names, and
not the most charming ones. I wasn't used to this verbal violence, and
was shocked!
And of course I didn't get back on her! She was in her late 70-th! An
older lady! Hehe, you forgot the word: lady, as soon as she was mad, and
opened her mouth! When she did that you right away could tell from whom
Bett had learned it!
Horrible, the words she threw at my (and our) head(s)!
The days crawled, as they never did before. The cause of that was that
those days were very long. From 5, 6 o'clock in the morning till 11
o'clock in the evening. Before Bett came on her bed I always went to the
supermarket for our groceries, but suddenly she developed a fear when I
went away. She started to hear things, and she asked me not to leave the
house anymore. We telephoned the supermarket and made a deal with the
owner that every week we called in our grocery-list, and on the end of
that day I called a cab, and the driver got the groceries, paid them,
and got his money back when he delivered them. I paid him at the door.
The taxi was paid by the Dutch government, so each month we send in the
tickets and got our money back!
But the result was that I didn't get out anymore either!
Two people caught in an apartment, or worse even, in a bedroom. Two
people that didn't love each other anymore, that stayed together because
of certain reasons!
A situation that was very explosive!
Rob
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Coughing May Help During Heart Attack
Polish Doctor Claims Simple Technique Works Like Do-It-Yourself CPR
By Peggy Peck
WebMD Medical News Reviewed By Michael Smith, MD
on Tuesday, September 02, 2003
Sept. 2, 2003 (Vienna, Austria) - If you're feeling chest pain and
there's no one around to administer CPR should it be needed, remember
this: cough. It could save your life, says one researcher at an
international meeting of heart specialists.
Tadeusz K. Petelenz, MD, a Polish cardiologist, is campaigning to
convince other heart specialists to back his "Cough-CPR" program.
Petelenz says that most cases of sudden cardiac death -- an immediate
shut down of the heart -- happen in the home (a heart attack, which is
brought on by a blocked artery, is the major cause of sudden cardiac
arrest, which is an "electrical" malfunction in the heart). By the time
help arrives the person is often unconscious, which makes life-saving
resuscitation difficult. He says his Cough-CPR can keep the heart
functioning long enough for help to arrive.
The mechanical action of the cough acts as a do-it-yourself CPR that
delivers needed thumps to the chest, Petelenz says. Those thumps
stimulate electrical activity in the heart and keep it beating. To
demonstrate the effect, he asked a reporter here at a European Society
of Cardiology press conference to find her pulse. "Now cough and feel
the difference." The journalist said she did "feel" a difference.
Cough ... 1, 2, 3
Petelenz describes his program this way: the patient is trained to cough
every one to two seconds in bouts of five coughs. This process is
repeated in regular morning and evening training sessions until the
patient can cough for as many as 10 to 30 coughs in each bout.
But learning the cough is only one part of the program -- patients are
also taught to recognize symptoms of sudden cardiac arrest: shortness of
breath, sudden nausea, dizziness, inappropriate sweating, blurred
vision, sudden weakness and trembling hands. These symptoms can occur
singly or in combination, he says.
To prove his point, Petelenz taught 115 patients with a history of
cardiac arrest symptoms to recognize the symptoms and initiate coughing.
The patients used the cough in "365 instances of perceived [warning]
symptoms of fainting. As a result symptoms disappeared in 292 cases and
only 73 cases needed additional medical assistance," he says. Moreover,
all the patients "survived until follow-up therapy was initiated, which
included pacemaker implants, heart surgery and medical treatments."
Petelenz, who carries stacks of pamphlets that describe the Cough-CPR
program, says he wants community organizations to teach his program just
as CPR is taught.
True ... But
Leo Bossaert, MD, executive director of the European Resuscitation
Council and professor of medicine at University Hospital in Antwerp,
Belgium, tells WebMD that he is not convinced the Cough-CPR works. He
says that the Petelenz study falls short of the scientific standards
needed to prove that a treatment works. "We don't know if these patients
had true cardiac arrest," he says. Moreover, the study didn't include
any comparison group so it is unclear if it was the cough that kept the
patients conscious or if they would have survived without the cough.
Bossaert says, however, that physiologically Petelenz is correct: cough
can be used to keep a patient conscious. "We've been doing this for
years in the cath lab," says Bossaert, who explained that sometime
patients have cardiac arrest symptoms while undergoing angiography -- a
dye test used to diagnose blocked heart arteries. When that happens, the
doctors tell the patient to cough until the spell passes.
Given the lack of evidence, Bossaert says it would be irresponsible to
recommend Cough-CPR training now. He says he also worries that
introducing a program like Cough-CPR could confuse the public, which
would further delay treatment. "We don't want someone to be coughing
rather than dialing the emergency number," he says.
Sources: European Society of Cardiology Congress 2003 Vienna, Austria,
Aug. 30-Sept. 3, 2003. Abstract 3751; Cough cardiopulmonary
resuscitation -- a life-saving strategy for patients at risk of sudden
circulatory arrest.
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The Folded Napkin
I try not to be biased, but I had my doubts about hiring Stevie. His
placement counselor assured me that he would be a good, reliable busboy.
But I had never had a mentally handicapped employee and wasn't sure I
wanted one. I wasn't sure how my customers would react to Stevie. He was
short, a little dumpy with the smooth facial features and thick-tongued
speech of Downs Syndrome.
I wasn't worried about most of my trucker customers because truckers
don't generally care who buses tables as long as the meatloaf platter is
good and the pies are homemade. The four-wheeler drivers were the ones
who concerned me; the mouthy college kids traveling to school;
the yuppie snobs who secretly polish their silverware with their
napkins for fear of catching some dreaded "truck stop germ"; the
pairs of white shirted business men on expense accounts who think every
truck stop waitress wants to be flirted with. I knew those people would
be uncomfortable around Stevie so I closely watched him for the first
few weeks.
I shouldn't have worried. After the first week, Stevie had my staff
wrapped around his stubby little finger, and within a month my truck
regulars had adopted him as their official truck stop mascot. After
that, I really didn't care what the rest of the customers thought of
him. He was like a 21-year-old in blue jeans and Nikes, eager to laugh
and eager to please, but fierce in his attention to his duties. Every
salt and pepper shaker was exactly in its place, not a bread crumb or
coffee spill was visible when Stevie got done with the table.
Our only problem was persuading him to wait to clean a table until after
the customers were finished. He would hover in the background, shifting
his weight from one foot to the other, scanning the dining room until a
table was empty. Then he would scurry to the empty table and carefully
bus dishes and glasses onto a cart and meticulously wipe the table up
with a practiced flourish of his rag. If he thought a customer was
watching, his brow would pucker with added concentration. He took pride
in doing his job exactly right, and you had to love how hard he tried to
please each and every person he met.
Over time, we learned that he lived with his mother, a widow who was
disabled after repeated surgeries for cancer. They lived on their Social
Security benefits in public housing two miles from the truck stop. Their
social worker, who stopped to check on him every so often, admitted they
had fallen between the cracks. Money was tight, and what I paid him was
probably the difference between them being able to live together and
Stevie being sent to a group home. That's why the restaurant was a
gloomy place that morning last August, the first morning in three years
that Stevie missed work.
He was at the Mayo Clinic in Rochester getting a new valve or
something put in his heart. His social worker said that people with
Downs Syndrome often had heart problems at an early age so this wasn't
unexpected, and there was a good chance he would come through the
surgery in good shape and be back at work in a few months.
A ripple of excitement ran through the staff later that morning when
word came that he was out of surgery, in recovery, and doing fine.
Frannie, headwaitress, let out a war hoop and did a little dance in the
aisle when she heard the good news. Belle Ringer, one of our regular
trucker customers, stared at the sight of the 50-year-old grandmother of
four doing a victory shimmy beside his table. Frannie blushed, smoothed
her apron and shot Belle Ringer a withering look.
He grinned. "OK, Frannie, what was that all about?" he asked. We just
got word that Stevie is out of surgery and going to be okay."
"I was wondering where he was. I had a new joke to tell him. What was
the surgery about?" Frannie quickly told Belle Ringer and the other two
drivers sitting at his booth about Stevie's surgery, then sighed: "Yeah,
I'm glad he is going to be OK" she said. "But I don't know how he and
his Mom are going to handle all the bills. From what I hear, they're
barely getting by as it is."
Belle Ringer nodded thoughtfully, and Frannie hurried off to wait on the
rest of her tables. Since I hadn't had time to round up a busboy to
replace Stevie and really didn't want to replace him, the girls were
busing their own tables that day until we decided what to do.
After the morning rush, Frannie walked into my office. She had a
couple of paper napkins in her hand and a funny look on her face.
"What's up?" I asked.
"I didn't get that table where Belle Ringer and his friends were
sitting cleared off after they left, and Pony Pete and Tony Tipper
were sitting there when I got back to clean it off," she said. "This
was folded and tucked under a coffee cup." She handed the napkin to me,
and three $20 bills fell onto my desk when I opened it. On the outside,
in big, bold letters, was printed "Something For Stevie."
"Pony Pete asked me what that was all about," she said, "so I told
about Stevie and his Mom and everything, and Pete looked at Tony and
Tony looked at Pete, and they ended up giving me this." She handed me
another paper napkin that had "Something For Stevie" scrawled on its
outside. Two $50 bills were tucked within its folds.
Frannie looked at me with wet, shiny eyes, shook her head and said
simply: "truckers."
That was three months ago. Today is Thanksgiving, the first day
Stevie is supposed to be back to work. His placement worker said he's
been counting the days until the doctor said he could work, and it
didn't matter at all that it was a holiday. He called ten times in the
past week, making sure we knew he was coming, fearful that we had
forgotten him or that his job was in jeopardy. I arranged to have his
mother bring him to work, met them in the parking lot and invited them
both to celebrate his day back.
Stevie was thinner and paler, but couldn't stop grinning as he pushed
through the doors and headed for the back room where his apron and
busing cart were waiting.
"Hold up there, Stevie, not so fast," I said. I took him and his
mother by their arms. "Work can wait for a minute. To celebrate you
coming back, breakfast for you and your mother is on me!" I led them
toward a large corner booth at the rear of the room. I could feel and
hear the rest of the staff following behind as we marched through the
dining room. Glancing over my shoulder, I saw booth after booth of
grinning truckers empty and join the procession. We stopped in front of
the big table. Its surface was covered with coffee cups, saucers and
dinner plates, all sitting slightly crooked on dozens of folded paper
napkins.
"First thing you have to do, Stevie, is clean up this mess," I said.
I tried to sound stern. Stevie looked at me, and then at his mother,
then pulled out one of the napkins. It had "Something for Stevie"
printed on the outside. As he picked it up, two $10 bills fell onto the
table.
Stevie stared at the money, then at all the napkins peeking from
beneath the tableware, each with his name printed or scrawled on it. I
turned to his mother.
"There's more than $10,000 in cash and checks on that table, all from
truckers and trucking companies that heard about your problems. "Happy
Thanksgiving."
Well, it got real noisy about that time, with everybody hollering and
shouting, and there were a few tears, as well. But you know what's
funny?
While everybody else was busy shaking hands and hugging each other,
Stevie, with a big, big smile on his face, was busy clearing all the
cups and dishes from the table. Best worker I ever hired.
Plant a seed and watch it grow. If you shed a tear, hug yourself because
you are a compassionate person.
(author unknown)
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"Live & Let Live"
http://clix.to/RobDerksema
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Subscribe: LiveAndLetLi-@topica.com
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To contact me:
rpk-@nf.aibn.com
Patsy Rideout
PO Box 377, Robert's Arm
NL, Canada A0J1R0
Take care of yourselves and your loved ones!
Patsy quoting Rob
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