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People are always there in the beginning. To help. To talk.
To laugh. To cry.
But as time passes, the visits decrease. It’s hard to find
things to talk about. Your life is so different now. Nothing is the same ...
and never will be.
After a stroke it’s the isolation that is hard to deal with,
said Kathy Doak, whose husband, Mark Doak -- a former Nebraska football player
and 1975 sixth-round draft pick of the NFL team in Washington -- suffered one
in 2011.
You don’t do the things you used to do. Heck, you don’t even
leave the house. It’s too much work. You’re so exhausted -- even picking up the
phone to say "Hi" is overwhelming, Kathy Doak said.
So when stroke survivors and their caregivers -- typically a
spouse, a child or a sibling -- are invited to attend the annual Retreat
& Refresh Stroke Camp, their initial reaction is somewhere along the
lines of: Are you nuts?
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| Goldie (caregiver) Jackie (survivor) |
That is exactly what Goldie and Jackie Goldsmith of Lincoln
were thinking when their doctors, nurses and therapists kept telling them that
they “really needed to go to Stroke Camp.”
“We don’t get out and do a lot of things anymore -- because
we can’t,” said Jackie, who suffered a stroke in November 2010.
“We kind of had to be talked into it (camp),” she said of
their first camp experience in 2012. “Now we look forward to it every year. We
meet some of the same people and meet some new people. We laugh a lot. It’s
good medicine for you.”
Retreat & Refresh Stroke Camp -- as the name implies
-- is a 48-hour summer camp complete with camp songs and slogans, arts and
crafts, games, bonfires, fishing, canoeing and paddle boating.
“Survivors and caregivers have that perception: we can’t do this.
That going to camp is like climbing Mount Everest,” camp director Larry Schaer
said. “They have a perception of what they can’t do -- not what they can do.”
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| The camp is housed here at the Swanson Center |
The Lincoln Stroke Partnership -- a collaboration among
Bryan Medical Center, Saint Elizabeth Regional Medical Center and Madonna
Rehabilitation Hospital -- and Retreat & Refresh Stroke Camp host the
two-day event at Carol Joy Holling Conference and Retreat Center in Ashland.
This year’s camp, held Aug. 16-18, included 20 couples -- 10
stroke survivors and their caregivers -- 15 volunteers and five camp staffers.
Volunteers take care of everything, so caregivers truly have
a weekend respite -- a weekend with massages, manicures, pedicures, facials and
other spa-style pampering, along with campfire songs, stories and skits. A
weekend where they don’t have cut their survivor’s food, help them use the
bathroom, keep a watchful eye every second.
“Just to see the people and be able to enjoy normalcy and
have fun with the survivor is wonderful,” Kathy Doak said.
A loving partnership turns into a full-time role of nurse,
therapist, maid, cook, custodian and family CEO.
“When volunteers take over all the duties, when they take
the load off the caregiver, it is just so relaxing," Kathy Doak said.
"The stress reduction from that weekend is awesome.”
They have fun like they did B.S. -- Before Stroke -- before
they were known as survivors and caregivers.
“Most events after stroke are not joyous," Mark Doak
said. "But Stroke Camp is a celebration of life.”
***
Camp begins in a circle. In the middle are drums,
tambourines and other music makers. Jenny Denk, a music therapist, gives each
camper an instrument. Returnees know exactly what they want. Newcomers are
wary.
But in minutes they forget to be shy, banging and shaking
out beats as they introduce themselves, and call out their favorite fair food
(in honor of this year’s camp theme: Meet Me at the Fair).
The ice is broken.
Survivors and caregivers divide into separate groups.
Another chance to get acquainted -- this time with others living the same
trials, tribulations, heartbreak and exasperation.
They share top of the mountain and bottom of the valley
experiences.
Stroke survivors let go of some of the frustration, the
anger, the resentment and self loathing. They hate being a burden.
“Everybody wants as close to a regular life as they had
prior to the stroke,” Mark Doak said. “They want to be independent. They want
to do things for themselves; not bother their spouse.”
Abilities they used to take for granted: getting a cup of
coffee, making a grilled cheese sandwich, taking a shower, wiping your butt and
killing the snake that slithers onto your front walkway in front of your wife
and dog …
“All those things husbands just do -- now it has to be done
for me,” Mark Doak said. “There has to be some anger for the caregiver. Some
thought of: I didn’t sign up for this.”
Sentiments are the same for the survivor, but for different
reasons.
“She is my keeper. I’m in the cage” Mark Doak said.
Kathy chokes on a laugh: “But what a nice cage it is!”
“I rattle the cage doors frequently and they never get
open,” Mark said, not so subtly referring to his desire to drive again.
“I would gladly give the keys back if it was safe,” Kathy
replied.
Across the hallway caregivers reluctantly put into words the
tornado of emotions they have fought so hard to control -- and ignore.
It feels like you’re:
* A rubber band being stretched more and more
* A piece in a jigsaw puzzle, continually trying to figure
out how it fits.
* A paper clip struggling to hold it all together all by
yourself.
“A marble, ‘cuz I feel so much like I’m losing mine,” a few
say.
Kathy Doak remembers her first stroke camp in 2012 and
hearing the stories of returning caregivers.
“I thought: I’ll never get there. I’ll never get to the
level of assurity that it will get better,” she recalled. “Everyone was so very
encouraging. It was heartwarming.
One year later, Kathy Doak is now reassuring newcomers: It
is OK to vent. It is good to laugh and cry, and glom on to the faith that this
“new normal” can get better over time.
“Stroke camp is the ultimate release for feeling normal
again,” Mark Doak said. “Stroke Camp is a safe place to break down the wall
that everybody puts up and just go for it.”
* * *
Marylee and John Nunley of Peoria, Ill., held the first
Retreat & Refresh Stroke Camp in 2001. The couple had always camped.
Then John suffered a stroke. Marylee took care of him 24/7. A weekend off was
an impossibility -- never mind the the prospect of camping again.
What if … Marylee wondered.
She hosted the first-ever camp inviting local fellow stroke
survivors and their caregivers to a carefree weekend where disabilities and
brain injuries were handled with such ease, it was like the old days -- Before
Stroke. Where caregivers were the ones being cared for, pampered and treated
like the heroes they are.
“That first camp was such a success that the next summer
they held two camps, and the year after they held four camps,” Schaer said.
The camp focus is four-fold: educate, socialize, relax and
support.
The 2013 camp at Carol Joy Holling Retreat Center was
Lincoln’s third; and the 77th overall for Retreat & Refresh Stroke
Camps held throughout the United States. All told, there will be 17 or 18 camps
throughout the country this year. Next year, that number no doubt will climb to
at least 20 -- odds are Lincoln will hold two camps. This year, six families
were on waiting lists in case space opened up.
Stroke Camp is costly to put on, Kathy Doak said. All but a
few thousand of the $20,000 price tag is funded by donations and fundraising.
Stroke families are asked to pay $100 per person -- for some that is fantasy,
which is why hopes are the Lincoln Stroke Partnership might raise enough money
to provide camp scholarships.
***
Simply put, a stroke is a brain injury.
“A brain attack,” Kathy Doak said. “The effects are not just
physical. ... Every part of your being is affected.”
“Your life and everybody else's is turned upside down,” Mark
Doak added. “A stroke is forever.”
Which is why strokes are so isolating.
“There are 7 million people out there with strokes --
without having any connections and support other than family,” Schaer said.
“Camp is a critical element of support for survivors.”
Bob Becker has attended all three Lincoln Stroke Camps.
He had his stroke April 1, 2010.
“A bleeder on my left side,” he said. An avid fan of
television medical shows, Becker said he realized quickly the numbness and
clumsiness in his right hand was a symptom of a stroke.
“Thank goodness for cell phones,” he said, noting that a
freak outage had left landlines useless that day in Lincoln.
Becker called a family member: I think I’m having a stroke.
When the family member started asking questions, Becker stopped him: “If you
keep talking to me I might not be alive in a couple of minutes.”
An ambulance arrived a short-time later.
“By the time I got to the hospital I had slurred speech and
was not able to use my right hand or leg.”
The recovery has been long and slow. But with persistence
and perseverance progress is made.
“Watching people gives me hope,” Becker said, recalling the
camper whose stroke left him unable to speak for five years. Last year, he got
up and told a joke at camp. Fellow campers were laughing and crying at the same
time.
In the 800,000 stories of stroke each year, Becker’s
awareness is unique, Schaer said.
“Only 20 percent of people know the signs and symptoms of
stroke," he said. “Eighty percent have no idea of the signs and the
urgency of the matter.
“Only 20 percent of people having a stroke make it to the
hospital within a three-hour window to receive TPA (a clot busting drug),
resulting in minimal to no deficits.
“With 800,000 people a year having a stroke and with only 20
percent of that population getting to the hospital in time, that means 80
percent are losing a lifetime opportunity. Once that window of opportunity is
missed, you don’t get a second chance.”
The symptoms sound straightforward:
* Sudden numbness or weakness in the face, arm or leg,
especially on one side.
* Sudden confusion, trouble speaking or understanding.
* Sudden trouble seeing in one or both eyes
* Sudden trouble walking, dizziness, loss of balance or
coordination.
But most people ignore the symptoms -- reasoning they are
tired, stressed or getting sick. Many take an aspirin and a nap hoping it will
just go away, Schaer said.
And if they are having a mini-stroke, a TIA (Transient
Ischemic Attack), it will go away as suddenly as it appeared. But it will come
back -- with a vengeance. Up to 40 percent of all people who experience a TIA
will go on to have an actual stroke in the next 12 months. Nearly half, will
have a stroke within two days of a TIA.
“Lack of understanding is a major issue. If we could fix
that, hundreds of thousands of people could have minimal effects,” Schaer said.
Chuck Jones, administrative assistant at Stroke Camp, lost a
cousin three weeks ago to stroke.
It started with a mini-stroke. Her words suddenly became
garbled. Well-meaning friends told her to relax. She did. Her speech returned
to normal. The next day she had a terrible headache. She took aspirin and a
nap, and declared upon waking that she never felt better, Jones said.
“The third day she suffered a massive stroke and died that
night.”
* * *
Stories of delay and denial are the bane of stroke survivors
and families.
Nearly every survivor will tell you that whether they knew
what was happening or weren’t quite sure -- they all held on to the belief it
could not happen to them.
And sometimes stroke symptoms are not all that obvious -- at
least not enough to feel like you need to head to the emergency room.
Jackie Goldsmith says hers began with her leg. Her husband
noticed she was walking funny. Over the next two days, she relied on the strong
stable arm of her grandson as she shopped.
“I was still walking, but it was like I was drunk or drugged
or something,” Jackie recalled.
Her husband suggested they call the doctor. He ordered an
MRI. Physically she was reeling a bit as she attempted to walk out of the
medical center. They sent her straight to the hospital.
“After that I couldn’t stand,” Jackie recalled.
Lincoln’s Larry and Lori Obrist are both stroke survivors
and caregivers. Larry had his stroke December 2005; Lori’s was March 2010.
“I pretty much knew and feared I was having a stroke, but I
desperately did not want to believe it was happening to me,” said Larry Obrist,
a retired mental health social worker at the Grand Island Veterans Hospital.
“It just seemed like my leg was going to sleep.”
Back in 2005, administering clot busting TPA was not
standard protocol -- especially if your stroke score was low, like his.
“I could walk, and talk; I had no vision or speech problem,
but terrible weakness on my left side,” he said.
Today, he would have been considered a prime candidate for
TPA.
To look at Obrist, you would think he has suffered no
lasting effects. He knows otherwise.
His ankle gets spastic, his foot swells with fluid, his
balance and agility are not dependable.
Lori Obrist’s stroke was different. A nurse, she didn’t see
a need to rush to the hospital She had a TIA. Miscommunication and lack of
understanding as to what was happening, resulted in her having a stroke. Larry
Obrist can’t hide his frustration. He takes every opportunity to tell people
about stroke.
“My two cents: Take the stroke education that you have
learned and take it to your communities and families. If we can prevent one
person from having a stroke (it) will have done enough. ... Do not let your
family or the doctor take a TIA for granted.”
All things considered, Larry and Lori Obrist are lucky. But
they could have been much luckier, if they had had been proactive and
aggressive, he said.
Paul Eide and his wife, Bev Linder Eide, are relative
newcomers to the world of stroke. This was their first camp.
Married just 10 years, both have buried their first spouse.
On June 19, 2012, Paul went in for shoulder surgery. Four
days later he had a stroke -- a clot in his carotid artery.
The stroke left Paul with physical disabilities. But for Bev
the biggest adjustment is emotional.
“His personality has changed,” she confided.
That’s a very common result of strokes.
Kathy Doak states it matter of factly: “Mark lost his filter
after the stroke.”
Mark Doak had his stroke at 11:11 a.m. Nov. 11, 2011.
“I rode in ambulance 111, and was put in room 11 at the
hospital,” he said.
“Guess what’s not my lucky number,” Kathy quipped.
The couple was on vacation in Florida when Mark fell over a
plastic lawn chair. He figured he tripped. Kathy knew immediately it was
something more.
“His speech was slurred. He couldn’t sit up,” she said.
It was about a year before he could really sit up on his
own.
“I was a lump. Now I’m a sugar lump,” he joked.
Mark has always been gregarious and outspoken. He fills a
room -- and we’re not just referring to his 6-foot-4, 300-pound frame.
While in therapy at Madonna he earned the name: “Captain
Inappropriate.”
“I apologized for him a lot,” Kathy said.
These days he’s not quite as inappropriate but his humor
teeters on the edge of risque. He likes to talk, and is not as attuned to
social norms as he was Before Stroke. But his personality is a boon to fellow
survivors -- he gets them out of their shell, gets them playing bingo, watching
movies, living again. Mark and Kathy say survivors and caregivers need more
than just one Stroke Camp a year.
Lincoln’s Joann Keller concurred. Camp gives you
perspective, she said.
“When I went to Stroke Camp I felt like ‘Oh, I have it so
bad.’ I felt so sorry for myself,” she said, referring to herself and her
husband, Arnold Keller, who had his stroke in 2004. “Then I see other people
and hear their stories and realize I don’t have it as bad as I thought. We are
sitting pretty good.
“It is the most enlightening best time. It is probably one
of the most most rewarding events I partake in. In 48 hours, you become really
wonderful friends. You do not care to leave. You feel like you have actually
been loved and the love is very generous.
“It is so rewarding. I feel like I am in a good place today
because it gave me a good shot.”
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