Category Archives: Caregivers
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October 12, 2012Imelda’s Story:
I am a spouse of someone that was diagnosed with Pulmonary Hypertension almost 6 years ago. Although the therapy medications worked and helped for 5 years it came to a point where the medication stopped working for him and the only thing that could save him was a double lung transplant.
He was put on a transplant list at UCSD in August of this year. Just two months later he 
got the call this past Monday that they had a potential donor. He cried when he heard the news. Two hours later from having had received the call we were at UCSD waiting to hear if the lungs were a match. At 11 :00p.m. that night the doctor came out to let me and his siblings know that the surgery was a go. On October 9, 2012 my husband received a second chance at life without PH. Never give up and always keep the faith.
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Keli’s Story:
My mom, Nelda Backus, suffers from Pulmonary Fibrosis and has been kept alive only via medications. In one month, her cost of the medication escalated from $447 to $1894 per month. My dad had always handled anything to do with mom’s medical issues, but we lost him last October. My sister and I were aghast at what the pharmaceutical company had done and didn’t know what to do to help our mother. Please understand that we are 
talking about a widow who receives $2013 a month in social security benefits. We started calling everyone and anyone we could that might possibly be able to help, only to be turned away time and again because her medication hadn’t been traditionally approved for her illness. Then we were fortunate enough to find out about Caring Voice Coalition.
Caring Voice did everything but stand on their head to ensure that she was able to receive the medication that has kept her with us since 2003. There was a young woman there named Tye who has held our hand through the process and who fought the battle for us! Tye called me to let me know that they would be issuing a grant for my mother that would greatly offset her costs and allow her to be able to buy groceries each month!
Our family owes the Caring Voice a debt of gratitude and we can’t speak highly enough of what they did for our mom. Please get out your checkbook and donate to the cause. They help so many people who are just like my mom, living on a fixed income with no way to generate enough income to pay the rapidly accelerating costs of medicines. I truly believe that they were put in our path by a higher power and that we are blessed to have found them!
Posted in Caregivers, Diseases, Featured, Media Center, Uncategorized | Tagged caregivers, chronic illness, Coping, Medical Bills, Pulmonary Fibrosis, Pulmonary Hypertension, Transplants | 1 Comment
Have you seen the Caring Voice Community?
April 26, 2012We told you last week about the Caring Voice Community, our new magazine. If you’ve not gotten your copy yet, here’s what you missed!:
In late January, I traveled to downtown Manhattan with the sole intention of taking pictures of Dennis Stavropoulos at Ground Zero. I had met and spoken with Dennis several times, including conducting two phone interviews for this story. I had talked to him at great lengths about his time as a detective with the New York Police Department. About how he, and the rest of city’s responders, had been dispatched to lower Manhattan after two planes flew into the World Trade Center buildings. His story, while harrowing, was missing context – it was missing the accuracy of visual imagery. So I proposed that we meet, visit the 9/11 Memorial, and reminisce, which he was fine with, until the day came.
“We were down there to do a job.”
I met Dennis on the corner of Albany and West Streets, directly across the street from the Memorial. When he showed up, his obvious anxiousness made it clear that he did not want to go in. He’d been there. He’d seen it. He’d stood beneath the tower that looked like it had “been hit by Godzilla.” He had witnessed. He had worked. And he had no interest in going back. How, or why, could I argue with him? What he soon proposed was an impromptu tour of New York City and its surrounding boroughs. New York through his eyes. I’ve been to New York dozens of times, but as I soon learned, you haven’t seen New York until you’ve seen it through the eyes of a New Yorker.
Dennis Stavropoulos was born and raised in Brooklyn, NY. He grew up as a part of what he 
describes as the final stickball generation. A neighborhood boy. And as we walk around the streets he was raised in, he describes the “true” New York from his youth. The French Connection New York – with the subway cars tagged heavily in graffiti. The Son of Sam New York – when members of the neighborhood put aside their differences to combat a local terrorist. The Taxi Driver New York. “Taxi Driver is the New York from my childhood,” he said through a deep, purposeful Brooklyn accent. “You’d walk down 42nd street and you’d see it all: the X-rated theaters, the casual drug use, the casual theft, now there’s a Disney store on 42nd street. It’s a very different city today.”
It’s interesting to hear Dennis relate his early years to so many different films, because that is exactly what his latter years reflect: the framework of an influential motion picture.
New York Undercover
When he was 21 – after high school and a bit of college – Dennis became an EMT based out of Bellevue hospital, responding to shootings, overdoses, baby deliveries, you name it.
After six years, he joined the police academy on a whim of encouragement from some of his friends who were doing the same.
“I went undercover…I mean REAL undercover.”
“Joining the police department wasn’t really something I had always thought about,” he said. But soon after graduating from the police academy, he was walking his own beat – responding to calls, taking reports, making arrests, and so on.
Looking to make a career out of the NYPD, he transferred to narcotics, which he describes as a dangerous but exciting way to move up in ranks within the department.
“I went undercover, not just in plain clothes, I mean real undercover,” he said. Walking past Washington Square Park, for example, he tells me how he used to buy crack from drug dealers in the park, and watch from afar as police would raid the park moments later. “That was the job – setting up drug deals, working the players of that culture.”
In 2001, after he had made detective for “flourishing” as a narcotics officer, his undercover assignment ended. And then it happened.
Complete Chaos
On the morning of Sept. 11, 2001, Dennis was assigned to work an election poll in uptown Manhattan. When news broke that a plane had hit one of the towers, Dennis waited eagerly for instructions from his command. Then the second plane hit. Then the first tower fell. Dennis closed down the poll and was ordered downtown.
“By the time I got down there, the entire city was covered in a thick, dark cloud of smoke,” he said. “There was a layer of debris in the streets, people were running, screaming everywhere. It was complete chaos.”
Upon arriving downtown, Dennis was assigned to help secure the site, which he continued to do for several weeks following the attacks. For months after, Dennis worked on a landfill in Staten Island, sifting through the debris of the World Trade Center.
“You just have to keep doing what you’re doing.”
“We found everything at the landfill,” he said. “Bones, body parts, wallets, firearms, bullets, office supplies – everything. I didn’t really think about the bigger picture of it all while I was there.”
It is because of his time cleaning up debris downtown and at the landfill that Dennis remains averse to visiting Ground Zero.
“It’s difficult to explain,” he said. “We weren’t down there working as heroes. We were there to do a job. We worked at least 16 hours a day, digging up everything you can imagine. We didn’t reflect or pause. We worked.”
Every night, he’d go home and wash the dust out of his eyes and ears, and blow the dirt and grime from his nose. He’d sleep whatever few hours he could, wake up, and do it all over.
Jump ahead eight years and Dennis, now working in the medical examiner’s office, became very ill very quickly. Breathing had become more difficult, and his level of energy was often flat lined.
“I was always healthy, I could do anything,” he said. “I was very active. I played on the softball team at work, I was always a golf junkie; but in 2009, things had really gotten worse for me.”
Jumping Hurdles
After several visits to the doctor, Dennis was diagnosed with Pulmonary Hypertension, a disease that causes abnormally high blood pressure in the arteries of the lungs. The disease, which currently affects nearly 30,000 Americans, is often fatal, and has yet to be issued a cure.
“When I left the hospital after being diagnosed, I was told what I had, but I wasn’t told the full extent of it,” Dennis said. “So I went home and started researching online, and that’s when I realized how fatal this disease is.”
After jumping through the many hurdles of health insurance bureaucracy, Dennis finally found a specialist that not only accepted his insurance, but that he trusted as well.
“Finding a specialist was a very difficult process,” he said. “But the cost of finding one you trust makes all the difference.”
“…That’s when I realized how fatal this disease is.”
Dennis has been taking Tracleer, a popular medication that helps combat the symptoms of PH, since early 2010, which he says has greatly improved his overall well being.
“Life is harder now, there’s no question,” Dennis said. “If I don’t think and I start doing something physically demanding, I’m soon reminded that I can’t do that. And although I have to take everything a little bit slower, I see such a difference with that drug.”
When asked if his Pulmonary Hypertension is directly related to his clean-up work post-9/11, he responds directly, nobly. “I certainly was breathing in a lot of dust and toxins,” he said. “I know other people with PH who also have other issues – emphysema, sarcoidosis, things like that. But my Pulmonary Hypertension stands alone, and the doctors don’t exactly know why. It would be presumptive of me to say 9/11 caused my PH, but it would seem plausible.”
Moving Forward
Today, Dennis lives in Staten Island near the base of the Verrazano-Narrows Bridge, or “the Saturday Night Fever bridge,” as he often calls it, working restricted duty for the medical examiner’s office. On days he has appointments with his doctors, he takes the 25-minute ride on the Staten Island Ferry to downtown Manhattan. On those days he likes to walk around the city, taking it all in, thinking, remembering.
He’s thought about leaving the city when he retires, but he can’t decide whether the demands of the hustle bustle outweigh its excitement.
When he isn’t working, he plays golf when he feels up for it, eats slices of square pizza in Brooklyn with his friends, and checks in on his parents every weekend. While watching the sunset from his apartment balcony, I ask him if Tracleer helps to reinstate some of his physical strength, where does he find the emotional strength to carry on? Given all he’s seen and been through, what makes it worth it?
“You just have to keep doing what you’re doing,” he said frankly. “You have to get to work to pay the bills. When you’re diagnosed with something and considered disabled, it’s easy to get down. There are good days and there are bad days.”
“But you have to wake up. You have to keep moving.”
By constantly moving, Dennis’ story continually evolves. The old maxim states that every New Yorker loves and hates the city that never sleeps both equally. Dennis would love to move away, but he’d hate to be far from his family. He’d hate to leave the energy, but he’d love to be somewhere warm. What will be next in this life filled with such cinematic virtues? I’m not sure. I guess we’ll have to wait for the sequel.
By Alex Withrow. As told to Alex and Taylor Scott. Photos by Alex. The Story is all Dennis.
Posted in Caregivers, Diseases, Events, Featured | Tagged 9/11, Dennis Stavropoulos, Pulmonary Hypertension | 1 CommentThe Stress of Being a Caregiver
January 25, 2012Having a loved one that is dealing with an illness or disease is a hard pill to swallow. From the moment of diagnosis, your life is changed. If your spouse has Huntington’s Disease, then you are equally affected. If your child has Factor XIII Deficiency, then you are dealing with a deadly clotting disorder.
The stresses and worries that plague a person with one of these conditions strike the caregiver as well. Your health and well-being is every bit as important as the health and well-being of the patient.
A study conducted in 2004 by AARP and National Alliance for Caregiving estimated that there are over 44 million adults who provide a level of care for a friend or loved one. This represents over 20 percent of the adult population. These selfless people provide a free service valued at over $250 billion dollars in about 20 percentof the homes in America.
The study asked caregivers about the Level of Burden in the care that they provided and used that as a measurement against the perceived health of the caregiver. The Level of Burden was a 5-point scale with simple tasks rated a 1 and difficult tasks rated a 5. They also created an index based on the level of burden, the activities of daily living, and the amount of time dedicated to caregiving. Nearly 20 percent of the people polled said that they provide more than 40 hours of care per week. Over 80 percent were caring for a family member. Over half were managing care for someone and working at the same time, and over 60 percent were married or living with a partner. That’s a lot of juggling. Most of these people provided this care for at least four years.
When asked, most of the people surveyed said that being a caregiver wasn’t that hard physically, and not very emotionally stressful, and not a financial burden. Of the ones that responded with a high level of stress or strain, they generally said that they didn’t have a choice of whether or not to be a caregiver. These respondents also reported a lower sense of their own personal health. About half of these folks said that they needed help to manage their stress. They were also more likely to spend more money on the person in their care than they did on themselves or their loved ones. Over a third had asked for information on getting financial help for the person in their care.
The troubling thing is that the person in their care will often not be getting any better.
The American Psychiatric Association recently updated their list of what qualified as a mental disorder. New on the list this year is ‘grief’. As you deal with the loss or decline of a loved one, your mental condition is on the same list as ‘autism’ and ‘psychosis’. In many cases, the grieving process starts before the actual death. Add that to the burden of being a caregiver.
What is your outlet for dealing with this stress?
Lee Ann Cox is writing a book about the loss of her husband. She expressed her feelings daily over Twitter and is weaving this 140-character-per-page diary into a narrative about the toll that his cancer took on her young family. It was a way for her to scream out loud as her world crashed around her. How will you know when it is time to scream out loud? When is it time to cry out for help?
Listen to yourself. Do you feel as if you’re never rested? Do you have flashes of anger at those around you? Are you unable to eat or sleep? Have you noticed issues with the person in your care, like missed medication or skin problems? You have to care for yourself if you wish to have any hope of caring for another.
The first step is to define the reality of your situation. What is the prognosis of the person in your care? Be informed, and know what is coming in the days, weeks, and years ahead. Defining this reality will help you to be better prepared and have a plan for if and when things seem to go from bad to worse.
Part of your plan needs to include time for yourself. Are you able to engage others in your caregiving? Many parents commit to a specific ‘date-night’ and point to that
as a key to a healthy relationship. Is it possible to arrange a ‘sitter’ for the person in your care?
It’s important to have hope. Hope is contagious, and while your hope may be different than the person in your care, it’s still important to care. Perhaps it is the small hope for a miracle cure; perhaps it’s hope for a better today. Either way, it’s hope.
Posted in Caregivers, Featured, Uncategorized | Tagged Alzheimer's, Congenital Factor XIII Deficiency, Huntington's Disease | 3 CommentsA Home Away From Home
November 30, 2011If you are dealing with a chronic disease, life can be pretty complicated. There
are mountains of insurance forms, rivers of medical bills, oceans of procedures,
appointments, and a general disruption of life. Those of us at Caring Voice Coalition know this. You often count on the love and support of your family, but what if they aren’t around?
For many sufferers of chronic illness the treatment that is needed is not offered at
the local pharmacy. Your family practitioner may not have the training or tools to
help you. You may have to travel far from home to receive treatment. Does that add
to the mounting stress of dealing with an illness?
Fortunately, there may be a resource for you. The Hospitality House.
On January 14, 1972, Cyril and Claudia Garvey lost their 13-year-old son to cancer. Kevin had fought the brave fight, and received extensive treatment at Roswell Park Cancer Institute in Buffalo, New York. The Garvey’s were from Sharon, Pennsylvania, and made frequent trips to Buffalo for Kevin. They stayed in hotels, slept at the hospital, and did whatever they could do to be there for their son.
The cancer community is like many, and you bond with similar people. During Kevin’s treatment, the Garvey’s met many families who were unable to afford any sort of lodging during the care of their loved one. They stayed in treatment rooms, cafeterias, and often in their cars.
The Garvey’s leapt into action, and started a fund to purchase property near the centers where Kevin was being treated. After finding a suitable location, volunteers donated paint, furniture, and sweat, and on July 26, 1972, The Kevin Guest House welcomed its first guests.
The Kevin Guest House spawned The Ronald McDonald Houses, the American Cancer Society’s Hope Lodges, and numerous other Hospitality Houses across the country and the world. Today they are part of a network of over 200 nonprofit organizations throughout the United States.
Not every Hospitality House is the same.
Most will take anyone, regardless of income. Rates for staying at a House range
from $15 to $60. Most of them count on donations and grants to keep the cost to
families in medical crisis low. The basic mantra at a Hospitality House,
however, is “Get Here, Get Better, and then we’ll figure out the finances.”
Many of the Houses invite people in treatment, and welcome their families. Some
cater specifically to a particular disease, and some are just for patients or just for
families.
Pittsburgh’s Family House operates four facilities around the University of Pittsburgh Medical Center. Together they offer 163 rooms and suites for patients and families.
The Helen K. Rossi House in Iowa City, Iowa is a 30 room facility near the University
of Iowa’s Children’s Hospital that caters specifically to the families of patients.
The Sumner Foundation Hospitality House in Gallatin, Tennessee is a 4-bedroom
home that calls itself “The Little House With A Big Heart.”
All of these facilities have something in common: A Home Away From Home. They
strive to provide a sense of normalcy during a very trying time. A guest at a House
in Kentucky was spending time with a young son going through treatment. She
found herself saying, “Going home. See you in the morning,” as she left the hospital.
She had a chance to cook herself a meal, do some laundry, and know that her child
was right next door.
If you or a loved one is pulled far from home for a life-saving treatment, talk to the
folks at the facility. If you’re lucky, there is a Hospitality House right next door! You
could have a Home Away From Home!
Lift Caregiving: Methods of Better Care
October 11, 2011In February of 2011, Katie Gilstrap did what people who have an idea for a startup company rarely do. She jumped.
While working for a community bank in Richmond, VA, Gilstrap became aware of a lack of support among family caregivers. At the bank, she was tasked with creating a product to help caregivers financially, but in her research, she realized money wasn’t enough.
“A lot of folks didn’t understand the full extent of the services available to them,” Gilstrap says. “The overwhelming response we got through interviews [at the bank] was, ‘Thank you for the response to our financial needs, but we have larger, more comprehensive issues here.’”
Earlier this year, Gilstrap and her colleague, Ted Ukrop, started Lift Caregiving, a resource that informs and assists caregivers on how to better care for their loved ones.
“We started Lift Caregiving because we realized that there was a huge need for caregiver support,” Gilstrap says. “We’re connecting people to the resources that will help make their experience easier. We also help counter the isolation people often feel when caring for a loved one by allowing them to connect with others who may be going through the same thing.”
What Lift Caregiving provides, essentially, are methods to explore better care. On the company’s website, caregivers can seek free advice – tips and insights in a multitude of areas including adult day services, end of life care, etc. – search for nearby providers, shop for useful products, and so on.
If a person, for example, cares for someone with Huntington’s disease, Lift Caregiving’s website would grant them a plethora of knowledge on how to provide better care, as well as offer support on how to manage their care and the stress often associated with it.
While the bulk of content on their site is aimed at those in the aging population living with serious illnesses, Lift Caregiving, Gilstrap says, has nowhere to go but up.
“We want Lift Caregiving to go as far as it can,” she says. “With the exception of our services section, which is currently for Richmond-area residents only, everything on our site is accessible from anywhere in the world.”
Their expansion, Gilstrap says, will soon take form by adding more services to their website, hosting community events, and establishing firm partnerships with local businesses, as they did with Caring Voice Coalition in April.
“CVC’s work improves the lives of people across the country every day, and we are grateful for the opportunity to offer our resources to their network of patients,” Ukrop said in a prepared statement.
According to CVC, their partnership with Lift Caregiving will help expand the reach of free resources for family caregivers.
“CVC understands the importance of family caregiving,” says Taylor Scott, Marketing Manager of Caring Voice Coalition. “We believe that our partnership with Lift Caregiving is an important way to expand our network of support and provide much needed resources to the family members and loved ones caring for our patients.”
If Lift Caregiving has found early success in targeting a specific niche, it can be credited to Gilstrap and Ukrop’s determination in implementing their vision, a notion Gilstrap offers words of advice on.
“It’s important to do your homework [when starting your own business], because there is a lot of risk involved in an economy like this,” Gilstrap says. “The difference in being your own boss is that you never really have time off. You have to love and nurture your idea because it will always need attention. We’re fortunate because there is such a big need for the services we provide. The sky’s the limit.”
Posted in Caregivers, Featured | Tagged care, caregiver, caregiving, CVC, disease, health, Huntington's, illness, Richmond, RVA, small business, startup | Leave a comment ← Previous post Next post →
