The Rewards of Devotion: Three CFS Patients and Their Caregivers
April 20, 2005
The rewards of devotion
Three cases of chronic fatigue syndrome make it clear: With the burdens of adult caregiving also come blessings
By BILL MARVEL/The Dallas Morning News
Lois Sieverling, 75, suffers from emphysema and the effects of a 1998 heart attack. She lives in Euless, Texas with her daughter, Carol, 47. Or, rather, Carol lives with her mother. "We're at that stage normally where I would be helping her," Carol says. But that's not the way things have turned out.
The roles in this mother-daughter relationship reversed on the day, almost 18 years ago, when Carol came home from the Virginia seminary where she was studying for the ministry. She had the mysterious and debilitating illness known as chronic fatigue syndrome (CFS).
When the same disease struck Joy Paprskar, her husband, John, took over cleaning, cooking, getting the children to and from school and other activities. He also assumed responsibility for his wife's medical care, doggedly searching for the right doctor, the right treatment and the right environment that might ease her suffering.
Tim Hauser put aside dreams of starting a band to care for Gaylyn McCarty. They met and fell in love three years after she came down with the illness, and they hope to marry – when she is well enough.
Look across the table at your husband or wife, your child or parent, your constant companion or loved one: Sooner or later, one of you will be sick, suffer an injury. And then the other will become a caregiver. It may be just a case of the flu, or it may be something more serious: a heart attack, a stroke, cancer. It may be something chronic and life-threatening such as CFS, a condition that can drag on for years with little hope of recovery. One of you will end up at the other's bedside. There will be challenges. But there will also be compensations.
"Coping with a severe illness will be a part of every relationship if it lasts long enough," says Laura Hillenbrand, the author of Seabiscuit, the award-winning biography of the famous racehorse.
Ms. Hillenbrand should know. She was still in college when she came down with CFS. The young man in her life, Borden Flanagan, struggled, then made a decision to stand by her. Sixteen years later, he is still at her side, providing the kind of support that has made all the difference.
"I don't think I'd be around now except for Borden Flanagan," she says. "The years I was barely able to roll over in bed, the times I couldn't feed myself – emotionally, I don't think I could have survived."
And yet studies suggest the path of the caregiver is not a one-way street. The benefits can flow both ways, says Dr. Leonard Jason, a DePaul University psychologist who has studied CFS patients and their caregivers.
For patients, there is less fatigue. When there is someone else to take over basic tasks, Dr. Jason says, "then you have energy left to socialize." For caregivers, the role can bring more satisfaction and less stress, he says. There are even studies suggesting that caring for others may enhance the caregiver's immune system.
Not all caregivers choose their role, Dr. Jason says. Sometimes it's thrust upon them by family connections or expectations. And many who are faced with the prospect of caring for a chronically ill loved one simply leave. Studies show that 85 percent of marriages in which there is chronic illness will end in divorce.
But it need not be so, says Dr. Jason. "You can work with someone who has a chronic illness and have a good experience."
Many who care for loved ones with chronic fatigue syndrome would agree. They pray for a cure, or at least an effective treatment. In the meantime, they say that a life spent caring for someone you love brings its own rewards.
"We have had to set priorities," says John Paprskar. Priorities to John and Joy Paprskar have meant going from doctor to doctor searching for an effective treatment or even a name to put to the mysterious disease that struck down Joy 17 years ago.
Priorities have meant that essential tasks – meals, the laundry – get done first. They have meant no longer going to movies and dances or sharing family vacations.
"I was very, very active," Joy says of life before CFS. "I was a paralegal for many years." At the time she was stricken, she was raising children who were just turning 10 and 12.
"I was active on the PTA board. I was involved politically. I helped take care of my mom and dad. I was active in the Czech club. Then one day I couldn't get up any longer."
Now 60, she is resting on the living-room couch in the couple's home in Hurst, Texas. This is where she spends most of her waking hours.
"It had a devastating effect on me and my family," she says.
"For the first five years, it was pretty much total chaos," says John, 62. "There were a lot of ups and downs." Her blood pressure would drop catastrophically. "We almost lost her three times," he says.
"When something like this happens and you don't know what action to take, you move in any direction you think is going to be of benefit." When she thought household pollutants might be the cause, he built her an environmentally clean room out behind the house.
Now that the disease has been diagnosed, things have settled down to what John calls his "80 percent routine – you can't have everything down." When he gets home from work – he is vice president of a builders supply company – he romps with the dog a few minutes, fixes a cup of tea or coffee, then begins dinner. After cleaning up, he might go shopping or do the laundry. Before bed, he prepares Joy's lunch. The next morning, he'll put it in the oven and set the timer.
Seven years ago when John was looking especially worn, Joy urged him to take a vacation. He went to Europe with their son, who had just turned 21. Two years later, he took their daughter to Europe. Since then, Joy has arranged fishing trips and a day at NASCAR races for her husband.
Mostly these days, their priorities come down to living out the marriage vow each made 38 years ago, to take each other in sickness and in health.
"I hate to say this," John says, "but it's a 'me' society now. People don't even get through the first year of marriage anymore."
A good team
"We make a really good team," says Carol Sieverling, referring to herself and her mother, Lois, a retired Watauga High School teacher. Carol is reclining on the couch. Her mother is sitting in a chair. This is Mom's living room – full of comfortable old furniture, glass-front cabinets full of glassware and vases and books.
Carol has her own living room, a neat, spare space with a futon, a couple chairs, a bookcase and her stereo. When she came home in 1996, desperately ill for the third time, separate living rooms were part of the bargain.
She had just been named assistant pastor of a church in Asheville, N.C. Her mother and her brother drove out, packed her belongings and brought her home to stay.
"I knew I would come home," Carol says. "It was unspoken. I come from an incredibly supportive family. I just asked two things: Can I please bring this stray kitten I found? And can I please turn the spare room into a living room?"
Mother and daughter agree: Separate living rooms have made all the difference. "If you have your own space, it can be a wonderful relationship," Lois says.
"Mom can do a moderate amount of work constantly," Carol says. "She's post-heart attack, she has emphysema, and she runs circles around me. But if there's something heavy to be lifted ..."
"... Or a jar to be opened ..." Lois interjects.
"... I can do it," her daughter says. "I can do the more intensive things. But only for very short times."
Until recently, Carol led a CFS support group. Now, she says, her brain fades after an hour and a half at the computer. At such moments, Mom will look in on her and say – as moms have always and everywhere – "Your eyes look tired. You need to go to bed."
If some cure or miracle treatment came along, would Carol move out of Mom's house and live on her own? "In a heartbeat," she says.
"And that would be fine," Lois nods.
"Unless Mom needed me," Carol adds.
Tim Hauser carries Gaylyn McCarty's medical insurance card in his billfold. A strange keepsake, but a very necessary one. Ms. McCarty, who was diagnosed with CFS in 1998, frequently experiences what she calls "brain fogs," periods in which she has trouble thinking clearly or keeping track of her medical appointments. "I go to all of her doctors appointments with her and have from the start," says Tim.
Their relationship began about three and a half years ago, when the two met via an Internet dating service. Gaylyn's symptoms were in remission – for some with CFS, the disease seems to come and go.
After a divorce, she had tentatively started dating again. Tim found her profile on the Web site for which he had been writing software. She was a singer; he played in a band. She had been a successful advertising executive; he owned his own software business.
"We went on one date and, gosh, just fell in love with each other," says Tim, who had also recently divorced. "We were soul mates."
Because of her illness, Gaylyn had a three-date rule. She didn't want things to get serious. She didn't want to have to explain the whole chronic fatigue thing. But with Tim, it was serious from the start.
She explained the disease, the unpredictability, the uncertain outcome. He said it didn't matter. She said it did, to her. The argument went on for a year and a half. "When I fell in love with him and he fell in love with me and I saw who he was, I wanted more for him," she says. "And I kept telling him, please, go away. Please, I said, you deserve so much more."
He insisted, sick or well, this was what he wanted. "He would turn the argument around and say, 'If this were me and I were sick and forcing you to leave, how would you feel?' We got engaged in February."
Tim says: "One of the things that's important in a relationship is to be needed. Men need to be needed. I know when to raise her feet. I know when to rub her legs and arms. I've had to give her mouth-to-mouth resuscitation three times. She's had total cardiovascular shutdown, where her nervous system and heart check out ..."
But there have also been good times, when they've shared music, conversation, each other's company. The bottom line, she says: "The absence of one another would be a far greater loss than the loss you have taking care of each other.
"Tim and I say the biggest sadness in our life is we didn't meet earlier. But we were different people then. We were both 39 when we met. And we were both mature enough in the beginning to promise that communication would always be an important part of our relationship."
Tim agrees: Communication is key. When the symptoms are at their worst, Gaylyn withdraws from the world into her "cave," her darkened bedroom. Tim has learned at such times not to ask if she's angry.
"Or he'll say, 'Do you have a smile for me today?' " she says. "And I'll smile."
She adds, "One thing you have to learn when you're sick is your caregiver has to be given the space to be frustrated.
"Because it's hard to be sick. But it's also hard to be a caregiver."
About chronic fatigue syndrome
As many as 800,000 Americans suffer the extreme fatigue, sore throats, swollen lymph glands, memory loss and pain associated with the disease known as chronic fatigue syndrome (sometimes also called chronic fatigue and immune dysfunction syndrome, or CFIDS).
Nobody knows what causes the syndrome or why symptoms come and go. There is no cure, and few treatments work consistently. Information is hard to come by, but here are some useful Web sites:
National Centers for Disease Control and Prevention: www.cdc.gov/ncidod/diseases/cfs/
National Institutes of Health's "Health Matters" site: www.niaid.nih.gov/factsheets/cfs.htm
The CFIDS Association of America: cfids.org
American Association for Chronic Fatigue Syndrome: www.aacfs.org
TIPS FOR CAREGIVERS
Those who have cared for people with the disease also offer help and encouragement. Borden Flanagan, who cares for author Laura Hillenbrand, has thought long and deeply about his role. He shares his hard-won wisdom:
"It took me a very long time to accept that being with her meant being with her illness, forever. I did my best to avoid facing this fact, to the detriment of us both, I think. ... You need to face the facts before you can carve out a way to live with them."
"Don't be Florence Nightingale for your wife or husband; take care of them out of love, not piety, for the latter puts you at great distance."
"To love someone is to share their sufferings to some extent. One of the greatest rewards has been to see Laura overcome her illness – through sheer determination to be fully alive. ... The other great reward, of course, is the closeness we share from having navigated such difficult waters together."
"The rough spots require the courage to face the crisis head-on; don't pretend that today's signs of a relapse will be gone tomorrow, or that new symptoms can't mean that a novel complication has developed. Doing justice to one's spouse's illness requires facing harsh reality."
"One also needs a certain amount of self-knowledge; you need to know, and have the guts to admit, when you're being impatient or overly fretful, bossy or timid. There are four cardinal virtues – rather traditional ones – that are important to cultivate: wisdom, courage, moderation and justice. Working on these will make your life better, and will make you a better caregiver."
Source: www.pe.com. © Belo Interactive Inc.
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