Caregivers: The Invisible Patient
Caring for the Caregiver
By Peggy Peck
July 16, 2001 -- It's a sunny June afternoon and Molena Cannon says she can now spare a few minutes for a telephone interview because "the plumber just left. He was removing a set of dentures from the toilet. Just a typical day here."
For 28-year-old Cannon, a typical day means caring for her grandparents, both in their 80s, as well as her 3-year-old daughter.
One in four Americans -- about 54 million people -- function, like Cannon, as a family caregiver, according to a recent survey by the National Family Caregivers Association. Most of these people didn't choose the role, says NFCA founder Suzanne Mintz, but rather had it foisted on them by circumstances -- a sick and failing spouse or parent or a handicapped child.
Using that model, Molena Cannon is the exception: She chose to give up her home and her full-time job at a community hospital to become a full-time caregiver. It was a choice that saw the Cannon family moving to the family farm in rural Georgia where her grandparents lived, and where her father had been raised.
Cannon's husband is a police officer, but in his off-time he works the 300-acre farm to supplement the $800 a month Cannon's grandparents get from Social Security. To help make up for the lost wages from Cannon's job as a monitor technician, she and her husband also grow and sell vegetables. "We sell them from our back porch and gross about $1,000," says Cannon.
Caregiving Can Offer Special Rewards
Loss of income is a common dilemma facing family caregivers, but the rewards can often outweigh the sacrifices, says Cannon, whose grandfather has been debilitated by stroke and whose grandmother has suffered both a heart attack and the onset of dementia. In her hospital work, Cannon says, she often saw elderly patients with "no family or friends visiting" and decided her grandparents wouldn't suffer that fate.
When she and her husband announced their decision to move to her grandparents' farm, it didn't meet with universal applause from the rest of the family.
"My mother was very opposed to it because she thought it would be bad for my daughter," says Cannon.
Cannon's father had died some years previously, but her uncle, the only surviving child of her grandparents, was also initially opposed to the idea. "But he is coming around now because he sees how unsafe it is for them to be here by themselves," she says.
Different Stories, Same Emotions
A desire to help other caregivers is what led Suzanne Mintz to organize the National Family Caregivers Association. Mintz learned firsthand about being a caregiver when her husband was diagnosed with multiple sclerosis in 1974.
"That's when our lives changed," says Mintz. At the time, she was 28 and her husband, Steven, was 31.They were married in 1967 and were parents of a son born in 1969. "That's not the time of life when you expect to hear that your spouse has an incurable neurological disease," she says.
Mintz' husband has a slowly progressing type of MS, so he didn't need immediate caregiving, but "there was an immediate period of grieving that followed the diagnosis," says Mintz. "We were thrown for an emotional loop."
In ensuing years, Mintz and her husband separated twice before finally getting "back together in what is now an extremely solid marriage," Mintz says. Ultimately, her husband's illness has actually helped cement that closeness, Mintz feels.
As her husband's MS worsened, Mintz found herself called on more and more to take on caregiving responsibilities. By the early 1990s she had been through a "couple of bouts of clinical depression" that she thinks were triggered by worries about her husband's health and concerns about her own ability to cope. At the same time, a friend was struggling to serve as caregiver for an ailing parent.
"Although our circumstances were different, our emotions were the same," says Mintz. That realization led the two friends to discuss the need for an organization to help others in the same boat. In 1993 Mintz founded the National Family Caregivers Association to provide a nationwide support network for caregivers.
Making the Connection
Soon after Lauren Agaratus of Mercerville, N.J., gave birth to her daughter, Stephanie, she learned the girl has a severe kidney disease. Agaratus and her husband were told their daughter was not expected to survive.
"She just turned 9 last week, and we still don't know what the future holds," Agaratus tells WebMD. But the past was marked by round-the-clock, intense caregiving responsibilities for Agaratus.
"For the first 5 years she was medically fragile and I did nothing but care for Stephanie," says Agaratus. "I was very isolated socially."
Taking care of Stephanie meant that Agaratus was frequently on unpaid leave from her job, but "we didn't qualify for anything, any programs," she says. Physically, the stress caused Agaratus to lose hair, hair that she says still hasn't come back. Economically, she and her husband found themselves mired in debt, almost to the point of losing their home.
'I Am a Caregiver'
Eventually she heard about Mintz' group and attended a meeting in Connecticut. "I heard Suzanne talking about how you have this extra role, you are not just a wife. Other people aren't getting 9-year-olds out of bed and changing bed sheets because they are wet, or diapering a 5-year-old. I thought, 'Oh, my God, that is what I am. I am a caregiver.'
"Then she said that what is important is to take care of yourself because you are not going to do anyone any good if you get run down. It just clicked with me, and I started spreading the word about being a caregiver and about how caregivers need to take care of themselves," says Agaratus.
That type of support is vital to the well-being of caregivers, says Joanne Schwartzberg, MD, a gernontologist who is the American Medical Association's point person on caregiver health.
"The social isolation faced by caregivers is undeniable," says Schwartzberg, and it often extends so far that the caregiver become "invisible even to physicians and others who are providing medical care for the patient." Taken together, that isolation and invisibility often put the caregivers' own health in jeopardy, leading to increased risk of illness and death.
The AMA now considers caregiver health to be a major public health concern and has launched a campaign to alert physicians to the problem, she says. As part of routine office visits, the AMA wants physicians to ask every adult patient: "Do you have responsibility for caregiving?" If the answer is yes, the patient would then be asked to complete a special questionnaire that is designed to assess health problems, such as back pain, anxiety, depression, and sleeplessness.
Beyond urging caregivers to take care of themselves, Agaratus says she also wants to spread the word that "this is really very fulfilling, and it does get better."
For example, she says, her daughter Stephanie "taught herself the piano when she was 4," and has since grown to become a gifted musician who has won awards for several songs, stories, and poems she has written. Beyond that, says her mom, "she is really cute. Really."
And lucky. Really.