PrintFOR Harriet Sand, the lowest point may have been when she was changing her mother's diapers. Her mom, suffering from Parkinson's disease and other ailments, had moved into Sand's Staten Island home when it was clear she could no longer take care of herself.
But at that moment, Sand needed help as much as her mother.
"I was crying," she says. "I was thinking, 'What did I do to deserve this?"
Sand is not the first one. The convergent trends of an aging population and an increasing emphasis on in-home care have created a surge in caregiver burnout, which occurs when the stress and strain of attending to a loved one becomes psychologically overwhelming.
"It can start small and get worse," says Judy Santamaria, director of the caregiver support program at Visiting Nurse Service of New York (VNSNY). "The physical strain of taking care of a grown person - people underestimate it."
The toll can be staggering. Caregivers are 23 percent more likely to suffer a stroke than the general populace, and they're at greater risk for depression and early death, says Santamaria. Caregivers suffer from high blood pressure, gastroenterological maladies, and sleeping and eating disorders, says psychotherapist Irina Firstein.
Caregiving is "physically, emotionally and mentally exhausting," says Firstein. "You watch somebody deteriorate around the clock. It's like a trauma, really."
In recognition of that reality, some home-care services are working to stem the stress of caregiving. If a nurse senses there might be a problem, VNSNY sends a "clinical caregiver advocate" to see if a caregiver is up to the physical and emotional strains of the task, says Santamaria.
"They ask more psychological questions," she says. "Do you lose sleep? Has this been a financial burden?"
The agency is also launching support groups for caregivers. On Staten Island, Santamaria has formed a group including a woman who's cared for her mother for three years, another who's attended to her paraplegic husband for 17 years, and a man "whose dealt with a family member for two years and is at the end of his rope," she says.
The task of caring for an ill relative is seldom voluntary and rarely convenient, as Anne Rice discovered when her mother's health took a turn for the worse and she was thrust into the role of caregiver-in-chief.
"It came on very suddenly," says Rice, a media consultant from Montclair, NJ. And when it did, "It was one thing after the other. She had glaucoma. She had Parkinson's."
As Rice's responsibilities snowballed, so too did the stress. When she hit the caregiver burnout wall, she felt "defeated." And her duties came on top of attending to her career and her family.
To alleviate stress, Rice hired a team of "care managers" who help with day-to-day duties, such as attending doctor appointments and monitoring her mother's condition.
"I have someone to talk to and confer with," she says.
Harriet Sand's epiphany came when an expert on caregiver fatigue mentioned in a radio interview that caregivers frequently wind up killing themselves, their patients or both.
"I do have to tell you, you do start thinking that way. If this person was dead, I'd be out of hell," says Sand.
She realized that something had to give, so she had a no-nonsense conversation with her mother. Sand told her she had to minimize the "negative energy" she was bringing into the home. That approach - combined with a dose of holistic medicine - has helped heal the burnout, she says, and she now looks at caring for her mother as "an opportunity, not an obstacle."
Also helpful is a telephone support group she's joined. She enjoys the give and take, and it's convenient because - as so often is the case with caregiving - it's not easy for her to leave the house.
"I love it because I'm stuck in my house," she says, "and I'm doing my best to make the best of it."
DON'T GO IT ALONE
Having cared for both his mother and elderly aunt, Michael Friedman knows caregiver burnout. And he has a message for those suffering from it: Get support.
"A lot of people try to tough it out by themselves," says Friedman, founder of the Geriatric Mental Health Alliance.
"None of this is innate. There's no training for this."
Caregivers should look to family and friends for help, he says, but also seek out a therapist or a support group of other caregivers. Not only will it help you cope, but it will also help you be a better caretaker. Friedman cites a study showing that Alzheimer's patients whose caregivers received counseling and support were able to stay out of nursing homes 18 months longer than those whose caregivers received no assistance.
It's also important for caregivers to carve out some down time, which can be as short as dinner with friends or as long as a week's vacation. "People need a respite," he says, "otherwise known as getting a break."
