I Couldn't Care More
by Lauren Long
All her life, people have admired Carol Ann Young for her extraordinary patience. But no amount of stoicism could have prepared Young for the strain of caring for both her mother and her aunt as they struggled with Alzheimer's.
"It wasn't until after my mother died that I had serious thoughts about whether I had completely damaged myself and my mental health," admits Young.
Today, more than 25 million Americans provide ongoing care to seriously ill or disabled family members. These caregivers are caught in a struggle between cultural traditions and a new world created by modern medicine and advancements in home-care technology.
Thanks to these advancements, average life expectancy increased by 30 years during the 20th century. But our longevity is progress with a price. In the new age of care giving, unpaid, untrained and usually female relatives are called upon to provide care that previously would have been available only in institutions.
"It really annoys me when people say families have always done care giving. Families have never done this with such complicated medical treatments and the kind of economic pressures this brings today," says Carol Levine, director of the United Hospital Fund's Families and Health Care project in New York City. "In the old days, people got better or they died."
Levine has been a caregiver for her husband since 1990, when an automobile accident left him a paraplegic at the age of 62. As her husband, Howard Levine, recovered in the hospital, Carol Levine received sympathy and support. Eventually though, she says her identity evolved from anguished wife to caregiver, from partner to nurse.
"The health care workers stopped seeing me as someone to be concerned about," recalls Levine. "I became the person who was supposed to do all the things that my husband needed. There was a sense that I was supposed to do it all cheerfully and not raise any objections."
It's natural for family caregivers to experience conflicting emotions in their roles. Ambivalence is particularly common. While many caregivers derive satisfaction from helping someone they love, at the same time, society demands that caregivers cover up other feelings that are not socially acceptable, such as guilt or anger.
"No one can tell you exactly what your feelings are and your sense of obligation to someone else is," says Levine.
As baby boomers assume care giving for aging parents and other family members, it is important to set limits without guilt. It is essential to define what you can do and comfortably tolerate, and when you need to say, "I can't do this anymore" or "I need help."
"You could love someone and still not be able to do this," says Levine who edited Always on Call: When Illness Turns Families Into Caregivers, a collection of caregivers' stories, for which Levine and Young each contributed a chapter. "We have to recognize that human beings are only able to do so much. It doesn't serve anybody, particularly the person who needs care, to have someone who is desperately unable to cope."
In Levine's case, physical strength was a problem: She couldn't lift her husband — a daily requirement of his care. Levine hired a male home-care aide to work the day shift while she does the nighttime care giving. To keep him engaged, she hires out-of-work actors to read to her husband, a former university public-relations manager.
Levine also knew that she would not quit her job. "I needed a job for the money and my sanity," she says. Quitting was impossible anyway; she pays for her husband's care from the couple's savings and her salary. Neither Medicare nor private insurance cover any of the expenses.
The emotional and financial strain, at times, can be unbearable. It also can be isolating, which is why when a doctor recommended a New York City support group for children of Alzheimer's patients to Young, she didn't think she needed it.
"Finally after several years, it got to be too much, and I thought, 'Let me check these people out.' I found people in the support group who were able to give me suggestions on how to handle different things, and they would work," recalls Young. "People were telling me that I had to take care of myself and treat myself well. This was the first time I had heard that."
Young came to terms with her limitations, and why she was caring for her mother and aunt. "What I did was to ask myself how I would feel about me if I didn't do it? I had spent my life thinking I was a person who was very keen on family and my heritage, and I decided that if I didn't take care of my mother and my aunt, then who was I?" says Young.
The often conflicting feelings a caregiver has are not only normal, they're human. "You can't be human and not feel mixed emotions about these awful situations," says Levine. "That doesn't mean you don't love the person or won't continue to do what you are doing. But you are not a saint."
Help From Afar
Parenting Your Parents
Who's Taking Care of Grandma?
An Aging Checklist
The Affordable Retirement
Email this article