Caring for the Caregiver
By Sheree Crute
Four years ago Susan Jordan was dutifully making the three-mile drive from her suburban Nashville home to her elderly mom´s house. It was a daily routine she cherished. “I´d check on her and help with her meals and her medication,’ Susan says. The two would chat, share a laugh, make plans.
Then one day, a desperate call: “My mom had lost her car,’ Susan, 55, recalls. “She just couldn´t remember where it was; then she got lost trying to go home. A friend found her.’ Susan instinctively knew this was “more than just a memory problem,’ but before she could even make the doctor rounds, her mother, Virginia Vanleer, then 88, fell and broke her hip.
Fiercely independent and determined to take care of the woman who´d given her the “perfect’ childhood, Susan sprang into action. With the blessings of her husband, Ross, she brought her mom to the family house to live. “I was so happy, I cried,’ she says. But in short order, reality hit: her mom began wandering, moving furniture—and each time Susan left the house, her mom would let out a disturbing wail. Meantime, Ross, a cancer patient, was dealing with his own recovery from chemotherapy. And Susan herself was juggling a full-time career evaluating child-care agencies.
“The entire family was in shock,’ she says. “I felt trapped, depressed. I found myself thinking, ‘What have I done?´ ’
Not one to sit on her hands, Susan set about finding help—all the while trying by herself to manage the bulk of her mother´s care. But things went from bad to worse: Susan severely injured her knee after regularly trying to lift her mom, who had taken another fall. “I was so tired,’ she said.
Finally, after nearly a year of searching, Susan discovered a support group organized by the local Alzheimer´s Association, and for the first time, she says, “I knew I wasn´t so alone.’
The leader of the group gave her a book on caregiving “that became my bible,’ she says, and members guided her to resources that led to the in-home care her mother needed.
It was, Susan says, the gift that saved her life. Not only did her new friends help stave off depression and a host of stress-related health problems; they showed her how to put some breathing room in her life and live again.
Among the 45 million caregivers of family and friends in this country, most don´t get thrown that kind of life raft—and the toll, experts say, is enormous. A cascade of studies in recent years has shown that caregivers stand at particular risk for a host of mental and physical illnesses, many of which have roots in stress, exhaustion, and self-neglect—symptoms some medical professionals have begun calling caregiver syndrome. Caregivers appear more likely than noncaregivers to get infectious diseases, plus they are slower to heal from wounds, says Janice Kiecolt-Glaser, Ph.D., director of the Division of Health Psychology at Ohio State University in Columbus. Kiecolt-Glaser has conducted several caregiver research studies with her husband, immunologist Ronald Glaser, Ph.D.
Caregivers also have greatly elevated blood levels of a chemical that is linked to chronic inflammation. And that puts them at increased risk for heart disease, arthritis, diabetes, cancer, and other diseases. Notably, says Kiecolt-Glaser, those levels are still high three years after caregiving duties end, especially among caregivers over 65. What´s more, the studies found a greatly increased risk for anxiety and depression.
The implications are far-reaching, given the millions of Americans who report devoting 12 to 40 hours each week or more to the most basic needs of loved ones. “Eighty percent of the long-term care in the country is done by friends and family; we are the care system,’ says Suzanne Mintz, president and cofounder of the National Family Caregivers Association.
According to a 2004 national survey by AARP and the The National Alliance for Caregiving, nearly 23 million households are currently home to a caregiver, most often a woman who is taking care of someone 50 or older. Some 43 percent of these caregivers are over 50 themselves—13 percent are over 65—and they spend good chunks of their weeks on a heady range of chores, from medication management and bathing to feeding, clothing, and arranging health care services.
They cross all ethnic, economic, and religious lines, too, with African Americans and Hispanics more likely to report having to struggle to get patient needs met. Medicaid, Medicare, and the majority of private medical-insurance plans offer little or nothing in the way of payments for home-care assistance—the most commonly needed care in later life. So, many caregiver families find themselves reaching into their own pockets, often straining the family coffers and boosting stress levels even more. Many also pass up job transfers and promotions, abandon hobbies, forgo vacations, and—most dangerous of all—give up the very relationships Kiecolt-Glaser says are “perhaps the single most important factor’ in keeping health problems at bay. Exhausted, anxious, and pressed for time, caregivers, she says, “tend to lose their networks and separate from their friends.’
For those peering in from the outside, the solution for the caregiver might seem obvious: speak up. Get help. In fact, experts say, that´s often the hardest step to take. “You know what they say: anything that doesn´t kill you will make you stronger,’ says Barbara Phenneger, 56, a full-time hospital accounts-payable clerk who for eight years looked after Bill Warren, her 87-year-old neighbor in West Chester, Pennsylvania. Though she never complained, Barbara became so exhausted that she finally sought out a home aide to give her a little relief. “I started imagining Bill; my husband, Bud; and the dog—all looking down on me laid out on the floor and saying, ‘Boy, she really did take good care of us!´ ’
For many caregivers, though, the thought of reaching out for help never occurs.
“I really believed I could do it on my own,’ recalls Ann Barry, 70, a Brunswick, Maine, mother who has been a 20-year caregiver to her husband, Bill, 82. As his illnesses—heart disease, hydrocephalus (fluid on the brain), and dementia—advanced and he eventually needed a wheelchair, “I just kept trying to adjust my life,’ says Ann, her girlhood southern accent still in evidence. But it didn´t work. “I lost my sense of myself. After a while I had to start taking antidepressants.’ Finally, a friend who develops community resources for the elderly recognized her pain. “She said to me, ‘You can´t do this alone,´ and led me to many resources,’ says Ann, who joined a church caregiver group and ultimately became a caregiver supporter herself.
Unfortunately for many friends and family members of caregivers, it is difficult to know when to step in—or what to do, Mintz says. Some caregivers actually rebuff offers of help because they see acceptance as a sign of weakness or a “shirking of their duty,’ says Barry J. Jacobs, Psy.D., a clinical psychologist in Springfield, Pennsylvania, and author of The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent (Guilford, 2006).
For others, something even more profound may be at play: an attempt to quash emotions simmering just beneath the surface.
Many caregivers “experience profound sadness and rage,’ says Jed Levine, director of programs and services for the New York City chapter of the Alzheimer´s Association. While their caregiving may be driven by empathy and love, they´re also dealing with guilt over the anger and frustration they feel. The very touchstones that define their lives—careers, love relationships, friendships, even their dreams—are often being sacrificed. Letting others in, says Levine, invites the risk that those nearly overwhelming emotions will be on display.
“Caregivers of spouses with dementia or Alzheimer´s lose the element of reciprocity that is the basis of a marital relationship,’ Beeson says. “When this is gone, the sense of loss is tremendous.’
Mintz, who has been taking care of a husband with multiple sclerosis since the 1970s, says she knows from experience about that desire to protect pride and emotions. Her “breakthrough moment’ didn´t come, she says, until the day her husband, Steven, lost his balance and fell in the family bathroom. “All I could do was drag him, slowly, across the floor to our bedroom. I´m five feet one; he´s five feet eight. It took 45 minutes—it was awful. That´s when I knew it was not a one-person job.’ And her husband agreed.
But Mintz is the first to admit it´s not easy getting people to let others into their lives. This is especially true of people in their 70s and 80s, who may be taking care of spouses or other close relatives. “They weren´t raised to talk about their problems,’ Mintz says.
Research suggests it´s difficult for African Americans and Hispanics to open up, too, says geriatric psychiatrist Rita Hargrave, M.D., a clinician and researcher at the University of California at Davis. These groups “are less likely to admit being stressed, burdened, or depressed by caring for loved ones, when asked,’ she says. “But if you evaluate their physical symptoms of depression and stress, you´ll find high levels of both conditions.’
Mintz says such cultural and age barriers are all worth considering when attempting to give family caregivers a hand. But no matter who´s needing the help, she advises a gentle start. She suggests first encouraging the caregiver to find a “caregiving buddy’—a person who´s facing similar caregiving challenges and could be a trustworthy confidante. Often, she says, the road to asking for broader support is shorter after that initial step.
If the caregiver resists, friends and family members should be patient, Jacobs says, because getting pushy or controlling will just make things worse. Praise the work the caregiver is already doing. If necessary, ask an empathetic health care provider to recommend your help. And, if possible, enlist the person receiving care. “Permission to get help will have more force coming from the patient than anyone else,’ says Jacobs.
Once the caregiver begins to share some of the stresses, don´t feel you have to move mountains, but do pitch in. “It almost doesn´t matter what you do for a caregiver, as long as you do something,’ Jacobs says. Levine says simple gestures—offering to stay with the patient while the caregiver catches a Saturday matinee or runs errands, taking the caregiver and the patient to lunch, bringing over a casserole—can have a tremendous impact. If you´re great with paperwork, helping out with the piles of insurance forms can be a thoughtful and much appreciated gift.
Denise Gilardone says she can attest to that. Until last June, when George Engdahl, her fiancé of 18 months, died of brain cancer at 58, the 50-year-old marketing manager had been his primary caregiver for a year. “People would say, ‘Let me know if I can do anything,´ and as goodhearted as that gesture was,’ she says, “it was not helpful.’ Often what she needed was specific offers, particularly offers of time. “It sometimes became stressful in and of itself to make a lot of calls for relief when I needed to go somewhere,’ she says. “Then people would feel bad or guilty if they couldn´t come.’
Nudged by a hospice-care worker, Denise, who lives in Hingham, Massachusetts, eventually hired an aide to come two to three hours every Thursday—and that spared her the discomfort of having to explain to others that she wanted to “go to the health club, as opposed to the grocery store, which somehow seemed more acceptable.’ George´s “very supportive’ son, Eric, started coming Tuesday nights, and good friends came when she called. But it wasn´t until the very end, she says, that it occurred to her to put eager helpers on a schedule.
Careful listening, Levine says, can often tip off family and friends to those kinds of practical needs, or signal when a caregiver may be “truly lost in an emotionally wrenching situation’ and should be guided to professional help. Keeping a close watch can also clue friends to health problems caregivers may be developing, or existing problems that are getting worse.
That´s what happened for Susan Jordan, when her daughter, Stacy, began noticing Susan´s energy just wasn´t what it used to be, even after she´d gotten in-home help. Susan concedes that after she injured her knee, “I stopped my daily walking routine for three years.’ But it was Stacy, a former high-school athlete, who saw what her mother could not. “She said, ‘Come on, Mom, you can do this! You´re walking and going to the gym with me,´ ’ Susan says. “Now, I´m going to the water-aerobics class at the local Y, too! People say I look a lot better—and I feel a lot better.’
Giving attention to health can save a life, experts say, so think broadly—even beyond walks or yoga classes. Take the caregiver in your life along when you have your next cholesterol or blood pressure check. Or help schedule mammogram or colonoscopy tests for the caregiver and then arrange for transportation. This can be of particular help to people in their 70s and 80s, who “are at especially high risk for health problems if they are handling caregiving alone,’ says Richard Schulz, Ph.D., director of the University Center for Social and Urban Research at the University of Pittsburgh and lead scientist on the nation´s largest study of Alzheimer´s caregivers, Resources for Enhancing Alzheimer´s Caregiver Health (REACH I and II).
Because many of these 70-plus caregivers are caring for spouses, though, Schulz advises being especially sensitive to relationship issues. The couple may need counseling for long-simmering marital stresses, or they may be embroiled in battles with adult children, he says. They may also be dealing with a basic, and profoundly sad, inability to communicate the way they once did—what caregiving experts refer to as relational deprivation, explains Rose A. Beeson, D.N.Sc., R.N., a researcher and the director of the Center for Gerontological Health Nursing and Advocacy at the University of Akron in Ohio.
Beeson says she´s found in her research that wife caregivers often are hardest hit by the phenomenon, as they tend to give up social activities or other vital parts of their lives more readily. “Women in this position need to keep going out with friends,’ Beeson advises. So encourage that. Take them places—“play cards; go to church.’ Men, she says, tend to be relatively less depressed or isolated, in part because “people are much more likely to rush to help.’ Also, men tend to be more circumspect and see taking care of their elderly wives “as an opportunity to give back to the woman who reared their children and took care of them and their home,’ Beeson says.
Still, because all caregivers struggle in some way, experts say that reaching out to help them ease stress, while finding a bit of spiritual peace, might be one of the most positive moves of all. In the groundbreaking Alzheimer´s-caregivers study, deep breathing and other relaxation methods emerged as among the most effective tools for doing this, and these techniques have been highly encouraged since, says Schulz.
That´s not surprising, notes Herbert Benson, M.D., director emeritus of the Benson-Henry Institute for Mind Body Medicine at Massachusetts General Hospital and author of The Relaxation Response (Harper Paperbacks, 1975, 2000), which introduced millions to the concept of mind-body healing and a simple form of meditation. A friend to a caregiver, Benson says, does not have to be a spiritual master to learn a few techniques and then teach. And the payoff can be big.
“You can give a caregiver the ability to be less frightened and to relieve themselves of stress-related problems, such as headaches, irritability, and illness,’ he says. “The key is to open yourself to the caregiver´s belief system and work within that.’ The relaxation process itself is easy and can be done anywhere and anytime, says Benson. (See “Getting Help,&rdquo above.) “All that´s required is the choice of a favorite phrase—a prayer or a word will do—and the willingness to clear your mind.’
However you choose to help the caregiver in your life, experts say you should connect in the ways you think will be most meaningful and life-enhancing. And recognize that for all the caregiver´s stress—and the rebuffs of help—that person´s priority is to be of service to loved ones. As Susan Jordan puts it, “I look in the mirror and I can see that I am really tired some days.’ But, she adds, “I had a wonderful childhood, thanks to my mom. I´m happy to do this for her. I feel that I´m the one receiving the blessings.’
Sheree Crute is a freelance writer based in New York City.