When Corinne Porter’s father had a massive stroke in 1998 and was placed in a nursing home 65 miles away, officials at the home said he would never wake up. Earl Murphy did wake up — once his daughter, dissatisfied with his care, brought him to her home in Mossy Head, Florida.
She had some idea what she was getting into: Since his stroke, her 84-year-old father hasn’t been able to walk or speak; he’s fed by tube, and he requires round-the-clock care. Porter, 53, has managed to keep working at home, maintaining rental properties and putting on country music shows. But she gets up at 7 every day to begin the regimen of bathing, shaving, brushing her father’s teeth and changing him. Nursing assistants arrive at 8 a.m., spending eight hours a day, five days a week helping him with basic needs and physical therapy. Porter last tends to her father at 10 p.m., when she changes him again and then goes to bed, a baby monitor in her room to listen in on him.
But her duties don’t end there. Four months before her father’s stroke, her mother, Shirley Murphy, 86, was diagnosed with dementia. After her husband became ill, she, too, had to move in with her daughter and son-in-law.
“It was bad,” Porter says. “Mother was so paranoid, she called the sheriff three times on me after Dad’s stroke. She thought I was stealing her car keys. It’s just that she couldn’t remember where she put them.”
Porter never stops working. Just to get time to run the family errands, she has to have her eldest daughter cover for her at home. Porter even includes her mother in her one regular respite, a weekly lunch with friends. “Some nights you wish you could just go to bed at 8 o’clock,” she says.
Caring for aging parents
Porter is one of 22.4 million family caregivers in America, about half of whom are tending to aging parents. According to the U.S. Department of Labor, the typical caregiver is a 46-year-old working woman spending an additional 18 hours a week caring for her 77-year-old mother, who lives nearby. This trend is projected to continue as the number of people over 65 doubles in 30 years, with the fastest-growing group being those over 85.
It happens so unexpectedly: a parent has a medical crisis, and the adult child — usually a daughter — becomes a caregiver. People are living longer than ever, often with multiple chronic conditions like heart disease, arthritis, Alzheimer’s disease and emphysema. Most of these conditions usually don’t require hospitalization, but rather care at home.
According to a 1997 survey by AARP (formerly the American Association of Retired Persons) and the National Alliance of Caregiving (NAC), a quarter of caregivers experience emotional stress or feeling out of control. The more hours devoted to caregiving, the higher the stress levels. Another study has found that caregivers suffer depression at six times the national average. What’s more, 80 percent of caregivers for someone with dementia suffer even higher levels of stress, and nearly half suffer from depression, according to the Alzheimer’s Association.
And even though many caregivers are reluctant to ask for help, this attitude can be dangerous. A 1999 study by the University of Pittsburgh found that unchecked, the stresses of caregiving — especially among elderly spouses — can even lead to death.
Who cares for the caregivers?
Because many older people are living with a chronic illness for 10 to 20 years, family involvement has become long-term. Not only are family members asked to handle complex medical decisions and insurance, but they also must handle financial, housing and legal concerns — all the while coping with family dynamics that may complicate decision-making. In fact, one of the biggest health care crises in the U.S. today, say doctors and psychologists, is the exhaustion and depression faced by people who care for aging relatives and friends, sometimes over decades. Doctors say that chronic stress breaks down the body’s defenses, compromises the immune system and leads to diseases such as allergies, high blood pressure, ulcers, backaches, migraines and even heart attacks.
Caregivers often feel guilty if they turn over their duties to others. But they are likely to burn out if they don’t take steps to relieve the emotional pressure. This manifestation of stress can leave a person emotionally exhausted and feeling there is nothing left to give and no life beyond caregiving. Ultimately that despair and exhaustion can lead to placing a loved one in a nursing home sooner than may be necessary, according to the U.S. Department of Health and Human Services.
Porter feels lucky to have her eldest daughter’s consistent help. Her 31-year-old daughter and grandson live in another house on their large property, and often she takes over the most burdensome chores of caring for her grandfather.
“Fortunately, I have a daughter who’s willing and able,” Porter says. “I could never have brought him home if it hadn’t been for her support.”
Neither would she have been able to hire help at $1,600 a month had it not been for her parents retirement savings, which she and her siblings agreed should be used for their parents? care. Porter is tired much of the time, and she admits she has little time to exercise or even to participate in a support group. But she does stay in touch with other caregivers online and she thinks she’s doing the best she can to stay healthy.
How do you know if you’re at risk for stress-related problems? Here are warning signs:
- Denial about the disease;
- Anger at the person with the disease, and at the situation;
- Isolation and withdrawal from friends and social activities;
- Reduced effectiveness at work or at home;
- Depression and anxiety;
- Unrelenting exhaustion;
- Sleep difficulties;
- Constant irritability or dulled emotions;
- Inability to concentrate and frequent memory lapses;
- Health problems such as physical aches and pains, and an increase in smoking, drinking alcohol or taking sleep medications.
Experts warn that if you’re experiencing even a few of these symptoms regularly, you need to make some immediate changes. Support groups can be a lifeline for caregivers. Not only can you vent with other people in the same situation but also you may come away with practical solutions that have worked for others.
You might also consider adult day-care as a way to give yourself a break and help your parent stay active. Don’t hesitate to ask siblings, friends, and other family members to take over for a while so that you can take a walk, go to the gym, or do something else that will help you reduce stress.
When you’re caught up in caring for an aging parent, the temptation to be a martyr can be great. Don’t succumb. Don’t give up everything in your life. Keep yourself physically and mentally sharp with proper nutrition and exercise. Even taking deep breaths or getting mild exercise will help. It’s important to take short breaks often and schedule longer breaks when you can. Recently, for the first time in two years, Porter left her family and visiting nurses in charge and went away for five days. It wasn’t nirvana, she says, but it was a helpful respite. Another way to get a break: pick one chore that causes you stress and ask someone else — a friend, a relative, or a professional — to take it over. Experts also advise caregivers to be flexible and adapt to other ways of doing things if something’s not working.
And last, but totally not least, keep a sense of humor.
“Caregiving is an opportunity. Something extraordinary happens,” says Cynthia Burke, director of outreach for Friends in Deed in New York. “That doesn’t mean it is not difficult, challenging, frightening, or sad. Doing what is doable — and not getting overwhelmed by what is not — is what’s important.”
Porter knows her father has improved under her home care and that her mother would not be doing as well in a nursing home. So she resists the temptation to ponder why both her parents need so much of her attention at once.
“The kids are grown. I could be doing some traveling. But you do what you have to do,” she says. “I’m aware that I’m giving up a lot of my life. I’m confined, but I don’t resent it. It’s an act of love.”
Resources
- Alzheimer’s Association. Its information and referral service can put adult children in touch with support groups and resources in their area. 800/272-3900. www.alz.org
- National Association of Private Geriatric Care Managers. 520/881-8008, www.caremanager.org
- Children of Aging Parents. Offers information, referrals, and support for caregivers.
- www.careguide.net/careguide.cgi/caps/capshome.html, or 800/227-7294
- Administration on Aging. Provides local resources and links on caregiving. www.aoa.gov
- American Association of Retired Persons. Discusses various types of help available to caregivers. www.aarp.org/caregive
- Family Caregiver Alliance. Offers resources and an on-line support group to caregivers of brain-impaired adults. www.caregiver.org
- National Association of Area Agencies on Aging National ElderCare Locator, 800/677.1116 www.n4a.org
- National Association for Home Care. Gives advice on how to choose a home care provider. www.nahc.org
- National Family Caregivers Association, www.Infcacares.org, or 800/896-3650. Offers brochures on everything from self-care to bereavement.
- Visiting Nurse Association of America. Provides a database of local agencies. www.vnaa.org
For further reading
- Claire Berman. Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive (Henry Holt, 1996). Virginia Morris. How to Care for Your Aging Parents: A Complete Guide. (Workman Publishing, 1996).
- Kerri S. Smith, Caring for Your Aging Parents: A Sourcebook of Timesaving Techniques and Tips (American Source Books, 1992)
All rights reserved. This article first appeared at Consumer Health Interactive.
Beth Witrogen McLeod
