•  Caring for Yourself While Caring for Your Aging Parents

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 am, 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 pm, 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.

Porter is one of 29.2 million family caregivers in America, about a quarter of whom are tending to aging parents. According to the Family Caregiver Alliance, 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. And this care may be extensive: The average caregiver devotes three-fourths of her time to a patient with dementia, according to a recent Italian study.

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.

The emotional and physical toll from the stress of caregiving, in fact, is staggering, especially if the caregiver has little or no help. A large study published in 2006 by the New England Journal of Medicine found that in the months or years after a wife or husband was hospitalized, the caregiving spouse's risk of death rose. The more disabled the spouse, the greater the risk facing the caregiver -- with those caring for a partner with dementia or a psychiatric illness running the highest risk. In some cases, having an ill partner increased the risk as much as losing a spouse.

In fact, one of the biggest health care crises in the US today, say doctors and psychologists, is the exhaustion and depression faced by people who care for aging relatives and friends, sometimes for 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.

The NEJM study, which looked at Medicare records for half a million couples over age 65, found that the stress hormone levels of caregivers for a husband or wife with dementia resembled that of severely depressed patients. The blood cells in the immune system -- called lymphocytes -- became less active, and the risk for heart disease and high blood pressure increased. Even their intellectual functioning sometimes declined.

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 can leave a person emotionally exhausted and feeling there is nothing left to give and no life beyond caregiving. Ultimately that despair and exhaustion may lead to placing a loved one in a nursing home sooner than may be necessary, according to the US Department of Health and Human Services.

The New England Journal of Medicine study may help convince policymakers to make some urgently needed changes in the area of elder care. "Certainly caregivers, especially seniors with low incomes, would benefit from a greater availability of home health aides, visiting nurses, and social workers to provide practical support, ongoing education, encouragement, and help in solving practical problems," wrote Michael Miller, MD, in a commentary piece in the May 2006 issue of the Harvard Mental Health Newsletter. "Health aides can provide respite from burdensome physical tasks like bathing, toileting, and dressing… Caregivers must be able to take care of themselves."

For her part, 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. If these options aren't available, consider taking out a home equity line on your parents' home, with their permission, to help pay for a home health aide.

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. Get evaluated by a medical professional if you have symptoms of depression. If you feel trapped in the house, even stretching, doing yoga or deep breathing exercises, lifting weights, or putting on an exercise video in the living room 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."

-- Beth Witrogen McLeod is the author of "Caregiving: The Spiritual Journey of Love, Loss, and Renewal" (John Wiley &Sons, 1999), which was nominated for a Pulitzer Prize. Elaine Herscher contributed to this report.

Further 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
http://www.alz.org

National Association of Private Geriatric Care Managers
520/881-8008
http://www.caremanager.org

Administration on Aging
Provides local resources and links on caregiving
http://www.aoa.gov

Family Caregiver Alliance
Offers resources and an on-line support group to caregivers of brain-impaired adults.
http://www.caregiver.org

National Association of Area Agencies on Aging
National ElderCare Locator
800/677-1116
http://www.n4a.org

National Association for Home Care & Hospice
Gives advice on how to choose a home care provider.
http://www.nahc.org

National Family Caregivers Association
800/896-3650

http://www.nfcacares.org
Offers brochures on everything from self-care to bereavement.

Visiting Nurse Association of America
Provides a database of local agencies.
http://www.vnaa.org

Books

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)

References

Last updated November 3, 2009
Copyright © 2000 Consumer Health Interactive

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