SUNDAY, April 18, 2004 (HealthDayNews) -- It's one of life's hardest decisions: How do you care for aging loved ones when they're no longer able to care for themselves?
The obvious choice is to put mom or dad in a nursing home. But few children -- or their parents -- want to do that. Eighty percent of older Americans surveyed said they'd prefer to live out their lives at home, said Kari Benson, a policy analyst with the U.S. Administration on Aging.
Home care, both short-term and long-term, is becoming a more popular option. But not everyone can afford -- or even manage -- it. There are a host of hidden concerns and details that need to be anticipated and worked out.
"It's better, but it's not easy," said Carol Levine, director of the Families and Health Care Project at the United Hospital Fund. The New York City-based advocacy group "promotes high-quality, patient-centered health-care services that are accessible to all," according to its Web site.
Levine's story is typical of many baby boomers who are confronted with the challenge of caring for failing parents or relatives.
She arranged for home care for her mother when she was dying two years ago. Now, she has home care for her husband, who suffered a traumatic brain injury.
Home care comes in two basic varieties, Levine explained. One is short-term care after a hospitalization for a stroke or fall or similar health problem. The other -- long-term -- is for an aging person who needs help with life's daily demands.
Short-term home care is more common, and more likely to be covered by insurance. Medicare, for instance, will pay for skilled nurses and part-time "intermittent care," which, according to Levine, is generally up to 28 hours per week. The home-care aide can help with personal care, prepare meals and make sure medications are taken without actually administering them.
"Medicare has its own very strict guidelines as to who's eligible and who's not," said Regina Hawkey, director of congregate care for the Visiting Nurse Service of New York.
Private insurance generally works the same way but typically offers less coverage, she added.
Even if you manage to get 28 hours a week in coverage and an agency to do it, that often isn't enough time for a person who's incapacitated. Very often, the families -- if they exist -- need to pitch in with care.
"It [short-term care] is really intended just to help get over the acute phase. But most people don't understand that or don't want to hear it or don't want to believe it's actually going to happen," Levine said.
Another problem: Someone who has suffered say, a fall or pneumonia, often ends up more needy than ever once the acute problem has been handled. But Medicare or most private insurers won't cover long-term care, Levine said.
Long-term care insurance is an option, but most people don't have such coverage, said Lisa Yagoda, a senior policy associate for aging at the National Association of Social Workers in Washington, D.C. "A lot of people wait for the crisis and, when you're in crisis mode, that's when you have the least options."
Even the best home care may not be what you think it is going to be. "It is not without difficulties because many people don't want what they call 'strangers in the house,' and a lot of people are coming in and taking over for very short periods of time and you lose a sense of your privacy and the intimacy of your home," Levine said.
If you can't pay for home care, you have to do it yourself. If you can't do it yourself, you need to find a way to pay for it. Levine had home hospice care for her mother for a year, but even that required additional help. She and her sister could not be home all the time so they organized a group of local women from the community who tended to her mother day and night. Some of the women had nursing experience and all were paid.
"The day-to-day taking care of my mother, making sure she didn't fall, making sure she had a bath, making sure she had meals -- that was a job that either the family had to pay for or provide and since we couldn't provide it, we paid for it," Levine said.
"For me, for my mother and for my husband, it's definitely worth it. And it was worth it for my mother who absolutely wanted to be home and had a much better quality of life than she would have had anywhere else," Levine added.
AARP says there are several issues to discuss when considering a home-care provider. Some examples:
- Ask about licenses, experience and training in gerontology and human services. Also, ask for references, and then call them.
- Discuss care philosophy. For instance, is the caregiver's first interest always the elderly person? Under what circumstances would he or she resign from the case?
- Ask the caregiver to spell out the range of his or her services.
- Discuss fees. Get a clear picture of the rate to be charged and under what circumstances.
More information
The United Hospital Fund has a Caregiver's Guide to Hospital Discharge Planning. The Family Caregiver Alliance has a variety of information, while the U.S. Administration on Aging has an eldercare locator.
