THE QUEST FOR CARE
This is the second installment in an occasional series focusing on the role reversal occurring in our society as adult children are faced with the challenge of aging parents.
Bill Martin spent 56 years masterminding the old Valley Bell Dairy Co. He retired in 1987. Now, he’s 90. He still meets his cronies for coffee four days a week at the Strand. He feels pretty good. But he broke his hip and uses a walker.
“He’s pretty independent,” said his daughter, Carol Montgomery, “but we like to have someone in the house to cook and do laundry and just in case something happens to him.”
He refuses to move from the place he’s called home for 32 years. “When they were building Edgewood Summit, I hopped right on it,” his daughter said. “But he wants to stay in his own home. It’s a big house and it’s a problem to keep up, but we’d never get him to leave, unless it’s to a nursing home.”
Aging parents often insist on living at home. Ideally, their children pitch in, running errands, preparing meals, helping with baths. But they aren’t always available. Maybe they live too far away. Maybe they have full-time jobs and children of their own to care for. Or maybe Mom and Dad need care that their children aren’t qualified to provide.
Then adult children scramble to find live-in or hourly help.
Families needing home care essentially have three options, said Kathleen Sherman, social work specialist at the Charleston Area Medical Center. The first option, Medicaid, will pay for a few hours of home care each week, but recipients must be virtually poverty-stricken to qualify. “These are people with a regular Medicaid card. For instance, a single person with an income of $1,200 to $1,500 a month might get 20 hours of care a week,” she said.
Medicare pays primarily for short-term nursing and therapeutic services and medical supplies provided through agencies. Recipients must be homebound and under a doctor’s care.
A second option, Medicaid Waiver, applies to people who are “somewhat poor,” she said. In those situations, bottom-line income requirements are waived so applicants can qualify.
And Uncle Sam will want to be reimbursed. Under the Medicaid Recovery Act, the government can place a lien on estates to recoup the cost of the care it provided.
Those who don’t qualify for Medicaid or a Medicaid waiver or don’t want the obligation of government help must choose the third option — paying privately for care. The problem is finding the right person and having the wherewithal to pay them.
Caregivers obtained through agencies generally are bonded and supervised, Sherman said, and the family doesn’t have to deal with Social Security and other obligations. “But they’re very, very expensive, typically $10 to $15 an hour.”
Kelly Home Care, a division of Kelly Services, charges $13.50 an hour for a sitter or companion. The minimum is four hours. The price increases for nursing care. Employees are tested and screened, insured and bonded.
“Or you can hire someone on your own,” Sherman said, “but you have to screen them and take your chances unless they come up with really good references. You hear horror stories about institutions, but I’ve heard more about people getting care in the home.”
Hunting for help
“People keep saying you can find a good old country woman who would like a place to live, but that’s baloney,” said a Charleston woman who sought help for her failing mother. “Finding someone like that would be sheer luck.”
Even with a suitable caregiver, she said, the cost can be astronomical. “These people know what they can get for caring for people. If you pay the absolute minimum of $10 an hour and need somebody around the clock, that’s $240 a day.”
Her mother died recently at 88. When she got sick enough to be hospitalized, the doctor said she needed round-the-clock care. “I told him I didn’t know how we could afford it. He said, ‘No one can afford it. Even rich people can’t afford it. I’m suggesting a nursing home.’”
Before the inevitable nursing home placement, she tried to find help through the classifieds. One woman who responded had no transportation. Another woman made an appointment and didn’t show up. She eventually hired someone referred through a church.
“We didn’t ask her to do any housework, just to come before my mother got up in the morning, prepare her evening meal and leave. But she didn’t last a week. She called one day and said she had a sprained ankle.” She sent a substitute, a much older woman who showed up in short shorts. Eventually, the replacement told them the original woman wasn’t returning. “She said she took another job because they were giving her a car and the use of the house.”
She finally found quality help through a friend. “My friend had two or three caregivers for her mother, and it was more help than she needed. That’s the only way to do it. You hear about somebody from somebody.”
Bill Martin’s daughter knows all about home care headaches. Her mother died in 1998 after a 22-year illness. “So we’ve been trying to keep somebody in the home for 25 years,” Carol Montgomery said, “and it has been a nightmare.”
They tried finding help through agencies, “but they never really worked out.” They learned to depend on word-of-mouth references or classified ads. “I know the classified number by heart,” she said.
Her father uses two workers. One works four days, the other three days. “The person who works four days has been with us a year in January, so that’s pretty good. We found her through the newspaper. We keep a running list of names with references that we started 25 years ago. We always check our list to see if we have anything bad on that person.”
Montgomery lives a block away and she has two sisters who help out. “We’re in and out several times a day to be sure things are going right. He’s come to expect that.”
They’ve encountered only four or five satisfactory helpers in close to 100 tries, she said. Not showing up is a big problem. “The year of the big snows, we had a very nice woman from Orchard Manor. She didn’t show up on one of those big snow days. I got in the Jeep to go get her and she wasn’t home. I just can’t tell you what all we’ve been through.”
Workers have walked off with everything from money in a drawer to coffee filters, she said. She advises families to conduct a household inventory of valuables.
Sherman questions the obsession with staying at home. An aging parent might be better off in an assisted-living facility, she said. “I have a friend who kicked and screamed about going into an assisted-living place, and now she loves it. She’s in better shape. She has friends. She gets her hair done and her nails done. After years of fading away at home, she is blossoming.
“I’m not sure I understand why people want to stay home and be isolated. For $50 a day for a semiprivate room or $75 for a private room, they can have a beautiful place to live where they take you shopping and all that. Compare that to bringing someone into the home.”
The agency route
Kathy Barnett of Home Helpers, one of several agencies advertised in classifieds and the Yellow Pages, said the business she runs with her sister, Sandra, was inspired by problems they had finding help for their own parents.
“Both parents were ill at the same time,” she said. My father died in November 1997 of lung cancer. Five months later, mother died with colon cancer. When they needed 24-hour care, it was difficult to find people.”
Another sister and a brother helped, she said, but they all had full-time jobs and children.
“Sandra had a social work background and I had some business experience. After they died, we weren’t working, so we decided there was a need we could fill.”
About 20 people work for Home Helpers, and they could use dozens more, she said. “We often turn down work because we can’t staff it. There’s a big demand, and hospitals and nursing homes compete for the same workers. It’s a terrible feeling, knowing that there are so many people out there desperate for care.”
Her company doesn’t offer medical care. “It’s very common for someone to have a home health nurse come in and check on diabetes and blood pressure, and hire one of our people to fill in with help on meals, household cleaning, laundry and daily activities.”
Home Helpers charges $13 an hour for one client. Situations vary, she said. “Some we only see 12 hours a week, like noon to 4 p.m. Monday, Wednesday and Friday. Some are self-sufficient except for housekeeping chores and grocery shopping.”
The Yellow Pages list about 20 agencies that provide home help. Some specialize in nursing care. Others, like Home Helpers, primarily provide nonmedical help. She expects the demand to surge. “West Virginia has now surpassed Florida in the percentage of elderly population,” she said. “Those numbers are going to [escalate] in the next 25 years because we Baby Boomers are going to be hitting that ourselves.”
According to statistics from Children of Aging Parents, a nonprofit organization devoted to assisting caregivers, the country’s elderly population will double in less than 25 years, swelling to almost 70 million by 2020. Only 5.5 percent of the over-65 population reside in nursing homes, CAPS studies show, and more than 23 percent of all U. S. households contain a caregiver.
“It’s important for people in their 30s and 40s to start thinking now about what might happen to them at 60 and 65,” said Jim Strawn, director of marketing and community education at Highland Hospital. “Medicare and Medicaid won’t pay for everything.”
Highland operates a home health division, West Virginia Home Health Services, the largest such agency in the state. Along with other services, the program offers skilled nursing assistance at $28 and $38 an hour, certified nursing assistants and home health aides from $13.95 to $15.95 an hour and homemakers for $12.25 an hour. A bath visit costs $30.
The Older Americans Act provides home services through county senior citizens centers, “but there isn’t a lot of funding available,” said Jan Bowen with the Bureau of Senior Services. Services are available to anyone over 60 on a contribution basis. “Users pay suggested fees,” she said. “If you went to a nutrition site for lunch, for instance, a poster there might suggest a donation range. You can pay whatever you feel you can afford, or pay nothing. The service is provided regardless.”
The dwindling funds worry Kathleen Sherman, particularly money for case-management agencies that help arrange home-based personal care. “Instead of having more services, I’m seriously concerned that what services we have are going to evaporate,” the CAMC social worker said. “We just can’t get services for seniors like we used to.”
To contact staff writer Sandy Wells, use e-mail or call 348-5173.
Where to learn more
The Administration on Aging offers a comprehensive overview of the caregiver issue on its Web site (www.aoa.dhhs.gov/aoa/eldractn/caregive.html).
Useful information also is available from CAPS (www.caps4caregivers.org).
The AARP also offers a free book, “Getting By With a Little Help: Community Services to Meet Changing Needs” (D17046), available by e-mail to firstname.lastname@example.org. Include your name and full postal mailing address.
Recommended reading from the AARP:
“The Aging Parent Handbook,” Virginia Schomp, Mass Market Paperbacks; “How to Care for Aging Parents,” Virginia Morris, New York: Workman, 1996; and “How to Care for Your Parents,” Nora Jean Levin, New York: W.W. Norton.