A neuromuscular disorder has diminished Paul Dunham’s robust 160-pound frame to a skeletal 83 pounds over the past two decades.
Since he was diagnosed with the condition, little pieces of independence – things many of us take for granted – have slipped away.
First went the 1973 Dodge Coronet, to a great-grandson, when driving became too dangerous. Then the 83-year-old stopped mowing his lawn, which had been a point of pride. Shaving, washing his hair and dressing himself all were tasks taken over by caregivers because his body was so completely sapped of strength.
But Dunham and his wife, Nancy, still managed to hold on to something deeply important to them – and to millions of other older Americans. The Hayden couple were able to remain in their own home despite myriad health problems.
On Thursday, as his condition worsened, Paul Dunham’s family finally moved him to his daughter’s home, where he can receive constant care.
The Dunhams were able to remain independent for so long in large part because of a national trend in long-term care that’s growing to match people’s stated desires to remain at home as long as possible. An AARP study shows almost 90 percent of Americans age 50 or older claim that as a goal. Helping promote the cause is a growing body of evidence that offering care in people’s homes is more cost-effective than nursing-home care.
“I like just being independent,” Paul Dunham said earlier this fall. He said he and his wife talked once about going to a nursing home and dismissed the idea. “I said, ‘I think we’d be better just sticking it out together.’ And she agreed. The best we’ll do is do the best we can … and just be determined to do what we have to do to survive. That’s what we did and it’s worked out OK.”
Using a Medicaid waiver that pays for caregivers in the home in lieu of nursing-home care, the Dunhams had received 25 hours of weekly assistance. Their caregiver, Jessica Kozak, of Better Personal Care in Coeur d’Alene, was with them every weekday from 9 a.m. to 2 p.m. to help with housecleaning, food preparation and personal care. She also drove them to the grocery store, pharmacy and running errands.
Under the waiver, Nancy Dunham will continue to receive Kozak’s assistance two hours a day so she can remain in the couple’s single-wide mobile home in a park off Government Way.
Nancy Dunham, 79, suffers from neuropathy in her left leg and is blind in one eye. She moves through the trailer gripping at counters and walls to steady herself, using her bright purple cane only when necessary. About three years ago, she suffered congestive heart failure and spent weeks in the hospital, then in assisted living. When she returned, the couple’s children and grandchildren had secured assistance from a caregiver agency and from a meal delivery service, all paid for through Medicaid.
“Everything I did do and was doing was, in a snap of your fingers, taken away from me,” Nancy Dunham said.
For years, Paul Dunham’s dinners were delivered to the home three times weekly by volunteers with Meals on Wheels. Nancy Dunham receives a month’s worth of frozen meals at a time, stored in a chest freezer in a spare bedroom. Daughter Kristi Taylor, who lives nearby, helped out when necessary. But as her father’s health deteriorated, Taylor began spending weekends in their home to bridge the gap in caregiver assistance. The Dunhams have three children, seven grandchildren and 11 great-grandchildren.
More people stay at home
The 25 hours of care Kozak provided weekly cost taxpayers $1,500 per month, compared to the average monthly fee of Medicaid-funded nursing-home care, estimated at more than $5,000 per person in Idaho. In Washington, a nursing home would cost between $6,000 and $7,000 per month, while in-home care costs about $1,200 per month, said Nick Beamer, executive director of Aging and Long Term Care of Eastern Washington in Spokane. “Usually we can take care of two- to two-and-a-half individuals for the cost of a nursing home,” he said.
That cost difference, combined with people’s desires for options, is a big driver behind a national trend to shift more resources toward what officials within the long-term-care field call “home- and community-based services.” That means providing services to the elderly and disabled that help them to stay in their homes for as long as possible.
“As you have more services and providers, and people that are more interested in remaining in their own homes because they know about the options, then people can make more active choices rather than just going to an institution,” said Natalie Peterson, bureau chief for Medicaid and Long-Term Care for the Idaho Department of Health and Welfare. Over the past six years, nursing home use has remained flat, Peterson said, while the number of people using home- and community-based services has almost doubled.
From 2003 to 2009 the number of Idaho adults using the Medicaid waiver to remain in their homes jumped from 4,044 to 7,813. Idaho began offering the waiver in 1999.
“It’s a funding source that permits states to offer community services to individuals that would otherwise require institutionalization,” Peterson said. “The really cool thing is there’s a lot of flexibility in designing or tailoring a care plan to meet the individual’s needs.”
Services include help with chores, housework, case management, home modifications for safety, home-delivered meals, medical transportation and registered nurse assistance, among others, Peterson said.
The trend has led to new federal programs that also ask officials within the long-term-care industry to take the next step. That means not only providing services to people in their homes, but also examining which residents of nursing homes might be eligible to return to their homes or a home-like setting, such as an adult family home.
That is something Washington has been doing for years, said Bea Rector, office chief of the state Unit on Aging in the Department of Social and Health Services.
Using federal money provided through the Deficit Reduction Act, Washington has successfully identified elderly and disabled people living in nursing or assisted-living settings and moved them back into a home- or community-based environment, Rector said. In 1992, the Unit on Aging was serving 17,353 Medicaid recipients in nursing homes. By 2009, that number had declined to 10,646.
In contrast, the number of people receiving Medicaid-funded services in their homes jumped from 19,300 in 1992 to 42,913 in 2009.
Rector said that if the state had not made the shift to home-based care, the cost burden would be much greater. One estimate showed that Washington saved $243 million from 1995 to 2008 by shifting to more home-based services.
However, in a budget crunch, nursing homes and home- and community-based services are competing for the same limited Medicaid dollars, said Rich Miller, CEO of the Washington Health Care Association, which represents the state’s nursing and assisted-living facilities.
“If there is a schism between the two camps, it’s over the money,” Miller said, explaining that Washington does not have the money to pay for all the services people are eligible for. “Somewhere, something is going to be reduced. We’ve already extracted all the efficiencies.”
In 1982, 82 percent of the state’s long-term-care budget was devoted to providing care at nursing homes. By 2009, that had dropped to 33.8 percent, with 66.2 percent devoted to providing services to people in their homes.
Assessing needs regularly
Last week, Roxanne Willison, a registered nurse from Better Personal Care, sat with the Dunhams, Taylor and Kozak to update their care plan because Paul Dunham’s health had deteriorated. Willison has visited the Dunhams four times a year – two for each of them – to update their care plans and make adjustments.
Although Paul Dunham had just a few weeks ago been able to accompany Kozak on short trips to Albertsons or Target, his walking had become increasingly unsteady and he was no longer able to do so. He suffered from constipation and incontinence and his head drooped against his chest because he said it hurt too much to hold it up.
“Every step I take, I don’t know if I’m going to go ba-boom, down on the floor,” he said with typical self-deprecating humor. He couldn’t use a walker because he didn’t have the arm strength to hold up his body. A few days after the meeting, the family rented a wheelchair for him.
At one point, Willison asked if the family had considered assisted living, but Taylor said her parents really don’t want that. She said she’d proposed the idea of her parents living with her in the past, but her father just wanted to stay in his home.
“I don’t think I would ever want to go to a nursing home,” Paul Dunham said. “I would rather die than do that.”“He just likes it right there,” Taylor said last week before the family made the difficult decision to move Paul Dunham to her home. “Attitude is 98 percent of life and his attitude is just top of the line. He tries to make light of the situation. He’s been armless and in a lot of pain … but he goes and does everything he possibly can himself.”
Following the meeting, Willison submitted an application to Medicaid for more caregiver hours and received an additional three hours per week.
That disappointed Taylor, who was hoping for more.
Then on Tuesday, Paul Dunham fell off his bed trying to get up to go to the bathroom. Taylor found a catheter at a medical supply store and a doctor prescribed a riser seat for the toilet, but in the end, the family decided Paul Dunham needed around-the-clock care.
“The need to stay in the home, it’s just something we’ve always wanted to do for them,” Taylor said. “But it is hard, and I think it’s stressful because it’s painful to watch your parents go through that.”