Many questions, few answers for families in elder care crisis
11/13/2013 12:00 AM
11/13/2013 8:52 AM
At age 81, Gloria Cotton lived on her own in Arizona, far from her family in Sacramento. In May 2011, she had a devastating stroke that left her partially paralyzed and suffering from deepening dementia – and her daughter, Victoria Bollinger, was plunged into a crash course on the unfamiliar world of elder care.
Over the past two years, as Bollinger has placed her mom in four Sacramento board-and-care homes and two skilled nursing centers, she learned what many thousands of California families already know: When it comes to finding care for fragile elders in declining health, good answers can be maddeningly scarce.
“It’s horrible,” said Bollinger, 53, who lives in Carmichael and works as an analyst for the state. “You always feel guilty. You always try to make things better for them, and you feel so helpless seeing them decline. Trying to give them some quality of life, you feel like you’re beating your head against the wall.
“No matter what you do, it isn’t enough.”
For families trying to do what’s best for aging relatives, there are often more questions than answers: How do they decide between home care and care in a facility? Is assisted living a good option? How much will care cost? Considering the frightening reports of abuse and neglect in licensed homes, how do families know if their loved ones are receiving good care?
With the number of 85-year-olds soaring to almost 6million next year – and the leading edge of the nation’s 76million baby boomers close on their heels – the problem is both urgent and growing.
Across the country, according to the National Survey of Residential Care Facilities, more than 1million older adults receive care in some 31,000 assisted living communities, which typically provide housing, meals and help with daily activities such as bathing, toileting and medication management. That figure includes the 150,000 Californians living in the state’s 7,500 residential care facilities for the elderly, 80percent of which are six-bed board-and-care homes.
Another 3million Americans are cared for in nursing homes, Centers for Medicare and Medicaid Services data show. Yet another 6million adults age 65 and older receive some sort of care in their own homes, according to AARP estimates.
And thousands more elderly people are one crisis away from needing care – a broken hip, a stroke, a heart attack – but it’s the rare family that investigates elder care possibilities before the situation is critical.
“We get these calls all the time,” said Carole Herman, founder of the Sacramento-based Foundation Aiding the Elderly, which advocates for care home reform. “I have a client in every state now. These people are desperate to find people to answer their questions.
“I get these calls from all over. ‘What do we do? What do we do?’”
Understanding the options
The spectrum of options for seniors varies as the need for intervention escalates.
Independent living communities and retirement communities are intended for older adults who are healthy and active, capable of taking care of their own needs. When seniors in declining health require more help, assisted living homes – known in California as RCFEs – allow them to live in small rooms or apartments but receive help with meals, taking medications, getting in and out of bed and other activities of daily living.
Besides giving that same custodial care, skilled nursing homes also provide medical care and, often, rehabilitation services.
Continuing care communities provide all of the above options on one site, with residents graduating from one level of care to another as age and infirmity require.
Prices are steep: depending on the facility, more than $3,500 a month for assisted living in California and more than $6,500 a month for nursing home care. Both Medicare and Medi-Cal will cover all or part of skilled nursing costs – but Medicare doesn’t cover assisted living at all, and Medi-Cal funding varies. And most older adults still lack long-term care insurance.
Studies show that more than 80percent of older people prefer to continue living in their own homes, even if their health begins to deteriorate – and the vast majority do so, often with the help of family caregivers or paid care from in-home health agencies. But again, the cost is high. In-home health care can cost up to $350 a day for 24-hour, live-in care. That’s more than $127,000 a year.
“When people come to us for help, the first thing I do is ask nosy questions about their finances and military history,” said Cynda Rennie, a resource specialist with the Alzheimer’s Aid Society, who helps families evaluate their care possibilities. “I’m searching for anything that could help with expenses.”
Jerry Schreck found few options when his aging father needed care more than two decades ago. His research into care homes later led him to found About Elder Care, a private Roseville referral agency, which receives compensation not from families, he said, but in the form of finder’s fees from the care home the client chooses.
“It’s important the agency have a good inventory of homes,” he said. “It’s important that they inspect the homes and oversee the homes they work with the most. They have to act like they care. It’s important that agencies guide people through the whole process and talk to them about options.
“It’s best to have a local firm to assess the person who needs care. And it’s helpful if the agency will drive the family around to visit facilities.”
Without a reliable private referral agency, California families are in many ways on their own in finding elder care. While parents of public school children can easily find school test scores and rankings online, there is no similar system for elder care facilities.
Community Care Licensing, the state agency that licenses California’s 7,500 assisted living homes, does not make its complaints or inspections available to consumers online, and reviewing these documents in person can be a cumbersome process.
“The bottom line question is, how do consumers find out what they need to know?” said Patricia McGinnis, executive director of California Advocates for Nursing Home Reform. “And the answer is, they don’t, unless they know somebody in that facility or there’s been a newspaper story about it.”
Recent news stories give consumers reason to be wary: Last month, managers closed a Castro Valley RCFE called Valley Springs Manor, allegedly leaving infirm residents there without caregivers. In March, a Sacramento jury awarded $23 million in a wrongful death suit against Emeritus Corp., brought by the family of an elderly woman with Alzheimer's disease who died within months of leaving an Emeritus facility in Auburn.
More than 80percent of California’s senior care facilities are for-profit institutions, and almost half are owned by big corporate chains.
The ‘Sandwich Generation’
When retired Tower Books employee Norman McCabe’s fragile health worsened in 2010, he ended up in a Sacramento hospital, then in a skilled nursing home for several weeks of rehabilitation. Following rehab, his wife – Evelyn Boggs, a registered nurse who worked for 20 years as a hospice program supervisor – placed him in a Rosemont board-and-care home for a few months.
“But he wanted to go home,” said Boggs, 77, who lives in Land Park. “I was a nurse. I was almost 75 then, and I’d semi-retired. So I thought I’d go ahead and retire and take care of him.
“There wasn’t any reason I couldn’t do it. I had a home health aide hired before he came home. It’s like the old saying, ‘You save your money for a rainy day.’ And now it’s raining.”
Boggs recommends that families rely on hospital social workers and discharge planners for help finding the appropriate care for loved ones. Sometimes, families think they can provide care themselves at home – but the reality of lifting and diapering an elderly relative, of trying to prevent someone with dementia from wandering in the middle of the night, often makes that impossible.
Boggs’ husband died a year ago at age 77.
“We had two years with him at home, honoring his wishes,” she said.
Victoria Bollinger knew little about elder care when she got the call in early May 2011 that her mother was in the hospital after a stroke. She took a long leave of absence from work, flying back and forth to Arizona to sit by Cotton’s bedside, sort through her finances and deal with medical professionals in the hospital and, later, a skilled nursing center. That July, she moved her mother home to Sacramento, to the first of a series of small, private board-and-care homes.
In one home, her mother, now 83, complained about the food, Bollinger said. In another, residents sat and watched TV all day. And in another, Bollinger said, she worried that her mother was isolated too often.
“The care home staff are all nice people,” she said. “They’re wonderful. But you go in thinking they’ll provide wonderful care, and all the things they tell you aren’t necessarily true.”
Bollinger’s plate is full. Earlier this year, her husband had heart surgery. Their two children are 13 and 17. She worries that she’s not there enough for her husband and family – and not there enough for her mother, either. Because of the pressure, her own health has started to suffer.
“I’m in the Sandwich Generation,” she said. “All this has turned my life upside down. Finding care can be so frustrating.
“You just want people to do what they say they’re going to do. But I’m not going to give up hope.”
Editor's Note: This story has been amended to say that an Alzheimer's patient whose family was awarded $23 million in a wrongful death suit died after leaving an Emeritus facility in Auburn.
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