The day she brought a hospital bed into her den, Susan Meyers' role in life changed dramatically, from adoring mate to devoted caregiver.
Like one of every six Californians, she was taking on a job that doesn't pay, but costs sleep, savings and sometimes physical well-being.
Her beloved, John, the charismatic flight surgeon and avid tennis player who had wooed her with song and dance, was dying of neurodegenerative disease. Not only was she losing a partner, she was shouldering new responsibilities, from running their San Mateo household to managing his medications, disinfecting urine bags and tucking in his blankets to keep him safe and warm in bed.
"At least," she said, "he is here at home."
The challenges of caregiving are a reality of daily life for more than 6 million Californians who help parents, partners, children or friends -- with everything from meal preparation to taking care of medical needs -- even as they worry about their own futures.
The financial, emotional and physical sacrifice of caregivers is the subject of this installment of the ongoing series on the Cost of Dying.
Blessings and costs
Joan Valor cherishes caring for her 43-year-old son, Eric, who five years ago was diagnosed with amyotrophic lateral sclerosis, a debilitating disease that causes progressive muscle weakness.
"It's been a blessing to have him here," she said. "Who knows him better than family?"
Because Medicare and private insurance don't pay for caregivers, Eric Valor sold his beachfront Aptos cottage and was forced to spend his savings.
Once, he held a high-tech job at Mercedes-Benz, surfed in Panama and scuba-dived in Fiji; now, he's on Medi-Cal, the state's health program for the poor.
So he lives with his mother and stepfather, who sold their home to move to a place in Aptos better suited to Eric's needs. They barter his stepfather's contracting services to get free or discounted equipment. They used their dwindling savings to create a wheelchair-accessible bathroom and buy necessities not covered by Medi-Cal, such as a $4,600 air mattress, a vehicle that holds a wheelchair, an extra caregiver for his daily shower, or myriad other basics, from gauze to sterile cotton swabs.
He credits his survival to his comfortable and familiar
The cost to his family so far: $600,000. Medi-Cal now pays for his caregivers, but their low pay for high skills leads to frequent turnover. Twenty-four hours a day, caregivers monitor Eric's ventilator, breathing and feeding tubes and help clear secretions to keep him from choking.
"Eric is not the problem," said his mother, Joan Valor, 70. "It's the lack of money to care for him that's the problem -- to give him the life he deserves and needs. But we're fortunate. A lot of families don't have what we have."
The family burden
Such dedicated families provide most of the long-term care in California, often at great financial, physical and emotional sacrifice, according to the Family Caregiver Alliance in San Francisco. Their unpaid service has an estimated market value of $45 billion annually.
Bearing witness to life's end, caregivers push wheelchairs, ease pain and share stories.
Then, when unable to keep up, they turn to more formal alternatives -- such as in-home care, assisted living or nursing home care -- and find few good choices in a system that is fragmented, uncoordinated and extraordinarily expensive.
What's happened, experts say, is that life's final chapter has changed.
A century ago, most people sickened and died quickly from disease or sudden injury, often surrounded by an extended family.
Now many Americans live with chronic, progressive illnesses, typically after
Yet the modern health care system -- which rewards cures, not caregiving -- hasn't adapted to these trends, said John Schall, president of the Family Caregiver Alliance.
"Family caregiving is the backbone of the long-term care system in this country," Schall said. "As chronic conditions continue to increase, and we live longer, the burden will increase."
As Pleasanton resident Orland Silva stayed at home dying of cancer, his five adult children took around-the-clock shifts so that their 71-year-old father stayed clean and comfortable under hospice care. One, with a leave of absence from work, covered mornings; another attended to late afternoons and evenings; a third spent the night. Two others helped run errands and supported their mother.
Their gift of time made it possible for Silva to enjoy afternoon reruns of "Gunsmoke" with his grandson and chat with friends from his beloved Bible study fellowship.
"I have a household of people here just about every day," said Silva, before his death in May. "I am just experiencing the love being poured out from family and friends."
More than two-thirds of people older than 65 will require long-term services at some point in their lives, according to the U.S. Department of Health and Human Services.
But such care is not just for the old and frail. About 40 percent of care goes to people younger than 65, like Valor, who need help due to disease, injury, developmental disabilities or severe mental illness.
"Caregiving is hard. But it doesn't have to be this hard," said Dr. Ira Byock of Dartmouth Medical School and author of "Dying Well."
Susan Meyers sought to keep John, 84, at home so they could savor some final private moments during his decline.
She treasured their quiet time together in their living room.
"Some evenings, we'll put on some nice music, maybe Frank Sinatra or some soundtracks," she said, before he died in October. "Even if he just squeezes my hand a little bit, it makes it all worthwhile. It is one of the really precious things about him being here."
But she paid a physical and emotional price. Her weight dropped to 90 pounds. She fell down stairs while trying to help him. With a lifetime of saving, the couple was able to hire weekday help. But Susan took on many tasks and suffered pangs of isolation and inadequacy.
"Sometimes I'd like to bolt, but I never would,'' said Meyers, now 71. "Sometimes you just kind of tear your hair out.''
After she had a midnight scare of soaring blood pressure and heart palpitations, she called an ambulance to take her to the hospital. Even then, she worried: Who would care for John?
Heavy toll on families
For society, it is far cheaper to keep people out of the hospital or skilled nursing homes. And most say they hope to die at home, far from hospitals' rescue credo and the technological panoply of beeping monitors and dangling drip lines.
But caring for loved ones exacts a heavy toll on families, even though it can be a source of great personal satisfaction.
They sacrifice jobs and careers. One national study found that a third of caregivers cut back their work hours to devote more time to loved ones. Others pass up promotions or job opportunities.
Working caregivers find few resources, such as eight-hour day care.
"I can't leave my husband alone," said 59-year-old Barbara Gruenwald, a San Francisco financial consultant who struggled to find all-day care for her husband, John, who suffers from Lewy body dementia. "But he doesn't need skilled nursing. He doesn't belong in a facility. And it would be devastating to him."
Some must quit work altogether; Joan Valor gave up her real estate job. When Eric's caregivers sickened, she took over the job -- for four days straight. And when a caregiver quits, it can take months to find a suitable replacement.
Caregiving can also strain retirement income, because time off work reduces pensions and Social Security benefits.
And the costs of care are stratospheric.
A home health aide in the Bay Area costs $25 an hour, on average. That's $52,000 a year for 40 hours of Monday through Friday care. Alternatives are also expensive: about $55,000 a year, on average, for an assisted living facility in the Bay Area.
Families pay out of their own pockets: Savings. Social Security. Reverse mortgages. Pensions.
That's because Medicare pays only for treatment, not in-home "custodial care." Hospice can help, but its patients must be judged to be within six months of death -- and even then, its benefits don't cover prolonged around-the-clock care. Private insurance doesn't cover care, unless the patient has a long-term care policy that comes with premiums ranging from $2,200 to $7,700 a year for 65-year-olds.
Medi-Cal offers some support, but patients must be poor or spend down their savings to qualify.
"I'm bankrupt," Eric Valor said, using a computer above his bed that lets him type messages with his eyes. "It was terrible to see everything I had fought so hard to get -- my perfect little life -- taken due to something over which I had no control."
The national health care reforms coming in 2014 expand home and community-based services through Medi-Cal. But the state's long-term care system is complex and fragmented, administered by disparate state agencies with different eligibility requirements, target populations and services.
Home care, an experience seared into the minds of survivors, brings its own grace.
If she loses Eric, Joan Valor said, "I will have had the opportunity to spend quality time with him. ... I will have had every day to say goodbye."
Susan Meyers was at John's bedside last month for his final moments. She awoke after another restless night and found her husband struggling to breathe. She raised an oxygen mask to his mouth to help his failing lungs, then felt for a pulse. Under his strained breathing, she heard no heartbeat.
"He closed his eyes and went away," she said. "He was gone before his last breath."
She had long disliked the big hospital bed where John slept because it separated them.
But on the night after he died, she climbed into it for her own rest -- lonely, exhausted and thankful that it had helped her care for him.
"He never had to leave," she said. "For that, I am so grateful."
Contact Lisa M. Krieger at 650-492-4098.