SAN JOSE, Calif. — 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.”
Caregiving can be immensely rewarding, driven by love and dedication.
It is also exhausting, expensive and poorly supported by a medical system that delivers life-prolonging miracles, but little help for loving care at home in life’s fragile years. Caregiving bankrupts families, isolates loving spouses, delays retirement or forces us to pass up promotions.
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.
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, California’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 environment.
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 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.”
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 prolonged periods of physical dependency with few relatives nearby. And the nation is growing older. People 85 and older – those most in need of long-term care – are the nation’s fastest growing population group, climbing to about 8.9 million by 2030.
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.”
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 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?
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.
Caregiving can also strain retirement income, because time off work reduces pensions and Social Security benefits.
And the costs of care are stratospheric.
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.
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, 71, talks to her husband, John, who was suffering from neurodegenerative disease, at their San Mateo, California, home on July 17, 2012. John passed away on October 23, 2012. (Dai Sugano/San Jose Mercury News/MCT)×
Eric Valor, 43, who has ALS, which causes progressive muscle weakness, shares a moment with his mother, Joan, as their dog, Amelie, visits him at his Aptos, California, home on October 30, 2012. Valor needs 24-hour care, seven days a week. His parents moved into a house to accommodate his disabilities and hired a fleet of caregivers, to make sure he's clean, fed and breathing safely. (Dai Sugano/San Jose Mercury News/MCT)×