SAN JOSE — Patt Martin says the worst day of her life wasn’t the day last June that her husband Bill, an Alzheimer’s patient, died. It was two years earlier, when she was so stressed and sleep-deprived that she struggled to even remember her bank PIN and decided to put her husband in a care home after being his primary caregiver for nine years.
“It was the most horrible decision I had to make in my life,” the Fremont resident said. “You just feel like you’re going against the vows you made to each other — in sickness and in health and all that. Your emotions are all over the place.”
When she finally placed him in the home, she paid $6,000 a month out of pocket for his care.
Martin was among the 15.7 million Americans who contributed an estimated 17.9 billion unpaid hours to caring for people with Alzheimer’s in 2014, according to the Alzheimer’s Association. The organization says that 41 percent of those caregivers had a household income of less than $50,000, and 17 percent had to give up their jobs. Faced with physical, emotional and economic hardships, 40 percent of caregivers reported bouts of depression, the Alzheimer’s Association says.
These numbers will only increase as California’s population rapidly ages — prompting some experts to describe the coming demographic shift as a “senior tsunami.” By 2030, the number of Californians 65 and older is expected to pass 8 million, nearly double what it was in 2010. And the number of Californians with Alzheimer’s, a progressive disorder that attacks the brain’s nerve cells, is also expected to double, with a staggering 1.2 million Californians affected. As the state Legislature begins its 2016 session, many caregivers, patients and advocates are hoping for new laws and policies to address the crisis.
Most Americans simply don’t have the means to cover the cost of care for what is now the most expensive disease in the United States, said Ruth Gay, the Alzheimer’s Association director of public policy and advocacy.
“You can be pretty financially robust and not have enough money to care for someone with this disease,” she said. “I know a caretaker who spent her children’s college funds to cover care.”
To keep up with costs, long-term care insurance is “really the only game in town,” she said, but it’s hard to qualify for and is extremely expensive. She estimated that a person who purchased such insurance in their 50s would wind up paying $250 to $300 a month, and the cost to buy the insurance rapidly increases as people age.
Medi-Cal, the state’s health care program for the poor and disabled, will pay for a skilled nursing facility. But these facilities were originally designed for patients with physical ailments, meaning they are often not the optimal solution for a confused or disoriented patient who is active and wandering. And people eligible for Medi-Cal can also apply for In-Home Supportive Services, a government program that helps offsets the cost of in-home care, but the program is not intended to provide round-the-clock care seven days a week — a level of care that many Alzheimer’s patients require. Medicare pays for only short stays in nursing homes.
Martin was 49 and raising teenage twins when her husband was forced to retire at 55 from his job as a human resource manager at Owens-Corning Fiberglas in Santa Clara because of early onset Alzheimer’s. She, in turn, gave up her own position as a director in product supply at Clorox in Oakland to care for him as he gradually lost more and more basic functions.
“You see a child grow, and this was the opposite,” she said.
At first, even as her husband lost his ability to speak, Martin tried to see things in a positive light, shifting their activities to things he could still enjoy like museums and watching sports. Then one day, during their daughter’s college soccer games at Occidental College in Los Angeles, her husband walked onto the field and Martin had to recruit two large men to pull him back to the sidelines.
“It was a huge wake-up call for me,” Martin said. “I realized I wasn’t going to be able to manage him.”
She cried the whole drive back from L.A.
Primary caregivers often end up putting their lives on hold because taking care of their loved ones is so demanding, said Tami Anastasia, a Los Gatos clinical therapist who directs support groups for Alzheimer’s caregivers.
“This stress is 24 hours all day, all night long,” she said. “Caregivers feel this expectation that as the spouse or the daughter or son, you’re responsible for every single need. But this is a disease you just can’t do on your own.”
Caretaking can be so stressful and physically demanding that many caregivers suffer from their own medical complications, Anastasia said. Some even die before the Alzheimer’s patients they’re caring for.
Caregivers also struggle because they have to take care of a loved one at the very time they are grieving the loss of that person, Anastasia said.
“It’s an ambiguous kind of loss,” she said. “They are physically in front of you, but they are not who they were.”
Anastasia facilitates support groups for caregivers at the Alzheimer’s Activity Center in San Jose, where Martin also took her husband to daycare for many years.
The staff works hard to tap into all available financial assistance to avoid turning people away, said Marilou Cristina, the interim executive director of the nonprofit center.
Still, most of the families pay out of pocket. At about $65 a day, a family needing four days of care each week pays $1,200 a month. Of 129 clients, only about 10 pay through long-term care insurance.
Without access to day care services like those offered at the center, caregivers might feel forced to place their family members in care homes even if they don’t think the homes are the best places for them, said Mary Lozano, whose mother, Isabel, is a client at the Activity Center. “For my mom, she would deteriorate. She has to have that familiar person,” Lozano said. “As long as I’m able to, I will have her with me. But it’s unfortunate for the families that can’t.”
Lozano, who moved from San Francisco to San Jose and is taking time off work to care for her mother, said day care services help reduce stress and allow her to complete errands that would be a challenge with her mom in tow. When her mom is at home, Lozano helps her shower, prepares her meals and is constantly keeping watch over her safety.
“She took off so many times on me — in the middle of the night,” Lozano said.
That’s why she thinks it’s so important to improve services for Alzheimer’s patients. “If you don’t have that extra money to have somebody to help, you can’t do it,” she said.
Susan DeMarois, the state public policy director of the Alzheimer’s Association, has been working with state officials to try to address the growing crisis. She was involved with a recent state Senate bill that requires the California Department of Health Care Services to update physician guidelines to elevate the standard of care for Alzheimer’s patients and to ensure that physicians are aware of resources available to patients and caregivers. In addition, she said, state officials and Alzheimer’s Association are working to form a blue-ribbon panel on caregiving expected to get off the ground in the spring. The panel will bring experts together to identify gaps in the financial and human needs and then make concrete recommendations to the state, she says.
“This is an issue that is impacting more and more people and more and more legislators,” she said. “It’s absolutely crushing families.”
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