An older woman stands behind an older man, putting her hands on his shoulders
Raquel Green became the full-time caretaker for her husband, Carlyle, after he was diagnosed with early-onset Alzheimer's disease. Santa Clara County has created a program to give family caregivers a respite subsidy. Photo by Annalise Freimarck.

One of the first times San Jose resident Raquel Green met her husband, Carlyle, he was lying on his side at a festival, smoking a cigarette and trying to act cool. She was 19 and not easily impressed, but when he dropped the cigarette accidentally and got embarrassed, they both burst out laughing.

Married for about 35 years, they’ve been inseparable ever since, and still are, even after Carlyle’s diagnosis of early-onset Alzheimer’s disease at age 59. Raquel is now his full-time caregiver.

Raquel finds a reprieve from caring for Carlyle, 64, through Live Oak Adult Day Services, especially after he wandered away and got lost for about an hour while she was out of the house. He attends the older adult day care, which she called a lifesaver, five days a week for four to five hours while she works as a school bus driver.

“Sometimes I just, I get kind of angry because I can’t believe that this is happening to him,” she told San José Spotlight, tearing up. “I’d say probably for the past three years, I’ve really gone through a major depression. It was hard, it’s still hard, you know?”

Raquel, 57, pays a reduced rate of $25 per day three days a week and receives free day care two days a week under Santa Clara County’s Adult Day Service Pilot Program, which helps with day care costs. The county Board of Supervisors saw a need to further assist caregivers when they unanimously approved the creation of a direct care-worker registry and a respite subsidy program for individuals in May. The county has roughly 177,000 family caregivers, according to the 2023 Santa Clara County Adult Caregiver Study.

The registry aims to consolidate caregiving information for families who may be unsure where to look, including a list of care providers who have undergone a background check. The respite program will offer between $500 and $1,250 a month for caregivers to use on short-term relief from caregiving including out-of-home, in-home and private care.

An older woman and man sit on a brown couch in a house watching funny videos with their young grandson
Carlyle Green (right) was diagnosed with early-onset Alzheimer’s disease roughly five years ago at the age of 59. Photo by Annalise Freimarck.

The respite program is expected to launch next April as the county finalizes eligibility requirements and determines how many people it can serve. There is no set timeline for the registry nor how much this recent push will cost.

Kristina Lugo, CEO and president of older adult services nonprofit Avenidas and caregiver for her parents, said the increased support couldn’t be more needed in the county. Roughly 20% of Santa Clara County residents will be age 65 and older by 2030, increasing to 25% by 2060 according to the caregiver study.

Lugo contributed to the 2023 study and said the registry and respite program are critical.

“Until you’re really in it, you don’t realize how much time and energy is needed (for caregiving),” she told San José Spotlight. “A lot of family caregivers don’t have the ability to take time off to take care of their family, so any support we can give them financially or even the gift of time through respite is (necessary).”

This recent push comes while the county is anticipating $118 million in cuts for fiscal year 2024-25, after it balanced half its $250 million deficit.

Supervisor Joe Simitian, a large proponent of supporting caregivers and care recipients, helped spearhead this recent push for increased support in 2022 by encouraging the study. He said as someone whose parents received help from caregivers, he doesn’t want the budget woes to prevent these crucial programs.

“The county budget is strained. People are struggling to hang on to things that they’ve already got, so this is a hard time to be launching new ventures, particularly as they involve direct funding,” he told San José Spotlight. “But this was an area where I said, ‘We’ve got to find a way to get started.'”

While Carlyle’s diagnosis was unexpected, his family has a history of Alzheimer’s. His mother, siblings, aunts and uncles all have the disease.

Raquel said the first sign something was off was when Carlyle went to get sleep apnea testing. He told her there were only sleep apnea classes in San Francisco, but when she talked to his doctor, she was told there were classes in San Jose.

It was the sleep apnea tests that revealed his memory loss was not from his sleep problems. Raquel said Carlyle has asked her if he’s going to get better and she has had to gently explain to him he’s on medication to slow the effects of the degenerative disease. She said he sometimes breaks down because he realizes his memory is going.

“You would think that things would slow down when you get older and it’s not, it just feels like things are going so much faster,” she said. “It’s like I’m thinking for somebody else, and having to continuously think about what he’s doing, what he needs help with and making sure that he’s doing things that he’s not supposed to be doing.”

For now, Carlyle will continue socializing and playing cognitive games at Live Oak while the county works out the kinks of the respite program. Raquel said it’s hard to imagine anything outside of the day-to-day, but said the respite program could be helpful.

“It would really be a big deal, I think, just knowing that I can have somebody come in so that I could just get a little bit of a break,” she told San José Spotlight. “That would be the biggest thing.”

Contact Annalise Freimarck at [email protected] or follow @annalise_ellen on X, formerly known as Twitter.

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