30 Nov Families Step into Caregiving Long Before They Realize It

“If you ask a caregiver, are you a caregiver, they will probably say no,” says Susan DeMarois, director of the California Department of Aging. (Screenshot captured by Malcolm Marshall / The CC Pulse)

By Malcolm Marshall

When Dan Salinger noticed that his father had a large bruise and cuts on his face but didn’t know where they had come from, it marked a turning point for the entire family. It was the moment Salinger and his brother realized they were caregivers.

Salinger has been caring for his father for the past five years. But looking back, he says the real journey began more than a decade ago, when the first signs of dementia appeared. At the time, he didn’t think of himself as a caregiver. He thought he was simply helping out.

“I was a caregiver long before I knew I was a caregiver,” Salinger said. “I’ve had my dad with me for about five years, but the caregiving journey really started about 10 or more years ago.”

Salinger was one of two family caregivers who spoke at the Nov. 19 America Community Media press briefing, “Who Cares? Caregivers Often Invisible but Central to Our Lives,” co-hosted with the California Department of Aging. Both he and fellow speaker Alma Valencia described how caring for a parent living with dementia changed their lives in ways they never expected.

For Salinger, the early signs appeared quietly. While his father was still living alone, he and his brother spent time with him daily, taking care of things around the house.  

“One day, he walked into the room that he had napped in so many times and said, ‘Oh, you put in a new room.’ ” It was the moment they realized something more serious was happening.

There were other signs. Salinger said he found his father walking around with a large cashier’s check in his wallet, something completely out of character. The check was bent and torn, and if he had lost it, the money would have been gone forever. He also began getting lost while driving routes he had traveled many times before. 

Then came the bruises and cuts, and they realized their father could no longer live safely on his own. “This is not normal aging. Something is happening,” Salinger said.

Valencia described a similar experience with her mother, whose symptoms began in her late 50s. Her behavior changed. Bills piled up. Strange visitors started coming by the house. “Undesirable people would come and visit Mom, and I’m like, ‘Who are you inviting, Mom?’ ” Valencia said. “Her behavior just started to change, and she was in her late 50s, and I thought, this isn’t normal.”

At first, she and her family explained the changes away as stress, menopause or the aftermath of a difficult divorce. But as the symptoms escalated, Valencia had to step in. 

“It officially started in 2015, when I had to sell my mom’s house,” she said. “Like many of us, we don’t realize that we are caregivers. We just step into the role of doing our due diligence. We’re good daughters, we’re good sons, we’re good family members helping each other out.”

Eventually, she became her mother’s full-time caregiver, taking on responsibilities she never imagined. “I had to step into the role of becoming my mom’s power of attorney, doing things that I had never even heard of, and navigating systems that I just never thought I would have to.”

Doctors first misdiagnosed her mother with depression and alcoholism. Years later, she was diagnosed with dementia, and only later with frontotemporal dementia, a more specific and complex condition. 

Both Salinger and Valencia spoke about how caregiving reshaped their family dynamics and their sense of self.

“And it doesn’t matter what race, creed, religion, economic status — dementia does not discriminate,” Salinger said. “It comes after people, and the ravages are going to come regardless of what your standing is in life. That’s the reality that we have been living with for the last five years.”

While she was trying to figure out what was happening with her mother, Valencia was also working full-time in the fashion industry and moving up the corporate ladder. When COVID hit, her mother had to move in with her family full time, and Valencia suddenly found herself responsible for every aspect of her care. 

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Her mother eventually qualified for In-Home Supportive Services, a state program that allows eligible caregivers to be paid for providing in-home care. But the transition was difficult. 

“It was very challenging to let go of my career and step into this new role of, ‘OK, I’m an IHSS provider,’ ” Valencia said. 

Susan DeMarois, director of the California Department of Aging, said IHSS is the largest Medicaid home- and community-based waiver in the country, serving more than 800,000 children, adults and older adults. “And the majority of the direct care workers, the people who provide the support in the home, are paid family members and relatives,” she said.

DeMarois emphasized the importance of ensuring that the state’s 7 million family caregivers know about the resources available to them. She said half of all adults in the United States help a loved one with everyday tasks, yet many do not identify as caregivers and therefore do not seek support.

“If you ask a caregiver, are you a caregiver, they will probably say no,” DeMarois said. “But when you ask, do you drive someone to medical appointments, do you pick up prescriptions, do you cook and deliver meals? These are basic tasks that really help our family and friends. And there are many more intimate tasks.”

Salinger said caregiving is rarely planned for, and most families fall into it. When it happened to him, he had no idea what services were available. 

“The most important resources in the beginning would be educational,” he said. “Understanding what’s happening and understanding what is going to happen to the caregiver emotionally as they try to learn these new skills and cope with somebody with dementia.”

He said caregivers need reassurance that their reactions are normal, and reassurance that others have gone through the same experiences. 

Valencia said she wishes she had access to accurate information from the moment she first heard her mother’s diagnosis. “As soon as I heard the dementia diagnosis, I immediately went to the Alzheimer’s Association, but my mom was not displaying any of the symptoms that a person with Alzheimer’s would have, and so I felt very lost. So I really had to reach out through social media.”

Sonoma County’s Adult and Aging Division director Paul Dunaway said support is available through the network of Area Agencies on Aging in all 58 counties. These agencies offer caregiver training, support groups, respite programs, and referrals to services. 

He said they focus not only on the needs of older adults but also on the needs of the family members who care for them.

“Your local Area Agency on Aging… is well aware of the challenges and priorities and has resources not only to support those who need care, but also for those who are doing the caring — for the unpaid family and friends who set aside responsibilities and passions.” 

Because each caregiver, family and community has different needs, Dunaway said AAAs offer a wide variety of training and support. 

He encouraged anyone in need to reach out to their local AAA to learn about the options available. 

Dr. Donna Benton, director of the USC Family Caregiver Support Center and the Los Angeles Caregiver Resource Center, said the long-term care needs families face today are not reflected in current public policy.  

“Society hasn’t caught up with this change in needs,” Benton said, “particularly how complex it is now to care for somebody in your home.” 

“Caregivers are invisible, in part because it’s what we do. It’s our mom, it’s our dad, it’s a friend, it’s a cousin, it’s a sibling,” she said. “And because we do this without thinking of ourselves as caregivers, we sometimes, as we’ve heard, don’t think to ask for help. We don’t think to look for services for ourselves, sometimes even as much as we look for services for the person we are caring for.”