Caregiver stress and support

Family caregiving spans across all generations and communities, including, but not limited to baby boomers, Gen X, Gen Z, millennials, LGBTQ+ and the silent generation. According to AARP’s “2020 Report on Caregiving in the U.S.,” more than one in five Americans have cared for an adult or child with special needs at some time in the past 12 months.

Linda (née Higashi) and Rick Yoshida are in no hurry to qualify for the 55-plus discount at Denny’s and other senior-friendly establishments. However, over the past few years, the onset of health conditions more common among older adults have prompted necessary changes in their diet and lifestyle. “Now that we’re older, we really need to be careful with our health, especially because we’re the main caregivers for so many people. We need to stay mentally and physically healthy,” Linda says.

TAKING CARE ­— Rick, Emily and Linda Yoshida. photo courtesy of the Yoshida family

Family caregiving has been a part of Linda’s life since her childhood. As the sister to a younger brother with developmental disabilities, she learned early on what it meant to be sensitive to another’s needs.

As a Japanese American, Linda describes her generational identity as “atypical.” Her father was a Nisei who went to Japan, but due to a citizenship processing error, he returned to the U.S. before being deported. He had “a Kibei accent similar to that of Mas (Arai),” the protagonist in author Naomi Hirahara’s critically acclaimed mystery series. Linda’s mother was raised in China, and “after the war, worked as a black marketer, backup jazz vocalist and a waitress in a heavily yakuza controlled area.” She left Japan and came to the U.S. in the mid-1960s. Rick’s family was incarcerated in Poston, Ariz., Tule Lake, Calif. and Bismarck, N.D. during World War II.

Linda delayed her education at San Jose State University and sacrificed her independence and personal life during her father’s long cancer battle. She became the only driver in the family during his illness, and was “the family chauffeur” after he passed away. For Linda’s mother, the loss of her husband, a difficult work situation and the stress of becoming the primary breadwinner took a toll on her. As a result, she had congestive heart failure and needed triple bypass surgery. Linda reduced her work hours to be available for her mother’s frequent medical appointments and the family’s needs, which often required several hours of waiting. At the time, Linda worked for a small business with no Family Medical Leave Act benefits.

“It wasn’t easy, but after all they did for us it’s the least I could do,” Linda says of the sacrifices she made to care for her parents. She described the time she spent with them as quality time, as they told her stories of the past and her family history that she might not have otherwise heard.

Although Linda’s personal life took a backseat while her peers were dating and marrying, she eventually met Rick through a mutual friend. Some would call it destiny or fate. Their love, shared Christian faith and passion for both “Star Trek” and “Star Wars” eventually led to marriage in 2004. Two and a half years later, Emily was born. Meanwhile, Linda’s mother began having more medical and surgical appointments. Linda recalled, “I’d be carrying an infant with one arm and dragging my mom with the other.”

As a member of the “sandwich generation,” Linda juggled caregiving for her mother while learning to parent a child with autism, undiagnosed learning disabilities and ADHD. With no nearby relatives or friends to rely on for help, a friend from Monterey, Calif. often babysat Emily when he was in between jobs. After Linda’s mother passed away, Rick and Linda brought Jeff Higashi, Linda’s brother from San Carlos, into their Sunnyvale home. Jeff suffered from diabetes complications, in part because he was unable to identify physical changes and symptoms he was experiencing.

While his physical condition is now stable, Linda took Jeff to medical appointments and, during crises, the ER. Like many caregivers, she was in a state of constant alert, never knowing when he would text or call needing help. She spent countless hours advocating on his behalf, doing her best to navigate the challenges of an often broken health care and social services system.

Rick, an electrical engineer (hybrid software/hardware) for a Silicon Valley-based company, was committed to giving more than his best both at work and home. However, the levels of long-term, chronic stress were unsustainable. After he collapsed at work and was put on extended medical leave, something had to change. Through the help of others, he became more aware of his limits, and he “never wants to cross that line again.”

Rick’s father passed away a few years ago, so he and Linda call and try to visit his mother in Watsonville more frequently.

Both Linda and Rick are on medication for prediabetes. Understanding that diabetes is often the precursor to other chronic diseases, they have an overall disease management strategy that includes going for walks, hikes, swimming and getting out — even now.

“During the pandemic, it’s easy to fall back on old eating and drinking habits. Our downfall is junk food, but we’re learning to pay more attention to the cues and underlying reasons for cravings,” Linda explains.

She has learned to ask herself questions such as, “Am I actually hungry or just tired?” When junk food cravings hit and a carrot stick won’t do it, she’ll have a bit of something instead of denying herself and later binging. Linda saw a nutritionist at her doctor’s recommendation and found it helpful, but she also said it’s important to know one’s individual needs. For example, Rick has a history of kidney stones, which means avoiding some vegetables like spinach.

As many Americans are reportedly experiencing weight increases and/or mental health conditions during the pandemic, the Yoshidas are finding ways to manage the added stress. They both participate in a special needs parents’ group through Zoom one or two times a month. Linda has been part of a prayer group for about 25 years. Over the years, the meetings grew less frequent, but due to the pandemic, the five women now meet through Zoom every Monday night. Linda is also rediscovering old hobbies like drawing and needlework. Rick enjoys video and physics-based games that involve building spaceships based on real-life simulators.

When asked what they worry about the most, Linda and Rick fluctuate between their immediate and long term concerns for Emily. Knowing the importance of planning ahead, they have been looking into conservatorship and trusts, and hope to incorporate home modifications that will allow her to continue living in their home after they are gone.

“Respite camps and services through the (California Department of Developmental Services) Regional Centers have been helpful, but we know there will be fewer resources as she gets older,” Linda says, adding that,

“Although it’s tough and, despite progress through private therapies, we know she’ll never do ‘normal’ things like go to college, mingle fully with her peers, live on her own, most likely won’t be married or be a parent, we try to give her a full, enriched life. She’s helped us see how the process of learning to do simple things, like holding and using a pencil, is actually a complex process that we all take for granted. Our faith helps us when we don’t have hope or the answers seem so bleak. We may not be practicing as closely as we used to, but our faith helps us find purpose and helps us see joy in the little things.”

The Yoshidas’ story is just one example of caregivers who are learning and practicing what works for them. As Rick has learned, high levels of stress over a prolonged time can be harmful to one’s health. The following message, often referred to as “Caregiver 101,” is commonly heard at caregiver conferences and events: “Remember, if you don’t take care of yourself, you won’t be able to care for anyone else.” Each family and situation is different, so it is important to be aware of the following signs and symptoms of stress and burnout. (Source: HelpGuide.org)

Common Signs and Symptoms Of Caregiver Stress
Anxiety, depression, irritability
Feeling tired and run down
Difficulty sleeping
Overreacting to minor nuisances
New or worsening health problems
Trouble concentrating
Feeling increasingly resentful
Drinking, smoking, or eating more (or abusing drugs, including prescription)
Neglecting responsibilities
Cutting back on leisure activities

Common Signs and Symptoms of Caregiver Burnout
You have much less energy than you once had
It seems like you catch every cold or bout of flu that’s going around
You’re constantly exhausted, even after sleeping or taking a break
You neglect your own needs, either because you’re too busy or you don’t care anymore
Your life revolves around caregiving, but it gives you little satisfaction
You have trouble relaxing, even when help is available
You’re increasingly impatient and irritable with the person you’re caring for
You feel helpless and hopeless

Caregivers experiencing signs and symptoms of burnout are urged to contact their health provider as soon as possible.

Many resources for caregivers are available in local Nikkei communities such as Kimochi (San Francisco and San Mateo), J-Sei (East Bay) and Yu-Ai Kai Japanese American Community Senior Service (San Jose) in Northern California; Keiro and the Little Tokyo Service Center in Southern California. Although services may be limited or adapted to the current pandemic, caregivers in need of support are encouraged to reach out to their local community center or health provider. Support groups and classes may not be meeting in person, but many are free and available online.

For other areas, referrals for local services can be obtained by calling one of the following:
National Association of Area Agencies on Aging (Gateway to local services and referrals) https://www.n4a.org.
California Department of Developmental Services – Regional Centers https://www.dds.ca.gov/rc.

For current, comprehensive and extensive caregiver information:
National Center on Caregiving/National Caregiver Alliance https://www.caregiver.org/national-center-caregiving.
AARP’s “2020 Report on Caregiving in the U.S.” (includes specific data related to ethnic minorities, Gen-X, Millennials, LGBTQ+, and other communities). https://www.aarp.org/ppi/info-2020/caregiving-in-the-united-states.html.