In the United States, the typical caregiver is a 48-year-old woman providing care for a relative, according to a 2009 report by the American Association of Retired Persons. The report states that 31.2 percent of U.S. households have had at least one person serve as an unpaid caregiver within a year. The “sandwich generation,” adult children who care for both their parents and their own children, are a subset of these caregivers.
Many Nikkei are concerned about caregiving as well. Dianne Kujubu Belli, chief administrative officer of Keiro Senior HealthCare in Los Angeles and executive director of The Institute for Healthy Aging at Keiro, said that “aging is a central issue in our community.”
According to 2009 U.S. Census data, 23.6 percent of Japanese Americans are 65 years or older, whereas only 12.9 percent of the total U.S. population fits that same demographic.
“The entire world is aging, but the Japanese American community is more similar to Japan in demographics than the U.S.,” Belli told the Nichi Bei Weekly. Belli added that the rest of the U.S. would not reach similar demographics until 2050.
At the same time, Diane Wong of J-Sei (formerly Japanese American Services of the East Bay) in Berkeley, Calif., said families are having a harder time providing for their aging parents.
Adult children of seniors are more likely to be employed, thus decreasing their availability to help, Wong wrote in an e-mail. “People are having kids later these days, and the older adult may have an increase in needs right when their children are in the throes of parenting their own kids.”
According to the Family Caregiver Alliance, 26 percent of Californian caregivers reported finding caregiving for people without significant memory problems “emotionally stressful.” The figure climbed to 44 percent for caregivers looking after those with severe memory problems or dementia. Forty-five percent of those surveyed showed mild to moderate levels of depression.
Overall, however, Wong said there is dedication. “For Nikkei families, there is a huge commitment to quality care, to duty and responsibility and respect,” she said.
Organizations like Keiro, J-Sei and Kimochi Inc. in San Francisco aim to help Nikkei seniors live comfortably as they start requiring more help.
Offering relief to caregivers
When an adult child must intervene in their parent’s life to become a caregiver, the experience is often stressful for the whole family.
“A typical caregiver is a woman with a teenage child. She has a part-time job and is generally a very busy person,” said Belli of Keiro.
Judy Evans and her family started caring for her mother, Teiko Urabe, when she started to show signs of Alzheimer’s disease in 2000.
While her husband would help, Evans needed more support in caring for her mother. “She was burning pots,” Evans said. “I couldn’t even leave the house since she’d put a pot of water on the stove to boil, and just forget.”
Meanwhile, her son had music lessons and concerts to attend. “He’s 16 you know, not quite driving yet … so I have to drive him.”
She had contacted Kimochi, but their services were too far away and did not fit her mother’s needs. She considered placing her mother in Kokoro Assisted Living, but found cost was an issue.
Kimochi aims to help keep seniors living healthily and independently, and give a senior’s adult children peace of mind. Fumiko DiDomizio, a caseworker for Kimochi, said the organization offers families a list of resources to help care for their parents, including delivered meals, in-home care options or socialization opportunities for seniors. J-Sei and Keiro also said they have similar services.
“Those in the sandwich generation are stressed from having to call all over the place to get the resources they need,” DiDomizio said in an interview conducted in Japanese. “Even if it’s not a resource Kimochi directly offers, we try to provide them with contacts for those they can get help from, whether it be J-Sei in the East Bay, or a non-Japanese American resource like SF Paratransit,” she added.
“Adult day care service is also a cheaper alternative to having in-home care or going to an assisted living community,” DiDomizio said. “We provide some exercise, lunch and some activities, plus transportation. We charge on a sliding scale, typically $30 to $40 a day, which is far more affordable than paying $10 to $17 an hour for in-home care.” The day care service allows family caregivers to take a break when they need it.
DiDomizio also runs the monthly caregiver support group, which offers advice to family members who care for a parent.
Evans was referred to J-Sei, which is closer to her home in the East Bay. J-Sei, which has a list of potential in-home helpers, gave Evans a number of people she could call whenever she needed a break. “I needed somebody that spoke the language,” Evans said.
J-Sei offers a multigenerational approach to its caregiving. “Every time we work with a family, we realize that there are many family members of all generations impacted by change,” Wong said.
The East Bay organization offers a monthly Saturday Morning Lecture series, which discusses topics on caregiving, as well as programs involving youth.
To supplement the care for seniors that families must provide, Keiro offers extensive support for caregivers in Southern California. Since 2001, the organization has put together 16 caregiver conferences throughout the region. The conferences offer an opportunity for caregivers to come together and share experiences and to understand “they are not alone.”
Challenges in finding, offering care
“A common area of disagreement between children and parents is the perceived need for help,” Wong said. “The parents think they are fine without extra assistance or outside help. However, the children feel that perhaps the parents aren’t as safe, independent or healthy as they could be.”
Even when seniors accept help, some might not want a stranger caring for them either. “Many times (seniors) only want the help from their family members, but this isn’t always possible,” Wong explained. “It is hard to negotiate this conflict.”
For the Okazaki family, caregiving became a priority when Yoko Okazaki slipped and fell earlier this year. Okazaki was diagnosed with Parkinson’s disease in 2001, but had recently been living relatively healthily with her husband Terumi Okazaki.
For the past decade, the couple’s oldest son, Ted Okazaki and his wife, Linda Okazaki, would occasionally check in on his parents, but they increased their involvement following Yoko Okazaki’s fall. He helped his parents move to the Bay Area in 2001, and has since helped them with their housing needs. He also said he has recently been assisting them with their finances, medication and in-home care.
These days, Okazaki looks in on both of his parents. “I now spend time focusing on dad,” he said. “It’s so easy to focus on the Parkinson’s, or a broken back from a fall. I feel I should make sure he’s doing OK too.”
“We stepped in and said they needed either assisted living or in-home care,” Linda Okazaki said. “We saw homes catering to Nikkei, but we all agreed that they wanted to keep an independent life.”
A Nikkei retirement home, Linda Okazaki said, did not suit her father-in-law. Yoko Okazaki is a native of Japan and could live in a care home oriented for Japanese Americans. Terumi Okazaki, however, is a Nisei who enjoys his independence. “He still drives, he smokes, it wouldn’t work,” she said. “T wants to be independent. He enjoys his privacy, but (Yoko Okazaki) needs Nikkei care too. And wherever they go, they need to go together.”
The elder Okazaki also expressed his desire for privacy. “I didn’t like working with people,” he said, recalling the 51 years he spent in the U.S. Air Force, doing industrial relations work. “Yoko tells me we should be going out. Maybe we should … but I spent my whole life hearing other people gripe in the Air Force, so maybe I just want to take it easy.”
DiDomizio of Kimochi added that families might face independence issues even when they accept hired help. Seniors sometimes restrain themselves from “bothering” their helpers. “We tell families to not hold back when they want something. Some seniors will try to adapt to the caregiver when it should be the other way around,” she said.
Cultural differences may also complicate planning for care. Kimochi offers advice to families for making pre-funeral arrangements, a topic some Nikkei families hesitate to address. “Japanese people typically don’t make pre-funeral arrangements. Normally in America, if you die, you’re taken to the hospital and the mortuary comes to the hospital to pick you up. It goes very smoothly if you have everything set in advance,” DiDomizio said. “But the Japanese sense of privacy can cause panic when a loved one passes away; some people can’t even find their parent’s checkbook — it used to be you didn’t even know how much money was in the bank until your father one day just told you, ‘well that was the last of it.’”
J-Sei’s Wong said that ideally families will include their parents in the process if they are still capable of making their own decisions. “The health and safety of the individual is the priority and either the parent or child can begin by contacting a senior service organization that has experience with care coordination or case management,” Wong said. “Case managers will help a family assess the situation, identify challenges and solutions and link the family to what is needed.” Whether the needs are in-home care or placement in an assisted living facility, Wong stressed that the family must identify priority needs for the senior to live healthily and happily.
While the well-being of aging parents is key, caregivers themselves are under a lot of stress. Keiro’s Belli noted that family caregivers themselves face challenges. Adult children feel guilt, she said. “Am I spending enough time? You can get angry or stressed due to your parent’s neediness. You get the feeling you’re not being as patient as you hoped to be,” she said.
Caring for her mother eventually took its toll on Judy Evans. As her mother got worse, she started becoming paranoid as well. “She would wake up in the middle of the night and I’d have to spend hours trying to calm her down,” she said. “We thought she would live out her days here (at the Evans’ home in Concord), but I didn’t know it would get that bad.” She ultimately changed her plans and placed her in a Japanese American care home in the East Bay.
Limitations in outreach
While DiDomizio noted that the Alzheimer’s Association has a Japanese-language hub for those suffering from dementia, and that Kimochi has a listing of elderly care facilities in the Bay Area, Evans said there was a dearth of resources.
“When you’re a minority and sick, your choices are a bit more limited.” While Evans had taken her mother to Sakura Kai in El Cerrito, Calif., as her condition worsened, adult day care services no longer fit her needs. More recently, Evans’ mother had to move once again, this time to a non-Japanese speaking care home that specialized in caring for people with dementia. Evans said her mother is doing better. “They’re great, but I go three to four days a week so that she can hear and speak some Japanese and eat something she’s used to,” she said.
J-Sei, like Kimochi, has meal delivery programs, shuttle services, and a senior center to maintain the wellbeing of seniors.
The Okazaki family, however, said they lived outside the reach of some of J-Sei’s services. Ted Okazaki said the Contra Costa County area lacked Nikkei resources for seniors.
“The bento lunch program doesn’t reach us here, and we can’t really get them over to their senior center either,” he said. “We did have a case worker come in to check (from J-Sei), but they are now more reactive to our needs than proactive.”
The Okazakis have since hired a number of Japanese-speaking helpers through J-Sei, who Ted Okazaki manages. Without them, he said he “wouldn’t have a life.”
Offering comfort to seniors
DiDomizio explained that Kimochi aims to “allow seniors to live at home as long as possible, as safely as possible, and as healthily as possible,” she said. “We emphasize social activities to keep seniors active and help them get out when they can’t do it themselves anymore.”
Kimochi offers a number of social programs, such as: its lunch program, exercise classes, busing services, cultural activity classes and its Club Nikkei activities that takes a group of seniors out for a low cost activity or meals.
DiDomizio said if elders don’t get out of the house, their health can get worse. “If they stay in, their legs can get bad, and then they can trip, get hospitalized and get even worse.”
J-Sei’s Wong also described how adult children, living farther away or families without direct connections with their elder members require the organization to step in and help administer services on behalf of the family. “Seniors who don’t have children living close by may not have the extra help needed and in some cases their living condition can decline without anyone noticing,” Wong wrote. “When people are more isolated they may not get out, have rides to medical appointments, socialization, shopping for needed healthy foods or supplies. They may not bathe or groom as carefully or regularly.”
Wong said her organization helps arrange caregivers to assist seniors with their daily lives or find better housing situations and provide the food and medical help they need. Through the outreach, Wong said the case manager also keeps in touch to ensure living conditions are not worsening and helping to correct them if they do deteriorate.
As parents age, their adult children must face the reality that those they have relied on must now rely on them. The time and care needed is taxing for many families. While there are services to alleviate the stress and hardship, the experience is still daunting.
“I need to take care of them, I’m the chonan (first-born son),” said Ted Okazaki. “I sometimes joke with my brother that I quit my job and that he can be chonan.”