Caregiving: When It’s Not Your Parents

May 4, 2018 • Feature, In-depth

An intimate look at how two families have poured love and commitment into their different caregiving situations.

By George Toshio Johnston, Senior Editor, Digital & Social Media

The default definition of the word “caregiving” that most people probably have in mind means caring for a parent — and for most people with an aging parent or parents, it can be a thought lurking in the back of one’s mind, a problem to deal with sometime down the road.

But the need to provide care for a family member can also be a child, a spouse or a sibling, and the circumstances can arrive suddenly and unexpectedly.

That was certainly the case for native Chicagoans April Inagaki* and Gregg Oshita, whose lives were changed irrevocably when fate abruptly singled out members of their families in ways that could not be foreseen.

Inagaki’s journey (and that of her siblings) as a caregiver began in 1998 when her younger sister, Marilyn, injured her tailbone when she slipped and fell on a garage floor. While it might sound like a rather benign-sounding accident, it left her in tremendous pain.

“She was taking a lot of painkillers, and she had an accidental overdose,” said April, 60, “and she had stopped breathing.” Found by a friend, Marilyn was taken to a hospital in San Diego, where she had been living and working as a grants administrator for the University of California, San Diego. She was comatose for three days. The accident happened on Dec. 31, 1999.

According to April, Marilyn had suffered an anoxic brain injury, meaning her oxygen-deprived brain damage was diffused, over almost her entire brain, and not limited to a particular area. Early on, as her brain tried to heal, it would seize, and she was put on anti-seizure medication. Rehabilitation and occupational therapy would help — but what had happened to Marilyn meant that for April, her three other healthy siblings and their parents, Marilyn could no longer care independently for herself.

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For Oshita, 68, his journey as a caregiver was more recent, and the duration was comparatively short, the last 28 days of the life of his late wife, Robyn, who died on Oct. 23, 2017, at 66. The cause was AML or acute myeloid leukemia, a blood and bone marrow cancer that can develop and spread fast — alarmingly fast. The time from diagnosis to death was, Gregg recalled, about two-and-a-half months.

The Oshita family from years ago: Kimberly, Gregg, Robyn and Michael. (Photo: Courtesy of Gregg Oshita)

Earlier that year, though, Robyn and Gregg would take three memorable trips: in March to Ecuador, where their daughter, Kimberly, was teaching; then at the end of April, Japan for 10 days, a gift from Kimberly and son, Michael; and finally, in July, to California: Napa Valley, Monterey, Carmel and San Francisco.

To prepare, they began an exercise program. “Robyn could out exercise me easily. I mean, she would do the elliptical, and then she’d go on the stair stepper — she was eventually climbing up 13-15 flights of stairs,” Oshita said. “She was in great health.”

It was in Carmel and San Francisco when Robyn told Gregg that she couldn’t go up the hills like usual. Gregg also noticed that she bruised easily, getting black and blue marks all over, just from bumping into something.

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After about a year in a rehab hospital in San Diego, the Inagaki family brought Marilyn to Chicago. “My mom tried to take care of her in the beginning for a while, by herself, without caregivers,” April Inagaki said, with everyone pitching in.

When she proved to be beyond her mother’s ability, Marilyn went to her father’s place (the parents were divorced by this time), with part-time caregivers and the healthy siblings again pitching in. Because of her brain injury, though, Marilyn was prone to unpredictable mood swings.

“It was too much, even with a part-time caregiver, to handle, and we couldn’t afford a full, 24-hour caregiver.” At the time, Marilyn was only in her 30s.

The Inagaki family was advised that Marilyn would be better off in a nursing home and that she should be put on Medicaid to pay for it.

“That was an arduous process, as anyone who has applied for public money must know,” April said, dealing with detailed paperwork regarding health insurance and assets, like Marilyn’s San Diego condo, which would have to be sold. “My father was an insurance agent, and one of my older brothers was an underwriter, so they were familiar with contracts and that really helped — but it was hard, even for them, to deal with that paperwork.”

When Marilyn’s Medicaid came up for review years later and they had to reapply, April said this time she hired an attorney. While not inexpensive, the process went much more smoothly.

Although their mother is still alive, but with their father having passed away, April has assumed the duties of handling Marilyn’s affairs and keeping track of her paperwork.

According to April, the biggest issues facing her younger sister, now 56, are short-term memory loss, poor decision-making abilities and impulsivity issues.

“That part of her brain that controls inhibition and impulsivity were damaged. But she is ambulatory, she can walk, although she’s weak,” April said, noting that she uses a cane and sometimes a walker. “She does require a lot of supervision.”

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Concerned that something was not right with Robyn, the Oshitas visited a cardiologist upon their return home, and the doctor ordered a complete blood test, which resulted in the first red flag: a platelet count of 10,000.

Upon being told this, Gregg said he thought that sounded like a big number. Then he was told that in a healthy individual, the platelet count varies from 150,000-450,000. “That was when we knew something was wrong,” he said.

Then came the news from a biopsy that what Robyn had was myelodysplastic syndromes (MDS), a bone-marrow disease. Another specialist would tell them that Robyn would need a bone-marrow transplant, for which a matching donor would be needed. “As it turned out, two people were found who were a good bone-marrow match for Robyn, so that made us feel better,” Gregg said.

Then came news that MDS that can convert into AML within seven months if left untreated. “Unfortunately, it converted in two months,” Gregg said, despite beginning chemotherapy immediately. He also said, “We were told that it’s worse when someone goes from MDS to AML than if they have AML alone.”

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While Marilyn’s family did obtain a power of attorney for health-care and financial decisions, which April is in charge of, she is not her sister’s guardian. “She’s her own person,” said April.

Looking back over the last nearly 20 years, April says that Marilyn’s accident, which left her permanently disabled, had a “huge impact” on the family.

“The relationship between my brothers and sisters and I — we weren’t especially close — but when this happened, we just all closed ranks to try and help each other out,” April said. “A lot of the burden has fallen on me because I guess that’s the kind of person I am. When there’s something that needs to be done, I just step up and do it. Being the big sister of the family, too, that’s kind of the role I’ve always played.”

While admitting that life for everyone has become easier since Marilyn has moved to a facility, April notes that Marilyn’s situation is never completely out of her thoughts. “I think about Marilyn all the time,” she said. “Any kind of heath issues that she’s had over the years and will have as she gets older.”

April also says that as a family, “we became sad,” even though she’s still with us. “A pastor at our church said you have to grieve about Marilyn because she’s not the person that she was. The Marilyn that we once knew is gone.”

April credits her church for serving as an additional community and support group. “We’ll always be grateful to them,” she said. She also credits social workers and government agencies, as well as aunts and uncles, as being a great source of help and support.

In addition, April also took the advice of close friends who could tell that the situation was wearing her out and suggested she see a professional with whom to talk.

“I did go to see a psychologist, and I continue to,” she said. “He brings perspective to me. We go for a physical [examination] for our bodies, so I go once a year for a mental tune up. … It really does help to have a great mental health professional that you can turn to, as well.”

“When you’re caring for someone, you’re prone to depression and becoming tired. I never see taking care of Marilyn — and my parents — as a burden. It’s part of the Japanese oya-koko (filial piety),” she said. “It’s just something we do.”

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Asked whether he ever had a “getting your affairs in order” conversation in case she didn’t beat the cancer, Gregg’s answer was yes and no.

“We never had a conversation, ‘Hey, I might be dying,’ or anything else like that,” he said. “In fact, I kept trying to keep myself positive and Robyn positive by saying, ‘We’re battling this together, and we’re going to beat it.’

“On the other hand, we did contact an attorney to put a trust together,” Gregg continued. “But that was something that we had thought about for a while, in the event that something happened to us.” They did draw up a living will, a trust and a power of attorney.

“I remember a week and a half to two weeks before Robyn passed away, she woke me up and she said, ‘Gregg, Gregg.’ I said, ‘Honey, what’s up?’ She said, ‘It’s been a great ride.’ ”

Understandably, Gregg says he doesn’t want to dwell on Robyn’s final days as her health so rapidly declined, from being able to walk to becoming bedridden and living with pain, and how he cared for her in what would be her final days, doing anything he could to help her and comfort her.

Robyn Anne Oshita (Photo: Courtesy Gregg Oshita)

He prefers, rather, to keep alive his memories of Robyn when she was vital and in good health — and that is why Gregg has created a foundation to keep her memory alive and help others.

“We started the Gregg and Robyn Oshita Foundation. The reason it has both our names [is because] I wanted my name, my life, my future tied to Robyn to keep her memory alive. After Robyn passed, my kids (Michael and Kimberly) and I talked, and we said we wanted to honor mom and keep her memory alive.

“We started the foundation, essentially, to help other families, individuals, who are battling AML or MDS, so they don’t have to go through the pain and heartache of what we did,” he said. The foundation’s activities include sponsoring blood and platelet drives, induced by the memory of how Robyn needed transfusions twice a week.

“We had to worry every day whether or not we were going to find platelets,” Gregg said. “I can’t tell you how stressful that is because at one point, her platelets dropped to 5,000.”

Fast-forwarding to now, Gregg said, “We had our inaugural event in Chicago, and it was a blood drive in Robyn’s honor — 27 people donated blood in about four hours.” He noted that they also signed up eight people to be bone-marrow transplant donors through the organization Be the Match.

“Our goal is to save one life this year,” he said. “If we can save one life, that will be a great start to our foundation.”

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If there is, as the saying goes, a silver lining to every dark cloud, what was the silver lining for the Oshitas and the Inagakis? Wouldn’t they rather have what happened not to have happened, what with Marilyn Inagaki living on in a disabled state, while Robyn Oshita living on only in memory? Of course. But it didn’t turn out that way. “Shō ga nai,” April said.

For the Inagaki family, Marilyn’s situation brought the other siblings together in a way that might not have happened otherwise. For the Oshita family, remembering Robyn by finding a way to help others was a way of turning a negative into a positive. The result: the Gregg and Robyn Oshita Foundation, the website for which is thegrofoundation.org/, with its next platelet/blood drive set for the week of June 2–9 in Cincinnati, in partnership with the Hoxworth Blood Center, with Gregg requesting that donors use either the PR number of PR-1465 or Robyn’s name. Call (513) 451-0910 for details or visit hoxworth.org/.

For April, Marilyn’s circumstances made them realize that despite the hardships it caused, there were others they met through support groups whose situations were far worse.

“I think our culture was very helpful in getting our family through it,” April mused. “There was no question we were going to do what we need to do to take care of her.”

*April Inagaki is a pseudonym.

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