Laurel Kamada had a thriving career at a university in Tohoku before her life was turned upside-down one day in 2013.
The American-born lecturer suffered a massive hemorrhagic stroke that affected the left side of her body and as a result she can now only walk very short distances using an ankle-foot orthosis (AFO) brace and cane. The rest of the time, she gets around by using a wheelchair.
The university she works for was refurbished to be wheelchair-friendly, but her doctor recommended that she not return to her workplace. That left Kamada without a job and dependent on her Japanese husband for care.
A sudden debilitating illness or accident can hit like a bolt from the blue, and they’re rare enough that not many foreign nationals here prepare for the situation. It’s something worth thinking about, however. Facing the kind of situation Kamada did is difficult enough in your home country, but cultural and linguistic obstacles can make a difficult set of circumstances even worse.
“What really annoys me with institutionalized caregiving in Japan is the idea that ‘one size fits all.’ When I am sent out to my day service which I otherwise enjoy, I dislike being treated as every other Japanese woman as I do not identify in that way at all. I wish they would treat us all as individuals.”
She attends a day care service three days a week, which includes a bath and rehabilitation workouts. Japanese home helpers, whom she says she “loves dearly,” come most weekdays to help Kamada prepare evening meals and such.
Kamada says she’s grateful for the help, and notes spots for improvement in the way Japan caters to people in the same situation as she is (she says heavily reduced taxi fares for special wheelchair-accessible taxis would be welcome for a start). She also wishes there was some relief for her husband, who “gets easily burned out” from his constant obligations as a caregiver.
However, Kamada has also run into cultural issues surrounding caregiving in Japan, including a reluctance to think outside the box. She thinks, for example, that the doctor who blocked her return to work may have had the best of intentions when concluding she wouldn’t be up to the task physically — and perhaps he also meant to take the decision about her return out of the hands of the university — but from Kamada’s standpoint, the doctor went over her head without considering her ideas on how she could attempt to make her situation work.
The doctor also explained most of his decisions to Kamada’s husband and not to her, even though she understands Japanese. This way of communication, using her husband as a messenger, is a constant source of frustration for Kamada. After holding a position of respect for so long, she says being deprived of her own agency has felt belittling.
“I want to be taken for who I am and not crammed into a stereotypical box,” she says. “This occurs among doctors and day service workers in Japan, where they mostly deal with the elderly suffering from dementia. There’s a much smaller percentage of us who are there due to physical impairments.”
Fellow American Kristy’s current physical situation is even more fragile. She has been practically bedridden since 2006, following brain surgery after a chronic attack of meningitis. (As communication is hard for Kristy these days, her friend Sheila assisted in answering questions. Both women asked for their family names not be shared.)
“My husband is my main caregiver,” Kristy says, adding that he is “a middle-aged Japanese man who avoids talking to me.
“I also receive care daily from a team of home helper assistants. I wish I had more helpers who could stay longer with me. They are nice, but so busy!
Sheila, who no longer lives close enough to visit her friend regularly, adds that Kristy’s husband is just a much a victim of circumstance as his wife.
A gregarious woman who used to enjoy entertaining, Kristy has few visitors these days and contact from her family in the United States has decreased over time. According to Sheila, the biggest hurdle her friend faces is isolation, compounded by the fact that she didn’t speak much Japanese even before her illness.
“Kristy is nothing if but a survivor,” Sheila says. “But I feel her quality of life could be greatly improved by English voice recognition technology and more people to interact with at her level.”
A caregiver’s role
In a reversal of roles, Alison is the primary caregiver for her Japanese husband. After being paralyzed in a car accident, he was hospitalized for more than a year before moving back home. As Alison works full-time, nurses and helpers come to the house in her absence, but she is responsible for his needs before and after her work and on weekends.
Although grateful for the assistance, Alison, who has also asked that we not share her real name, finds some things lacking in the Japanese care system.
“First, proper counseling doesn’t seem to be available for either the person who requires care or the caregiver,” she says. “The lack of extra assistance is also a huge challenge — it is naturally assumed that family members will do all of the caregiving when not working.”
For anyone involved in a similar situation, Alison believes it is imperative to build a support system and practice self-care — something she learned though experience.
“Taking care of yourself, both physically and mentally, is essential for maintaining self-esteem,” she says. “In hindsight, I should have been much more assertive about my own limitations. Because I felt bad about what had happened to him, I silently endured my husband’s anger and criticism, and consequently became very bitter and unhappy with my situation.”
Our turn to care
American Judith Hayauchi became her family’s main breadwinner after her husband was diagnosed two years ago with primary central nervous system lymphoma, a rare cancer of the lymphatic system.
Following nine months of hospitalization, chemotherapy and radiation, her husband’s condition has improved to the point where he has been able to take on some work again, but with reduced stamina. The couple, who have two children in their 20s, have gradually been adjusting to their “new normal.”
Hayauchi’s husband has received a Level 5 disability certificate (Level 1 being the highest) but is only eligible for very minor financial support, and Judith has steadily taken on more work as a result.
“This means it is extremely difficult for me to meet with his doctor now. I wish the hospital had a consulting time, and that such a service had flexible hours,” she says.
“Navigating all the departments at the city office is also a challenge,” she adds. “It would be a dream come true to have consulting staff there that could help people take care of all the necessary paperwork and so on, at one counter.”
While the physical demands of her caregiving role have lessened significantly, Hayauchi notes that the emotional demands are an ongoing challenge.
“He’s grieving the self he lost, but doesn’t think about it in those terms,” she says. “Or if he does, it is very private. My role now is to provide financially, be a sympathetic ear and make sure he remembers the things he needs to do.”
Since her husband’s condition is rare, there aren’t many support services out there, but she says a caring network of Japanese and non-Japanese friends, both at the local level and through an online community, have helped her make it through the tough times.
“We are in the recovery/recovered period, embracing ‘normal’ life,” she says. “That initial sprint is over. Now it’s more like a long-distance race. There are still struggles and, post-crisis, there is often less surrounding support.”
Hayauchi’s main advice? “Be aware and proactive in caring for both yourself and your loved one.”
In Harry’s case, the family member in need of care was his Japanese mother-in-law who was diagnosed with dementia in her mid-70s.
“We’ve had the best of her for over 25 years, with built-in help for baby-sitting and chores as our kids grew up, so now it’s our turn,” Harry, who asked that we not reveal his real name, says of his reason for becoming a caregiver.
Harry runs his own business from home, while his wife is a full-time company employee.
“It made sense for me to assume the caregiver role during the day,” he says. “Mother goes to ‘granny day care’ twice a week and is home with me on the other days. I also take her to medical appointments or out and about with me when I run errands.”
Although Harry understands Japanese quite well, he says that much of his mother-in-law’s chatting goes over his head these days.
“But generally she’s happy and we get along well,” he says. “I’ve learned to adapt.”
As a matter of fact, Harry considers himself to be a more patient caregiver than his wife, who finds it frustrating and upsetting to watch her mother’s capacities diminishing.
Trips away with his wife have become a thing of the past since his mother-in-law’s dementia worsened three years ago. Harry has only been back to see his own parents once in that time, and he had to go alone.
“There certainly has been a trade-off in caring for her at home,” he says. “We take it one day at a time.”
It’s never too early to prepare for the worst
According to Vickie Skorji, Lifeline director at TELL Japan, caregivers are particularly vulnerable to stress because of the demands placed upon them by their roles.
“The greater the physical and emotional demands of the caring role, the greater the stressors,” Skorji says.
What follows is a checklist that caregivers might find useful in managing their new responsibilities:
Do you know what services are available?
Have you received information or education on how to care for your relative or loved one and about their condition? If not, who can you reach out to?
Are there any support groups?
Do you need any home help or modifications to your home or apartment?
Do you know who to contact or need assistance to access support?
Do you need transportation support and know who to reach out to?
Do you need respite, or day care? Do you know who to reach out to?
Do you need an interpreter?
Do you have a list of emergency numbers?
While we couldn’t find specific English-language groups specifically for Japan-based caregivers, Skorji suggests:
Himawari: For medical translation support in multiple languages. (www.himawari.metro.tokyo.jp/qq13/qqport/tomintop)
FRAC: The Foreign Residency Advisory Center provides consultation and counseling services for foreigners in Tokyo regarding customs, traffic accidents, family concerns or personal urgent enquiries. (www.metro.tokyo.jp/english/guide/guide01.html)
AMDA: The Association of Medical Doctors Asia can help with medical information and translations. (www.en.amda.or.jp)
Tokyo Parent-Child Learning Group: A group for parents of children who have special needs. (TokyoParentChildLearningGroup@gmail.com)
TELL Lifeline: Operators can assist you finding resources to help deal with your own needs and stressors. Call 03-5774-0992 seven days a week from 9 a.m. to 11 p.m., or chat Friday, Saturday or Sunday from 10:30 p.m. to 2 a.m.