A man in his 80s suffering mild dementia (the story is courtesy of Shukan Gendai magazine) is cared for by his wife, also in her 80s. She’s exhausted. Caregiving drains the prime of life, let alone the end of it.
The man is diagnosed with bowel cancer. The doctor suggests surgery, but the question arises: Can a body enfeebled by age and illness survive it? Maybe, maybe not. Left unattended, the cancer will at best cause acute discomfort. It’s up to the family, says the doctor. The wife favors the operation. A son, in his 60s, opposes it. He lives far away and, though sympathetic and concerned, is unable to be of much help on a day-to-day basis. The patient, who is able despite his dementia to communicate up to a point, remains silent, as if to say, “Whatever you decide.” His wife decides. The operation takes place. The patient dies.
Mother and son fall out. “You wanted the operation to kill him,” he says.
She is outraged: “How dare you say that to me! I, who cared for your father alone all those years while you did nothing!”
The story has no ending, this side of the grave. It will end with the lives of the protagonists.
A second story, narrated by Josei Jishin magazine in a report on an altogether new kind of homelessness, does have an ending — a not unhappy one.
Hiroaki Takano, 61, earned ¥12 million a year working for a leading department store, but had to quit when his father contracted throat cancer and needed his care. The father died, but then Takano’s mother, already infirm, began to need constant care. By the time she, too, died, Takano’s finances were depleted to the point where he was unable to pay rent. He was evicted. For a time (it’s not clear how long), “I was actually sleeping in the park,” he says.
A support group took up Takano’s case and helped him apply for social welfare. He lived on that for three years, and then the support group hired him as a telephone consultant, at nowhere near his former salary but at least he’s on his feet and helping people burdened with troubles he knows only too well.
Old age has many facets, and we’re learning more and more of them as Japan grows increasingly, unstoppably elderly. On the one hand, it’s marvelous to be living so long. For most of human history 50 was old age, if you beat the odds and survived that long. Death’s forced retreat, though partial, expands our horizons beyond anything our ancestors could have realistically imagined. It’s a triumph of medical science — again, partial, as the physical and mental infirmities that at their worst make a mockery of life remind us. Perhaps those infirmities, too, in time, will be overcome or pushed back. In the meantime, the financial burdens and anguishing moral dilemmas that caregivers face seem almost to overshadow the suffering of the infirm elderly.
Every year, government statistics show, 100,000 people, 80 percent of them women, quit jobs to nurse elderly relatives. Unemployed, they face spiraling costs. To make a house barrier free and fit it with the various special devices the infirm require costs, on average, ¥800,000, according to Josei Jishin. Then there are the day-to-day expenses that caregiving imposes: ¥79,000 a month, on average. An elderly person under nursing care survives an average four years, 11 months. Total: ¥5.46 million, roughly ¥1 million a year — a crushing burden when there’s no income, as Takano, whose salary had been 2½ times the national average, was neither the first nor last to learn.
There is more help available than many people realize, Josei Jishin points out. Caregiving is a community undertaking that many people ruin themselves shouldering single-handedly — some from pride in their independence, others from the perceived shame of being dependent, others still from ignorance as to what social services to apply for from what agency. It’s a labyrinth, but there is guidance and it can be negotiated. Still, a Mizuho Research study shows, 47.8 percent of caregivers consult no one, seek sympathy nowhere and struggle alone.
Working while caregiving seems impossible but is less so than it used to be as social services improve and employers, facing an increasingly acute labor shortage, grow more accommodating.
A 31-year-old physiotherapist Josei Jishin speaks to told her employer she was quitting to care for her mother, suffering from early-onset Alzheimer’s, and her father who’d had a stroke. “Not so fast,” her boss said. “Don’t commit yourself. Take temporary leave, see what you can arrange, we’ll keep your job open” — thanks to which she works now under a kind of flextime setup. It doesn’t make life easy, but it does make it possible.
Life’s severest trials, it’s often said, bring out the best in some, the worst in others. Enormous sacrifice is demanded of caregivers, who make it gracefully or grudgingly, according to their natures and circumstances. Confucian ethics enjoins reverence for the aged. Failing that, there is love. Failing that? Shukan Gendai relates this episode concerning a man in his 80s with lung cancer.
There are two choices: surgery or radiation. Radiation is more sophisticated, and more expensive. The family’s insurance didn’t cover it. Two sons favoring the operation, which the insurance did cover, were opposed by their mother, who wanted radiation regardless of the cost. The head doctor would not commit himself; it was a family decision, he said. The sons reminded their mother that the family’s savings were not bottomless, and as for them, they had children to educate. Don’t the children deserve priority? The mother had her own ideas. She sold the house, and radiation won the day.
The patient survived, which doesn’t close the case because he might have survived the surgery, too. The sons, meanwhile, Shukan Gendai hears from its hospital sources, were apparently so disgruntled at the reduced inheritance that they stopped visiting their convalescing father. That makes them sound grasping and petty. That’s how people sound when their side of the story goes unheard.
Michael Hoffman is the author of “In the Land of the Kami: A Journey into the Hearts of Japan” and “Other Worlds.”