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Japan man recalls crushing burden of 7 years caring for grandma since his teens

A page from a care diary kept by a Sendai man while he nursed his grandmother for seven years starting in his mid-teens. (Mainichi, image partially modified)

"It was impossible to keep going to school and provide care at the same time."

So said one 31-year-old man in Sendai, northeastern Japan, who spent seven years from junior high school to age 23 caring for his grandmother, who was stricken with increasingly severe dementia. The only child of a single-parent household, he took on the nursing role as his mother had to work. However, as his grandmother's condition worsened, he had to make a choice: destroy his own health, or drop out of school. He chose the latter.

The man was a teenaged "young carer," of whom there were some 37,100 between the ages of 15 and 19 across Japan in 2017, according to a recent statistical analysis commissioned by the Mainichi Shimbun.

The grandmother's dementia had for some time manifested only as occasional forgetfulness, but she took a sharp turn for the worse when the man was a junior high student.

By the time he had entered high school, she was having delusions that people were stealing her money and badmouthing her behind her back. From 9 p.m. to 2 a.m., she would go into rages and insist, "I don't want to go to the day center!" where she spent her days. Most nights, he did not get to bed until around three in the morning. But even then, his grandmother needed help going to the toilet about every two hours.

In the mornings, exhausted, he saw her off to the day center before heading to school. This was his life, day in, day out. But conditions worsened when his grandmother began to wander, meaning he could not take his eyes off her. Meanwhile, he made her a special breakfast and supper every day, preparing dishes that would not get caught in her throat.

Getting through each day at school became a struggle. There is a broad risk that young carers' academics will suffer due to the extreme load of both nursing a loved-one and trying to keep up with their studies. People in this situation also find it hard to communicate their problems, and this can lead to social isolation.

The Sendai man's experience followed this course. He would sit in class feeling zoned out. He felt hot and couldn't stop nodding off.

"When I think of it now, it was like being hung over," he said. He even had sudden bouts of hearing loss. He found it hard to study at home, and his test grades plummeted, from being ranked in the 50-59 range among the 180 students in his grade in his first year, to 160-169 in his second year.

His grandmother would return from the day center at about 4 p.m., so he rushed home every day to meet her. He had been in the kyudo Japanese archery club at school, but he often had to miss practice. He used his mobile phone to keep up with the goings-on in his class, but eventually he found himself avoiding spending time with his school mates.

Both he and his mother were exhausted. They looked into putting his grandmother into a nursing home, but gave up when the facility care manager told them it would be a three-year wait. The bike ride to school was only 20 minutes, but to him it was a "blissful time." He would often stop for a few minutes on the way and just look at the neighborhood or the sky. He had told his teachers about his home situation, but still he was given a warning about being late.

Young carers can have difficulty moving on to the next level of education or finding a job, but there is very little official help for them. According to a source close to Carers Japan, a Tokyo-based support organization, "This problem tends to be seen as a lower priority than bullying or abuse."

The Sendai man reached his limit in his second year of high school. He woke up one morning feeling extremely heavy, and he could not move. He could not summon the will to do anything, and became unable to go to school. Staying home on leave from school and committing himself to the care of his grandmother actually eased his frustrations, as he was no longer comparing his friends' lives and his own. He intended to go back to school at some point, but his grandmother's condition got even worse. After a year, he threw away his uniform and everything else related to his high school.

His grandmother passed away in 2011 at age 91. In the days leading up to her death, she did not recognize her grandson.

"I suppose it was a parting with no goodbye," he said.

After she died, the man found it very hard to find a job. At interviews, he would be asked, "So why didn't you at least pick up some qualifications while you were caring for your grandmother?" He ended up bouncing from one irregular job to another, and now works the night shift at a convenience store and for a cleaning company.

He will never get the seven years he spent caring for his grandmother back, but he has no regrets or feelings of recrimination.

"My mother had to work, so my grandma took care of me when I was small. So it was my turn to look after her."

(Japanese original by Taiji Mukohata and Hiroyuki Tanaka, Special Reports Department)

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