A dirge for young caregivers! Dreams interrupted by caring burdens Is sacrifice a necessary responsibility for young people?

On October 14, 2015, a man in Kyoto City caregiverThe aid group “TOMO (Friends)” (Note: “Tomo” is the Roman pinyin of the word “Friends” in Japanese, meaning “friends.”) The gathering was held in a coffee shop in the Nakagyo District of Kyoto City. In 2010, caregivers in Kyoto founded “TOMO” in order to provide a place for men in care to communicate and meet easily. Members meet once or twice a month at coffee shops etc.

30 years old Japan young caregiverhard work and trouble

On this day, about ten people attended the party. At this time, among most middle-aged and elderly participants, we saw a young man who appeared to be in his twenties. The young male left the party about thirty minutes into the meeting.

After the meeting, we asked one of the participants, “Is the young man who left midway a college student studying care issues or a researcher?”

“No, he’s a caregiver too. He’s taking care of my grandfather.”

“Then he’s too young.”

“They seem to be called ‘young caregivers’. It seems that care has little to do with age. Young people also have their own hardships and troubles.”

What kind of experience did the young people who came to participate in the gathering centered on middle-aged and elderly caregivers complain and communicate with each other? We want to hear his voice.

Five months later, on March 6, 2016, we interviewed Kenta Asada (30), a company employee in the Kamigyo Ward of Kyoto City. Kenta speaks modestly and politely, with decent words, and looks like a very ordinary young man. He was full of life and fresh, and it was impossible to imagine that he was being troubled by caregiving. Yet the first-hand experience he described was harrowing.

The story will start in the middle of the night on May 7, 2007.

“Hey! Someone help me!”

At first Kenta thought he was dreaming, but the familiar voice kept coming. So he got up and went into the corridor. The sound seemed to come from the grandfather’s room downstairs.

78-year-old grandfather suffers from dementia Symptoms suddenly worsened

Walking down the stairs, Kenta tremblingly opened the door of his grandfather’s room, only to see his 78-year-old grandfather Junyi (pseudonym) standing motionless holding a stick.

“There’s a bear. Look, it’s there. Can’t you see it?”

Seeing Junyi afraid of bears in the familiar room, he was so emotional that Kenta even doubted his own eyes.

“…The bear has escaped…” Kenta subconsciously blurted out, soothing Junichi’s emotions.

Later, Chunyi was diagnosed with dementia, but there were no troublesome symptoms at that time. Kenta, who was a fourth-year university student at the time, lived with Junichi, his mother, and two younger sisters. The mother is frail and the two younger sisters are also facing exam pressure. Since then, when my grandfather got up in the middle of the night, Kenta took care of him.

Kenta dreamed of becoming a scholar since he was a child. In the second year after Junichi’s illness, he entered the research institute to study Japanese history. After the new student life begins, Kenta’s heart is full of expectations. However, at that time, Chunyi’s symptoms suddenly worsened.

Chunichi would get up every night, sometimes he would go to Kenta’s room on the second floor, and sometimes he would make a gesture to go out. He also goes to the toilet frequently late at night, and needs to be accompanied by Kenta every time.

The reality of one night was as follows:

“I’m going to the company now.” Chunyi said, ready to go out.

“It’s already late today, let’s go tomorrow.” Kenta comforted, and Junichi went back to his room.

Kenta thought to himself, Junichi probably wouldn’t just go to bed obediently. As expected, after a while, Junichi came to Kenta’s room and said, “Although I don’t know your name, thank you very much for allowing me to live here.”

After that, Chunyi went back to his room to sleep, but then he woke up again. He came to Kenta’s room, and this time he roared involuntarily: “Who are you! Why did you come to my house without my permission?”

At night, Chunyi seemed to be possessed by some mysterious thing, and kept doing all kinds of weird behaviors until morning. Kenta didn’t know how many nights like this he had experienced.

“He doesn’t know who I am, and sometimes he calls me by my relative’s name. I can only follow his words and calm his emotions. There is no other way.”

Chunyi’s wanderings also became more frequent. Sometimes after going out for a while, he would return home as if nothing had happened.

In order to know Chunyi’s going out in time, Kenta installed a big bell on the entrance. When the door is opened, the bell will jingle, waking up Kenta who is sleeping, and he will immediately go downstairs to the entrance to check the situation.

“At that time, even though my grandfather fell asleep peacefully, I couldn’t fall asleep. The sound of the bell and the sound of my grandfather waking up kept ringing in my head.”

No one can put himself in his shoes and hear his dreams cut short by the burden of caring

Such a tiring nursing life has also had an impact on Kenta’s research life. Due to lack of sleep and fatigue, Kenta’s research has not progressed. Every day he would doze off in the research room where no one was there, and at the same time, because his research progress was behind others, he became more and more restless.

Sometimes he would complain about the fatigue of nursing care to fellow graduate students and friends, and the answers he got were similar.

“It’s not easy for you.”

“Why do you have to take care of my grandfather?”

Sometimes friends would invite Kenta to drink, but he was always uninterested, so he politely declined.

“Because my research is progressing slowly, my research partners have adjusted the order of publications to take care of me. But if I keep falling behind, people’s attitudes towards me will start to change. ‘Separate your studies from your personal affairs.’ Sometimes There will be discussions like this.”

When attending a high school reunion, some friends would report their current situation to everyone, saying, “I was scolded by my boss at the company.” Hearing this, Kenta couldn’t help but feel how happy he is to have such simple troubles. And his friends always said to him: “It’s hard to take care of life. Come on.” For such words of encouragement, he has nothing to say except a forced smile. No one can put himself in his place and listen to him and give pertinent advice.

After that, Kenta plans to drop out of school, and the professor even suspects that he has depression. Although it was possible to postpone the completion, at this time his enthusiasm for research was gone.

“If you continue like this, you will destroy yourself.” In 2011, Kenta gave up his dream of becoming a scholar and left the institute.

Are Young People’s Sacrifice in Caregiving a Necessary Responsibility?

Like Kenta, children or young people who start taking care of them at a young age are called “young caregivers” or “Young Carers”.

The number of elderly people who need care is increasing day by day, so a considerable number of young people share care, housework and other labor at home. The biggest distress for young caregivers is that they do not get the understanding of their peers and schools, and care work will also have an impact on school life and employment.

Young caregivers are said to be less able to focus on school because they are too busy caring for them, leading to lower grades. Sometimes it becomes difficult to communicate with others, and gradually loses friends. Bearing the cold gaze of their peers, they are heartbroken and helpless, gradually falling into loneliness, and even losing their future dreams and goals.

Since more than 20 years ago, the United Kingdom has defined caregivers under the age of 18 as young caregivers, and non-governmental organizations have provided assistance to them. Not only care, but children who have to share housework in poor families are also one of the aid targets, and the total number is estimated to reach more than 700,000.

In order to provide support and assistance to this group, all parties in the society have made various efforts, such as holding rallies, advocating to keep children away from care work, and mobilizing schools to take care of students with difficulties so that they can take care of family affairs and studies, etc. .

“Is it our responsibility for young people to make sacrifices in caring?”

On March 5, 2016, the day before our interview with Kenta, he was speaking with a microphone in his classroom at Okayama University (Okayama City).

Kenta was invited to be a lecturer in the caring symposium “When you become a “caregiver”──Can you take care of yourself, study and work?” hosted by the school. There were about 20 students present. Kenta told them about his personal experience, his troubles as a young caregiver, and his desire to be understood. He told us that this speech might provide a reference for the interview the next day, so we also attended the symposium to listen to his story with the students.

Taking life more seriously after living in care than before

After Kenta left the graduate school, he worked in a supermarket, but he wanted to engage in work related to nursing care, so he came to the current company. At the same time, in order to let more people know about the existence of young people who are troubled by caregiving, he began to give speeches.

Kenta continues to take care of Junichi, and his goal now is to become a social worker, obtain national qualifications, and provide professional assistance to people with disabilities.

Kenta said:

“As a young caregiver, the most painful thing is to destroy the relationship with friends and classmates because of care. However, there is also a good side. After experiencing care life, I will face life more seriously than before and work hard Have a good day.”

Dementia is a disease that can change the lives of patients and their families. Even an extremely ordinary young man like Kenta was suddenly affected by this disease from a certain day, and his peaceful life brought about great changes.

According to the Ministry of Health, Labor and Welfare, the number of dementia patients in Japan in 2012 was 4.62 million (estimated). By 2025, that number is expected to reach seven million, when one in five older adults will be affected by the disease.

Caregiving is age-neutral, yet society has yet to recognize this heavy reality.

Scroll to Top