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Young carer of father with dementia reflects on experience, need to open up (Pt. 2)

Naoya Ohashi is seen in a park where he used to play with his father when he was young. (Mainichi/Takehiko Onishi)

TOKYO -- Naoya Ohashi, 27, who had taken on the task of caring for his father with early-onset dementia since he was a middle school student, applied to just one university to minimize his family's burden of paying for his exam fees. However, the university did not accept him, and he wound up spending an extended period preparing for subsequent exams as he did not leave himself any backup options. As he could not afford to attend preparatory school, he studied on his own at home.

    Around this time, his father's condition also worsened. He had trouble verbalizing his thoughts, and his speech became incoherent. He also began to leave the kettle on the stove, and it became difficult for him to cook for himself. As Ohashi's mother was out at work and Ohashi was the only other person at home, he became responsible for preparing meals, offering bathing assistance, and other tasks, on the three days of the week that his father did not use day care services. Ohashi assumed an increased nursing load, compared to the care he had previously provided.

    As his friends began to pursue academics, he fell behind as he cared for his father at home by himself. Ohashi began to feel as if he was being left behind, and felt even more lonely. By offering thorough care and keeping a close eye on his father, he was able to feel relief, but could not escape the loneliness.

    After two additional years of studying, Ohashi was accepted into a correspondence course for the university of his choice. However, there were times when his father, unable to wait for day care staff to pick him up, went outside on his own, and was later found on the verge of collapsing from dehydration. Although Ohashi's family signed him up for more day care facilities, matters got out of hand, and he was admitted to the hospital in September 2016. Ohashi's father passed away two years later in November at the age of 59. It was about 10 years since he had been told he may not have long to live.

    Ohashi encountered the term "young carer" in June 2017 at age 22. He attended a symposium in Tokyo for young people with parents who have young-onset dementia, after learning about it from his mother. He learned for the first time that the care he had been offering since his junior high days made him fall under the category of "young carers." When he introduced himself to a group of about 10 people, many of them sympathized with his experiences, which nobody had bothered to take note of until then.

    "There are people who will pay attention to me in such an earnest way," thought Ohashi, feeling joy over his companions warmly receiving and listening to his story. It was the first time he felt understood. Realizing that he was not alone, his feelings of loneliness also diminished. Following this, Ohashi has been invited to symposiums, forums and other occasions to share his experiences with others. He used money earned from part-time work to supplement household finances, though he had originally set it aside to cover tuition, and has thus been unable to acquire certain credits; he is now in his seventh year of university.

    Ohashi holds pride in his past as a young carer, saying, "I have no regrets about looking after my father. I was able to carry out my duty." At the same time, he admits that "as a result, I was late to pursue my future path, and fell behind my classmates. Though it's something that couldn't be helped, I do wish I could have gone out into society earlier, and I'm left with a bit of bitterness over not having been able to do what I wanted to do due to a lack of financial means." Ohashi feels that people need to be understanding of families with young carers, and that these households deserve support meeting their needs, as well as financial and other forms of assistance.

    When Ohashi's father developed his condition, there was not enough awareness about or consideration for young-onset dementia itself, let alone for the people who supported these individuals, like him. Such caregivers are finally being given the recognition they deserve. "Thanks to the spread of the word 'young carer,' society has become unable to turn a blind eye," said Ohashi.

    He recalls his high school years when his situation was dismissed as family issues that were unrelated to his studies. Had there been more awareness of the worries and troubles unique to young carers, the school would surely have taken a different approach.

    In May, the Japanese government issued a proposal of support measures, including pushing forward the arrangement of online gatherings for young carers, as well as consultation systems using social media. Ohashi wishes that children going through similar experiences will not become isolated as he once was. If the government's support measures are carried out, creating an environment where it is easier to speak out, children will be able to make their way toward a better future.

    - Naoya Ohashi's message to young carers:

    "Please don't carry all the weight alone. There is always someone who will lend you a hand. If you're having a hard time, the family members who receive your care will also be sad. So let's try confiding in others, to spend time with family without any regrets."

    We would like to hear your views. Please contact the young carers reporting group by email at tokuhou@mainichi.co.jp or via our Twitter account @youngcarers_mai

    (Japanese original by Kentaro Mikami, Digital News Center)

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