TOKYO -- It is characteristic of those who become carers in their maturing teenage years to feel isolated and struggle alone, unable to fully grasp or verbalize the reality of the task they have devoted themselves to until they reach their adult years. One such carer is Yui Takahashi, 22, who has recently begun to actively speak out on various platforms about her experiences of caring for her mother, who has a brain disorder.
In a room at their home in the Kanto region in east Japan, Yui and her mother Junko, 51, played a quiz. The scene was filmed as part of a video uploaded onto a YouTube channel that Yui started, titled "Former young carer Tarobae and her mom's channel."
"What's the date today?"
"Um ... is it March ... 18?"
"That's right, amazing!"
Such exchanges could be heard in this seemingly typical scene between a mother and daughter. Junko, however, suffers from "higher brain dysfunction," which is characterized by memory loss and cognitive deficiencies. Yui aims to introduce the traits of this disorder, while also talking about her own past experience as a young carer -- defined in Japan as a child under 18 who takes care of a family member in need of support while taking on adult responsibilities like doing chores.
"This is not anything big. I'm just making good memories during the spring break," Yui says.
Yui is very active on social media. Her username, "Tarobae," come from the name of a pet dog she had in the past. On her Twitter account, where she tweets about daily life with her mother, she made a resolution for the new fiscal year saying, "I want to balance life as a working adult with the time I spend caring for my mother."
Many former young carers who have grown past their adolescent years want to remain anonymous due to fears of prejudice and of hurting their family members' feelings. Yui, on the other hand, shares her experiences without hiding her real name or face.
"If awareness of this existing group of people called young carers spreads, and a network of support is extended towards children who are struggling like I once was, then I will be able to feel that my experiences haven't gone to waste.
This state of mind, though, was far from easy to achieve -- it was only after years of effort and perseverance that she reached it.
Junko was in a traffic accident in her teenage years, which left her with brain damage responsible for her higher brain dysfunction. Yui's father, Hitoshi, 57, had also lost his left arm in an accident the year before Yui was born. Yui, their only child, remembers going grocery shopping to supermarkets in the neighborhood from as early as age 3.
When Yui was a child, Junko could not read her picture books due to memory problems, so Yui learned to read books on her own. Junko's cooking was also inconsistent, with food coming out unevenly cooked. A young Yui, who was disheartened after a dish of undercooked meats was served, took up the task of cooking in her grade school years. Looking back on her childhood, Yui comments, "I found myself being able to do all the chores that a mother would ordinarily do." Checking the refrigerator to throw away old ingredients and food Junko bought, as well as rewashing dishes with remaining unclean spots has also been a part of Yui's routine that continues even now.
By the time Yui was in middle school, Junko developed a habit of drinking alcohol from the evening, becoming well beyond tipsy when Yui came home from classes. Yui would often hear a large thud just as she started doing homework in her room. It was the sound of her mother falling down in a drunken state. Yui became worried and went to help her mother at times when there was a lot of noise. She would at times wonder why she was dedicating so much of her time to her mother when other kids her age were doing their homework or partaking in afterschool activities.
However, at that time, Yui tended to be withdrawn. Those around her said that she was being too slow or hesitant, and that they couldn't understand what she was trying to convey. Teachers would dismiss her, telling her that she seemed indifferent to her own problems.
When Yui entered high school, Junko began taking medication and recovered from her alcohol addiction after a two-year battle. Even so, Yui does not have many memories of being able to have fun and play like a typical girl her age. In retrospect, she regrets not being able to experience the same things that her classmates went through in her own teen years.
It was only recently, in fact, that Yui began to feel it was all OK to acknowledge herself as a "young carer." In September 2018, Junko was sent to the hospital in an ambulance after falling down the stairs at home. At the time, Yui was a third-year student at a medical welfare college. Thankfully, her mother did not have any serious injuries. Nonetheless, as she was moving Junko's room from the second floor to the first floor and putting a handrail on the stairs, it finally dawned on Yui that she was providing care for her mother.
Although Yui had heard the term "young carer" when she was younger, she never thought of associating herself with the label. She had a father who worked diligently and enjoyed tennis for the disabled even without a left arm. Keeping her mother company was also a natural part of Yui's daily life. Yui disliked the word "young carer," as it sounded condescending and made it seem like parents and family members were merely the subject of care.
At the same time, there was a conflicting side of Yui that wished to meet those in the same situation as her. Yui had a phase during high school where she would repeat the process of writing and then subsequently deleting entries for an anonymous online blog. In July 2018, Yui finally set out to attend a symposium for young carers in Tokyo, and was able to connect with young adults who had similar experiences.
"It's my mission to lean on the term 'young carer' to find others in the same situation," she resolved. Junko's stair accident came shortly afterward.
Yui started to acknowledge and accept herself as being a young carer, and in October 2018, despite remaining anonymous, she responded to an interview for the first time and was introduced on public broadcaster NHK's website delivering welfare-related information, along with a picture of her face. Although she was initially worried about her father's response, he later told her it was a good article, and she felt relieved. Yui went on to make an appearance in a news feature aired by broadcaster TBS in September 2019, revealing her real name this time. She also participates in activities held by a Tokyo-based organization called Carers Japan, and interacts with fellow former young carers on social media.
Yui laughs and says, "I get to speak openly about what I want to say now, which makes up for my lack of rebellion toward my parents in my teenage years."
When this reporter asked Junko what she likes about Yui, she answered, "I like the way she speaks her mind very clearly. She's assertive and frank."
The timid girl from the past is long gone.
Yui graduated from university this spring and has secured herself a job, but has been forced to stay at home amid concerns about the novel coronavirus. When she was hunting for jobs, she encountered many companies that did not envision scenarios where young workers had to balance work and care for a family member. Yui has yet to find a facility where Junko can feel safe and comfortable while Yui works during the day. Nonetheless, she plans to continue delivering content on her various platforms at her own pace, slowly yet steadily.
"I don't want to turn my days spent with my mom into a negative experience. I think all young carers must feel the same way," she said.
(Japanese original by Young Carers Reporting Group)