Isao Hiraba (from Hokuryu Town, Hokkaido): A Life with Juvenile Dementia

Monday, July 6, 2020

On Tuesday, June 30, Isao Hoshiba (81), who served as a member of the Hokuryu-cho Regional Development Cooperation Volunteers, completed his three-year assignment. We interviewed him about his activities to date, including the Young Adult Dementia Family Association.

Table of Contents

Local revitalization activities and national activities

Various activities for community revitalization

From 2017 to 2020, Isao Hiraiba worked hard for three years as a community promoter for dementia in Hokuryu Town, a director of the NPO Akarui Nouhou, support activities for the Community Support Center, and employment support activities for people with disabilities.

After his term as a Regional Development Cooperation Volunteer ended in July 2020, he has continued to work as a volunteer as a coordinator of life support in Hokuryu Town, a board member of the NPO Akarui Nouhou, a support activity for the Community Support Center, and an employment support activity for people with disabilities.

Nationwide activities related to juvenile dementia

In addition, he continues to serve concurrently in a number of positions in Tokyo. He is also an advisor to the Saisei no Kai (Association of Families with Young Dementia, Hoshi-no-Kai; Headquarters: Tokyo), a director of the NPO Support Center for Young Dementia (Headquarters: Tokyo), a director of the NPO Iki Iki Fukushi Network Center (Iki Iki*gakudai; Headquarters: Tokyo), and others. He has also served as a lecturer and traveled throughout Japan.

*"Iki Iki* Gakudai" is the nation's first support facility specializing in juvenile dementia and higher brain dysfunction, operated by the NPO Iki Iki Welfare Network Center. It provides specialized programs suited to young people by staff specializing in cognitive rehabilitation.

The Life of Isao Hiraba

Mr. Isao Hiraba was first introduced to the Family Association for Young Adults with Dementia when his wife, Yoshiko, was diagnosed with Pigg's Disease at the age of 60. In addition, he has been involved in various activities as a board member of various associations in Tokyo, and has also been involved in the acceptance of people with juvenile dementia and their families to move to Hokuryu Town and in employment support activities.

干場功さん(81歳)
Isao HANBA (81 years old)

Boyhood and adolescence

Isao Hiraba, born in 1939 (Showa 14), is 81 years old. Born in Hokuryu-cho, attended Manryu Elementary School, Hokuryu Junior High School, and Fukagawa Higashi High School. During his high school years, he lived in a dormitory in Fukagawa City.

My parents are tofu makers.

He grew up as the fourth son of nine siblings (six boys and three girls) with his father, Rinzo Hiraba, and mother, Matsue. His parents run a tofu shop in Hokuryu Town, which also has a Hokkai Times sales office. His father worked for the Japanese National Railways (in charge of maintaining the railroad tracks), and then engaged in work related to the charcoal bus industry. Mr. HAYABA speaks of his father's greatness: "Life was tough, but from an early age, all of my siblings could not remember being scolded by their parents.

elementary, middle and high school days

I delivered newspapers for six years in elementary school and was on the basketball team in middle school. In high school, I enjoyed skating at a nearby roller skating rink.

After graduating from high school, he planned to enroll in the Japan National Railways Technical College in Ikebukuro, Tokyo, but before his high school graduation ceremony, he suffered from an appendectomy and underwent surgery. He was unable to attend the graduation ceremony, and due to various other circumstances, he had to give up his plans to enter the school.

The period of kimono wholesaler (Tokyo)

apprenticeship at a kimono wholesaler

In 1957, at the age of 18, he moved to Tokyo. A friend of my brother's father ran a kimono wholesaler in Tokyo, and through his introduction, I became a live-in apprentice at Ishikawa Shoten, a kimono wholesaler near Nihonbashi Mitsukoshi in Nihonbashi Kobunacho, Tokyo. Unfortunately, the company went bankrupt within a year. He returned to his hometown for a few days, but soon returned to Tokyo.

His father had always told him, "You have to be patient and work for three days, three months, and three years," and he decided to follow his father's advice to the letter and return to Tokyo to continue working as a kimono wholesaler.

Ten years at a kimono wholesaler

The company changed from a joint-stock company to a limited liability company, and the number of employees was reduced to 10, but the company survived. I was able to learn the business quickly and was loved by my customers for 10 years. Thanks to this, I was able to learn the business quickly and was loved by customers for 10 years.

Married to Biko

In 1960, at the age of 21, he married Miko, an older colleague who worked at the same place. They started their newlywed life together in a 6-tatami mat room in an apartment in Tsurumi City owned by a client who loved them like family. In 1962, their first daughter was born, and in 1967, their second daughter was born.

若い頃のご夫妻
Mr. and Mrs. Hara when they were young (photo courtesy of Isao Hara).

懐かしいお二人の思い出
Memories of the two of you from long ago

お孫さんご家族と一緒に!
With his grandchildren and their families! (Photo courtesy of Isao Haniba)

Established Asahi San-Ei Co.

In 1967, at the age of 28, he became independent, and in 1968, he established Asahi San-ei Corporation (Asahigaoka, Nerima-ku, Tokyo) and became its president. He was able to obtain an unbeatable loan from a client, and in addition, he was allowed to use the first floor of the client's apartment for his office.

My residence at the time of independence was Toyoshikidai, a public housing complex in Kashiwa City, Chiba Prefecture. I commute from there to Nerima Ward.

Opened Kimono Gallery Yawara

In 1990, Kimono Gallery Yawara was established in Nerima Ward, Tokyo, in a rented three-story building, with the second floor used as the office of Asahi San-ei Corporation, the third floor as a wholesale store, and the first floor as an exchange space and Kimono Gallery Yawara. The company is given to another person and continues to operate today.

きものギャラリー和(やわら)
Kimono Gallery Yawara (Photo: Google Map)

Exhibition of Master Dyeing and Weaving Artists

In December 1996, the "Exhibition of Master Dyeing and Weaving Artists" was held at the Nerima Art Museum. Sixty works by master dyers and weavers were exhibited, including "Dawn" by Fukumi Shimura, a living national treasure. All of the exhibits were from the collection of Isao Hiraba.

色・織物の名工作品展
Exhibition of Master Craftsmen of Color and Textile

Encounter with Morita Therapy "As It Is

Isao Hiraba suffered from a stress-related nervous heart disease caused by overwork before he was in his 50s, and spent a year at a medical university hospital in Tokyo.

During this period, a friend recommended a book on natural therapy called Morita therapy "Living as it is," and when I practiced this therapy, my symptoms improved. After that, whenever I had sudden heart pain, I would repeat slow, deep breaths (abdominal breathing), and the pain would naturally fade and the symptoms would ease and calm down.

Morita therapy's "as-is" approach is to stop trying to eliminate anxiety and symptoms and to cultivate an attitude of letting things be as they are. The main goal of Morita therapy is to overcome neurosis (anxiety disorders) by fostering a mindset of "let it be. (Mental Health Okamoto Memorial Foundation)Quoted from the HP)

Tsuneo Okamoto, Vice President of Nichii Corporation, established the Mental Okamoto Memorial Foundation in 1988 (1988) as a public interest incorporated foundation and became its president, based on his experience of suffering from neurosis but overcoming it with Morita therapy.

Mr. Tsuneo Okamoto invested his private funds to establish a nationwide organization, the Discovery of Life Association. Mutual assistance activities related to mental health based on Morita psychotherapy theory are developing nationwide. (SeeClick here for reference page >>)

認知症ご家族と真摯に向き合う干場さん
Mr. HAYABA sincerely deals with families with dementia (photo courtesy of Mr. Isao HAYABA).

His wife, Miko, continued to work at the kimono wholesaler until she became ill in 1996.

Isao Hiraba, Staying Close to Young Adult Dementia

Wife, Miko, develops Pick's disease.

Born in Ryukazaki City, Ibaraki Prefecture in 1937.
In December 1996, at the age of 59, he developed a speech impediment.
In January 1997, a client pointed out his slurred speech at work, and he went to see a doctor. Thereafter, he visited the hospital once a week for speech rehabilitation until December 1999. He also visited other medical hospitals once a month.

'Three years before I was diagnosed with Pick's disease. I was constantly scolding my wife, 'Why can't you do this? I was constantly scolding her, and I am very sorry for what I did to her. This painful and painful experience has enabled me to be kind to the hearts of my clients in my subsequent activities," says Mr. Hayashiba.

At the time, we were interviewed by NHK about juvenile dementia, and the Asahi Shimbun newspaper wrote a one-week series of articles about the couple's caregiving at that time.

美子さんを介護する干場さん『女性セブン・平成17年8月』
Ms. Haya caring for Ms. Miko, "Josei Seven, August 2005.

In December 1999, he was diagnosed with Pick's disease. The frontal and temporal lobes of his brain atrophied, and he suffered from aphasia. The social worker recommended that he be transferred to a psychiatric-oriented hospital.

In February 2000, he collapsed on the street due to stiffness and was hospitalized the next day. After being discharged from the hospital, he looked for many residential facilities, but was turned down when he told them he had "Pick's disease." In May of the same year, he was finally admitted to Musashinoen, a health facility for the elderly (Saitama Prefecture).

Everyone at this facility has been really good to me. The days spent at Musashinoen were probably the best period of time for Miko," said Ms. Hiraba, who expressed her gratitude for the wonderful and sincere support of the staff at Musashinoen.

After spending three months at Musashinoen, he moved to Nerima Ward Oizumi Special Nursing Home in 2001. Thereafter, he was repeatedly admitted and discharged from the nursing home to the medical center several times.

手を取り合い美子さんを介護する干場さん
Mr. Haniwa takes Miko by the hand and cares for her (photo courtesy of Isao Haniwa).

お孫さんを抱っこして!
Holding his grandchildren! (Photo courtesy of Isao Haniba)

On December 28, 2006 (Heisei 18), Miko passed away peacefully and quietly in her sleep.

At the time, doctors were told that dementia was a disease that could only be understood by autopsy. Therefore, Mr. Hiraiba offered Miko's body (brain) as a donation to the medical center as a research subject. Since only the brain was removed, Miko returned home that evening with a calm and clean face.

Young Dementia Family Association, Hoshi-no-Kai (Association of Young Dementia Families)

Isao Hiraba came across the Saisei no Kai, a family association for young people with dementia, after his wife, Miko, suffered from Pick's disease.

When I attended the meeting, I could not stop crying because I knew I was not alone. I realized that meeting other families who had gone through the same thing as me opened my eyes wide. Thanks to this meeting, I had the opportunity to meet other families and share my thoughts and feelings with them, which was a great encouragement to me mentally," says Mr. Haniba.

若き頃の干場さん『クロワッサン・2004年3月』
The young Mr. HAYABA, "Croissant, March 2004".

The Saisei no Kai was established in September 2001 by Kazuo Miyanaga, director of the Gunma Center for Mental Health, as a family association for young people with dementia (at that time, a family association for young people with dementia). The word "rebirth" was changed to "saiboshi," meaning "rebirth," and the name "saiboshi no kai" is said to mean "a full star shining richly and colorfully.

In 2004 (Heisei 16), an office was opened in Aladdin with the cooperation of Fumiko Makino, President of NPO Caregiver Support Network Center Aladdin (Headquarters: Roppongi) and her staff. Various events were held on Sundays of odd-numbered months, including regular meetings, mini lectures, family social events, and drinking parties.
 

Appointed as representative of Saisei no Kai, a family association for young people with dementia

In January 2006, Mr. Isao Hiraba was appointed as the representative of the Saisei no Kai, a family association for young people with dementia. In addition to participating in various committees, he was entrusted with handling all media relations and responding to interviews.

Conversation with Ken Watanabe at the preview of the movie "Memories of Tomorrow

In May 2006, members of the Saisei no Kai were invited to a preview screening of the movie "Memories of Tomorrow," and a discussion with actor Ken Watanabe was televised. The meeting with actor Ken Watanabe was televised on TV. Subsequently, the film was covered by TV, newspapers, and magazines, and was widely reported in the mass media.

渡辺謙さんと家族会メンバーの方々とご一緒に!!!
With Ken Watanabe and members of the Family Association! (Photo courtesy of Isao Haniba)


Memories of Tomorrow (preview) - YouTube

 
In March 2006, he became a member of the Research Committee on the Actual Conditions of Juvenile Dementia and the Infrastructure for Dementia Response, Ministry of Health, Labour and Welfare (MHLW).
In 2008, he became a member of the Tokyo Metropolitan Council on Dementia Measures and Support Subcommittee on Juvenile Dementia.

NPO Young Dementia Support Center established.

In March 2007 (Heisei 19), he established the NPO Young Dementia Support Center. Appointed as Director. With a subsidy from the Ministry of Health, Labor and Welfare, added the function of a social participation support center and began activities in September of the same year.

National Association of Families with Young Adult Dementia

Family associations for juvenile dementia have been established nationwide: Suzaku no Kai (Nara City, Nara Prefecture), Aito (Art) no Kai (Osaka City, Osaka Prefecture), Hokkaido Himawari no Kai (Sapporo City, Hokkaido), Gunma Family Association for Young Dementia (Maebashi City, Gunma Prefecture), and Saisei no Kai (Shinjuku Ward, Tokyo).

Relocation of a family member with juvenile dementia from Tokyo to Hokuryu-cho

Encounter with Dr. Kumiko Utsumi, Sunagawa City Hospital

In 2004 (Heisei 16), an outpatient clinic specializing in memory loss was established, led by Dr. Kumiko Utsumi, in which the three departments of psychiatry, neurology, and neurosurgery of Sunagawa City Hospital collaborate in providing care.

【北竜町ポータル・特集記事】内海久美子先生
Dr. Kumiko Utsumi, Portal of Hokuryu-cho, featured article

Ms. Hiraiba first met Dr. Utsumi, a lecturer at a lecture meeting in Sapporo, together with Kazuo Miyanaga, chairman of the National Liaison Council of Families with Young Dementia and Supporters of Dementia. At the lecture, Dr. Takashi Asada (Professor Emeritus, University of Tsukuba. Dr. Takashi Asada, Professor Emeritus of Tsukuba University and a leading expert in dementia prevention and treatment, led a presentation on various surveys related to juvenile dementia. (SeeClick here to read the referenced article >>)

宮永和夫先生との講演会にて
At a lecture with Dr. Kazuo Miyanaga (photo courtesy of Isao Haya)

【北竜町ポータル・特集記事】講師を務める干場さん
Mr. Hiraba, a lecturer at the Hokuryu-cho Portal and Feature Article.

Encounter and Farewell to Shinji Nakamura

encounter

Mr. and Mrs. Nakamura were participating in a family association in Tokyo called "Saisei no Kai," and the representative of the family association at the time requested Mr. and Mrs. Nakamura to "somehow take care of Mr. and Mrs. Nakamura since they are in a difficult situation. After many conversations with Mr. and Mrs. Nakamura, we recommended that they move to Hokuryu Town in Hokkaido as a way to change their environment, and Mr. and Mrs. Nakamura decided to move there.

Moved to Hokuryu Town with family

In August 2007 (Heisei 19), Shinji Nakamura (then 58, born in Osaka), his wife Hiroko (then 45), and their family moved to Hokuryu-cho, Hokkaido.

【空知ひまわり・ブログ】空知ひまわり便り 会報第4号 平成21年7月発行
Sorachi Himawari Blog] Sorachi Himawari Bulletin No. 4, July 2009

Preparations for acceptance in Hokuryu Town took about a year. In November of the same year, the founding meeting of the Young Dementia Family Association Sorachi Himawari was held, and a family association for young people with dementia was established in Hokuryu Town.

After coming to Hokkaido, I received treatment from Dr. Utsumi at Sunagawa City Hospital and gradually reduced the amount of medication I had been given, eventually reducing it to zero. Her symptoms also gradually improved. Furthermore, thanks to the warm and devoted care of the members of the Sorachi Himawari Family Association for Young Dementia, the disease progressed "miraculously slowly," according to Dr. Utsumi.

Sorachi Himawari's main activities are support programs such as walking, table tennis, park golf, pottery, and hot spring bathing once or twice a week. Members took turns participating as supporters and spent time together with Mr. Shinji. These activities of Sorachi Himawari were posted daily on the blog for 9 years.

farewell

On November 13, 2016 (Heisei 28), Shinji Nakamura departed for heaven. 23 years ago, he was diagnosed with juvenile Alzheimer's disease and moved to Hokuryu Town, where he spent 9 miraculous years under the warm care of Sorachi Himawari members. I can still see Nobu-san's peaceful smile.

【空知ひまわり・ブログ】空知中村信治さん ご逝去
Sorachi Himawari Blog] Shinji Nakamura passed away.

How to be close to Isao Hiraba's juvenile dementia

Role of family associations, security and trust

What I emphasize when I consult with them is that I first of all accept the difficulties they are going through. Even if what they tell me is slightly different from what I have told them, I do not dismiss it out of hand, but rather accept that they are right, and then I give them various examples of what I have seen. This gives the family a sense of security and trust. It is difficult for the person receiving the consultation to be able to listen to the other person's story well and accept it once," says Mr. Haniba.

Individual and family care is 50% vs.

In the beginning, I focused on caring for the person with juvenile dementia. However, from conversations and words with various family members, I realized that care for the family was also important. Since then, the care for the patient and the family has changed to 50% to 50%," says Mr. HAYABA.

Problems faced by families with juvenile dementia

There is a mountain of problems that families with juvenile dementia face, such as notification methods, financial problems after the onset of the disease, employment problems for the patient, abuse problems caused by the increased burden on family members, medical problems, and caregiver fatigue.

Difficulty in Certifying Severe Disability

The most difficult problem is the mortgage payment. We have been trying to get mortgage payment exemptions approved in various ways, such as by using a special clause in life insurance for severe disability, but there are a lot of difficult issues to overcome," said Mr. Hiraba, describing the difficulties involved in getting juvenile dementia approved for severe disability.

Difficulties in Diagnosing Juvenile Dementia

Patients whose symptoms progress quickly die about 10 years after diagnosis. Patients with a slow progression of symptoms and patients with mixed mental illnesses, for example, each patient has different symptoms, making diagnosis difficult.

Furthermore, some workplaces may require leave of absence or retirement, and family disintegration due to reduced income may also occur. Seeking stability in their lives through environmental change and improvement, they proposed moving to Hokkaido. A community partnership activity was set in motion to grow with the involvement of local residents.

Employment support for people with juvenile dementia (Ministry of Health, Labour and Welfare)

Since the symptoms and progression of juvenile dementia vary from person to person, employment support programs are implemented through initiatives such as job descriptions, job reassignments, and auxiliary tasks according to the symptoms.

For young patients with families, the need for loans and living expenses exist, so if the patient stops working immediately after diagnosis and loses income, it will be difficult to support the family. Light duty job descriptions are required to meet the needs of those with dementia.

In addition, symptoms of dementia are accompanied by mental symptoms, so that even if a person seems to be able to do the work, when he or she tries it, he or she may not be able to keep it up, or may quit immediately. Even if they are able to understand the work, it is accompanied by behaviors such as momentary incomprehension, sudden emotional outbursts, anger, and work stoppages.

The adjustment to work is not judged by those around you as 'not being able to do it,' but it is important for those who support the individual to patiently 'wait' until he or she understands that he or she is 'not able to do it to a certain extent' through a variety of experiences." Mr. Hayaba spoke with a sincere smile.

About Mr. Dryba's daily health care

We asked Mr. Isao Hiraba about his daily health care activities, including exercise and hobbies. He enjoys park golf for exercise, and his hobbies include shigin (recitation of a Japanese poem) and kenbai (sword dance).

hygiene

Walking: 30 minutes every morning, followed by participation in radio calisthenics organized by the town of Hokuryu
Thermal therapy: Every time I go to Hokuryu Hot Springs, I take a hot shower with hot water on my knees, shoulders, waist, arms, and Achilles tendon, and finally apply cold water to tighten the skin.
Compound breathing: 10 minutes before bedtime, 10 minutes after waking up

Pillars of spiritual care and outlook on life

Practicing the Morita therapy "as it is" approach.
Don't deny the other person, but accept reality as it is. Then you will somehow see the merit of the other person's opinion. And when you discuss, never immediately draw a conclusion on the spot. If you do reach a conclusion, do so the next day. It is important to ponder carefully overnight.

Listen carefully to what people have to say, and acknowledge it first. Never deny the person's story, but suggest that there are many ways of thinking about and dealing with the problem. The attitude of a volunteer listener is very important. By listening carefully to what the other person has to say, the other person can have a sense of security that he or she has been acknowledged," said Mr. Hiraba, whose sincere thoughts are deeply felt.

若年性認知症家族会の人々と心寄り添う人生
A life close to the heart with people with juvenile dementia family associations

Drawing on his wife Miko's painful experience with juvenile dementia, Isao Hiraba has been sincerely and wholeheartedly working with the patient and his family for nearly 20 years.

We are here today in Hokuryu-cho, thanks to the wonderful relationship we had with Mr. Isao Hiraba at the Juvenile Dementia Family Association. Isao Hiraba is a very kind person,The man who saved our lives.I am so thankful for all of your support. Words cannot express how grateful I am. Thank you!

With endless love, gratitude and prayers for Isao Hiraba's great achievements and efforts.
 

Related Articles

Hokuryu Town Portal

Tuesday, January 24, 2023 On Saturday, January 21, at 11:00 a.m., Sorachi Himawari, a family group for young adults with dementia (Representative: Isao Hiraba), held a temporary meeting in 2023...

On July 22 (Sat), "Dementia Forum in Hokuryu" was held in Hokuryu Town as a project to commemorate the 10th anniversary of Sorachi Himawari, a family association for juvenile dementia...

Sunflower Village in Hokuryu-cho, Hokkaido, a superb view of Japan. A sightseeing spot in Hokkaido. Please come and see it. Rice sommelier raves about "Oborozuki...

We will bring you the "now" of this vibrant and shining town with a population of 2,100 and an aging population rate of 40%. The town of Hokuryu, where families are as bright and harmonious as sunflowers...

Enjoy! Happy Life for Senior Couples

On Saturday, April 10, 2010, I attended the April meeting of Sorachi Himawari, a young adult dementia family association in Hokuryu-cho, Hokkaido, Japan. ...

 

◇ Photography and Editing: Noboru Terauchi Reporting and Writing: Ikuko Terauchi

en_USEN