Sato (alias)

Age:

44 years old (As of November 2019 interview)

Year of birth:

1975

Place of residence:

Tokyo

Relatives living together:

Lives with husband and one child

Occupation:

Former secretary / part-time staff at an after-school day-care facility for children with disabilities, part-time staff at a day-care facility for people with dementia

Age of onset:

About 42 years old

Age of diagnosis:

43 years old

Diagnosis:

Alzheimer type

Using long-term care insurance:

Have not applied

Frequency of gatherings with other people with dementia:

Home-visit helper (once per week) and home-visit nursing (once per week)
Part-time work at day service
Making friends with people in similar situations on social networking sites and giving /receiving support

Past experiences

2017年(42)

I noticed that I was more often having trouble remembering people's names, leaving things behind, and not being able to remember things.
It became difficult to get written words into my head.

2018年(43)

I felt something was a little strange because I sometimes forgot that I had made appointments with gas or cable-TV inspectors altogether and also how I had made these appointments.

2018年(43)

End of June: I worked as a part-time staff at an after-school day-care facility twice a week.

2018年(43)

November: I watched the TV drama "Dairenai (Great Love)" and concerned about overlaps between what I was watching and myself.

2018年(43)

End of December: The TV drama ended. To get rid of my worries before the end of the year, I quite casually visited a specialist clinic with which my husband had a business relationship. I took a neuropsychological test and an MRI together.

Diagnosis

2019年(43)

January: Test results came in, and I was diagnosed with juvenile Alzheimer-type dementia. I said to my husband, who was accompanying me, "I'm sorry."

2019年(44)

Early November: I have increased my part-time work to two to three times a week. I have developed a rhythm of getting up in the morning, I am taking less medication for depression, and I feel that I am getting better.

Joy in life and living

1

Joy that has come to you after onset

I have important friends and places I can feel connected to.

2

Joy that remains with you even after onset

I like to help and support others.

3

Joy that remains with you even after onset

Relaxation, massage and day spa

Something you would like to do in the future

As a kind of peer supporter, I want to get to know people who are like me, listen to them as they go through anxiety, and be there for them.

Challenges in daily living

Physical and mental dysfunctions

Message to the society

I vividly remember saying to my husband, "I'm sorry," when I received the diagnosis. I instantly apologized, thinking that I would cause trouble to those around me and that my husband would not be able to slow down even after our son graduates from high school. We were expecting that we would be able to enjoy our time together once our son finishes high school. The mother of my university friend had juvenile dementia, and I knew how difficult it was for my friend to take care of her. I also saw how quickly dementia progressed in the main character of the drama "Dairenai (Great Love)." So my image of dementia was "not being able to do anything and wandering around." I thought it was the end of my life.
A university friend was caring for the mother with dementia, and I was also influenced by the drama. I thought that I had only another 10 years to live. I had information only on the very severe stages of the disease.

However, after meeting people with the same disease and seeing those who were still well and surrounded by people 10 years after diagnosis, I began to have more hope, knowing that not everyone would be like that. I went through difficulties when young and feel that I would not be falling further in my life. And, when I heard a person with dementia said, "We only live once, and it would be a waste to dwell on something forever," it reminded me of something my homeroom teacher in junior high school told me: "We can look forward and live. We can look behind and live, too. If we live anyway, let us look forward and live. At the juvenile dementia support center, I met Moriya-san from the day service. Moriya-san talked to me when I was withdrawn, and I was able to meet staff and members of the center. I think these things gave me hope.
Also, if there are more supporters in the community who understand the disease and more day service facilities, I think I would be able to live in a more creative way, and not in despair.
I sometimes feel hurt by words of others, for example when getting told that I do not have dementia because what I have is juvenile dementia, but I feel comfortable in my current work environment here at the BLG because I find a place to feel safe here.

I sense the struggle of those many people who are becoming unable to speak. They know their feelings to certain extent, but it is becoming more and more difficult for them to verbalize the feelings.
Now, I am grateful that, although there are ebbs and flows, I am slowly finding things I want to do. I do not want others to go through the same experiences that I did.

I think I was diagnosed at an early stage. I hope that as many people as possible can learn about the anxieties, worries, and creative ideas that are uniquely relevant to the early stages of the disease. I will do my small part to convey such information through social networking and lectures.