last update:20171205
Hello, everyone.
I' m Fumi Chiba. I live in Sendai.
I’m very happy to have this opportunity to talk here.
This is a photo of my mother and myself.
Her name is Shukuko Chiba. She suffered from ALS for 10 years and died 4 years ago.
I’m here today to talk about my mother and her life with a ventilator.
In 2003, She was 56 years old her foot felt leaden and it was getting hard for her to wear slippers.
She was an English teacher and her husband had passed away 3 years ago earlier.
My mother had 2 daughters, one is my sister, 25 years old, the other is me,23 years old at that time.
She visited an orthopedic surgeon and had surgery on her back.
After the surgery, I just quit my job and left my home for Toronto, Canada, to study English in May 2004.
Mother told me to study hard and she would work hard on her rehabilitation. She saw me off at the entrance and she stood on her own feet.
Even though she tried to work hard on her rehabilitation, her feet and also legs felt leaden.
She decided to get a second opinion at neurological department.
In January 2005. My mother was told that she had ALS.
I received my mother 's email in the early morning telling me the news.
“Good morning! Yesterday we had a family interview about the test results. I was diagnosed with amyotrophic lateral sclerosis - ALS. It was the disease I most dreaded having. Please find out on the internet what kind of disease it is. You are probably shocked. But don’t forget our family motto is ALWAYS KEEP SMILING! As you know, our easy-going personality is our lodestar and it guides us to be happy. It helped us always. It’s very precious.
You are with me even if you are in Canada.
Keep them on your mind the things I mentioned about and search the disease on internet.
Love, Mom”
I was shocked and felt miserable learning about it on the internet. I might have to spend my twenties and thirties taking care of her and give up on my career, marriage, having children and everything until my mother died. Without a ventilator my mother might die, so I called my mother and asked, "Will you put on a ventilator?" She laughed and said, 'Why should I live for my daughters any longer?'
Neither I nor my mother's closest friends could persuade her to be on a ventilator. It was because she did not want her daughters to sacrifice their lives taking care of her. Many Japanese patients, especially female ones, feel the same way. But my life had already been “sacrificed” whether she chose to be on a ventilator or not because I would never have been able to forget my mother’s “sacrifice” in choosing an early death by refusing a ventilator. Also, my mother seemed to avoid facing her illness with many excuses.
So I started to write a blog about my mother in order to get information. There was no SNS (social media) such as Facebook at that time. However, I was able to make friends with ALS patients and their families. Also, I found a colleague, Ms. Yumiko Kawaguchi, she had a family member with ALS and was also a director of Sakura-kai, the association supporting ALS patients. She wrote on my blog “Come to Tokyo” I went to Tokyo to meet her. I was just grasping at straws. In Tokyo, she taught me the Sakura model, living without family, getting home care 24 hours. Then Ms. Kawaguchi told me to follow a patient and see her house. That patient was Ms. Misao Hashimoto, who had started to live using the Sakura model.
I saw her way of life first hand and I thought "this is it".
Let my mother live on her own with the “Sakura model” and let my sister get married. I decided to get a job and live by myself. Neither daughters’ lives were sacrificed. I returned to Sendai and told my mother. "Mom, come on, let's put you on a ventilator!"
This strategy was a great success.
There are many other reasons, but my mother eventually was put on a ventilator in December, 2005.
This picture is the first one after she was put on a ventilator.
It took 3 years before we could start the Sakura model. My mother lived by herself in her own house with home care, and I also lived by myself and worked as a secretary in a hospital.
I’m going to introduce my mother's care team: doctors, nurses, caregivers, volunteers, her friends, and university students.
They are volunteers and caregivers. My mother wrote an article on a local newspaper to recruit volunteers.
And these are "Team Smile Kinoko", nursing students.
They took care of mother at night.
Every night 2 students took care of her but it was my birthday. We got together. I always cooked dinner with the students and my mother was good adviser of love. But she often leaked their romantic stories. A ventilator never stopped her big mouth.
My mother loved having parties. We had a lot of parties. This is a Cherry-blossam viewing party.
And Christmas party. My mother would typically prepared KFC but I prepared a turkey then. Everybody wore Santa costumes but Mother was a reindeer.
This is my wedding ceremony 5 years ago.
My mother lost a lot of her functions, but I never lost anything and got a job, got married; nothing has been sacrificed. Thanks to ALS, I was able to make many wonderful friends and had good experiences. These experiences made me confident. I got so many things. I have a lot of fond memories when I look back.
My mother was a teacher.
She taught not only English but also care for ALS.
First, she wrote her textbook.
This is a manual book about how to care of herself.
From morning to sleeping care, about using a ventilator and suctions, fixtures and how to transfer to a wheel chair and so on.
Everyone involved in her care read it and took care of her based on it. Every time there was a change, she made sure everyone knew and revised it.
My mother sometimes gave quizzes.
“What can be considered when the low-pressure alarm sounds?”
“What is the assist control?” and she explained and taught them.
When they are anxious about her care, when my mother wanted to know more, she asked the doctor to have a study meeting.
Her doctor was Dr. Koichiro Kawashima. He sometimes had study meetings in my mother’s house. We learned what to do if the tracheal cannula was pulled out, and about the mechanism of the ventilator.
I’m from Sendai. It became known because of the 2011 T?hoku earthquake and tsunami.
I took this picture on the day after the earthquake. My mother’s ventilator had been connected with a vehicle battery device because of the power outage.
On March 11th, 2011, I was at my office on the 9th floor. It was just like standing on an uncontrollable swing that was shaking. All the lights went out. I had to walk home in a snowstorm for 2 hours.
Because the ventilator could only work for 6 hours with a battery, caregivers bought a big vehicle battery. And an old neighbor connected it with clips. It helped for about 3 days
But we decided to evacuate to the nearest hospital on the 13th because the aspirator’s battery ran out and my mother’s temperature had dropped to 33 degrees.
We were able to stay in this operating room.
However, everything was not OK and not so safe, Nurses were unfamiliar with ALS. Nobody could communicate with my mother. Some nurses had never heard to the alarm sounds and there was no space. They asked us to go home as soon as possible because my mother seemed fine in spite of ALS. Our home was comfortable and my mother’s team was really attentive to her needs because she taught them well. But there was still no power in our house. I sometimes had to say, “I know it sucks, but now just hang in there.”
Finally, we had enough. Mother couldn't keep smiling as her motto stated. It was hard to keep saying hang in there for me. When the power was back on, we went back home with a wheelchair and we had a welcome back party with students! There were neither gas nor water available, but friends gave us a lot of food.
After going home, we prepared a car battery with inverter to conect to the ventilator and aspirator. There were still after-shocks and when I felt earthquakes, I saved up water in the bathtub, washing machine, pans, and some poly tanks. I went to many gas station to buy petrol and kerosene everyday. I receaved many relief goods from Tokyo. A lot of people in Japan and foreign countries helped us. Thank you very much.
My mother lived with a ventilator and died with a ventilator on.
It was always natural and nomal for my mother for these 10 years.
This picture, is of my mother when she was hospitalized for heart failure, and had come back home for end-of -life care. Before she came back, Team Smile kinoko, my husband and I prepared these pictures and early Christmas. During the last few days of her life, we also had small parties there.
There are some pictures of the last care. Let me introduce them.
The sign says:
“Welcome back home, Shukuko”
She looked surprised because there were photographs of her life for her to look at.
She also watched videos of her life taken from the 1980s to 2000.
Everyone, care givers, friends, etc. came to see her. They waited for her coming home.
Reliable nurses were there to take the initiative and I felt encouraged by their presence.
Graduate students stayed with me until my mother passed away.
Hiroko, who set up Team Kinoko, now works as public health nurse.
Haruki, who gave me time to sleep, now studies at a university to be a doctor.
They sometimes visit me and are good friends.
What I wanted was to see my mother off happily in a house full of life.
I could not ask my mother what she thought, but everyone believed it was how she would have wanted to go.
My mother with a ventilator was a mother for me and a teacher all the time.
Perhaps I think that it was my mother's way of life.
Everyone thought “how does Shukuko want to live”, “what do we need to do for Shukuko to help her live the life she wants”, and so we lived together and kept smiling.
Because of them, I was aware that she had ALS but was a mother like before.
That's the story of my mother with a ventilator.
Thank you for your listening.
＊作成：青木 千帆子