At the first hospital, patients like Aya with a disease of the cerebellum, which controls the body's motor
functions, were treated in the Neurology Department. In the early stage of her illness, we felt a sense of
security because it was part of Nagoya University Hospital. We commuted a long way feeling relaxed, without ever regarding it as a hassle. But, as Aya's disease progressed, she became unable to move around on her own.
For various reasons, the hospital refuses to allow her to stay.
The more serious a patient's illness gets, the better is it for them to stay and receive treatment at a
hospital with a comprehensive medical system and facilities. But the present medical system doesn't allow
that. Hospitals like that have a policy of providing 24-hour care, so personal caregivers are not permitted
to stay there. But how far is 'nursing' care provided by the hospital? Who is responsible for the part outside
the 'medical' care? There is now other way but for the family to commute every day to compensate for that. If
you can't do that , the patient cannot remain at the hospital and must move to a private hospital. However,
there are not many places available for special diseases like Aya's.
Thanks to an introduction from Dr. Yamamoto, Aya was treated for two years at Akita Hospital in Chiryu City.
This was located a long way from our home, so her contact with the family was greatly reduced. Going to see
her once a week was the best we could do, and we had to rely on a caregiver to look after her on the other
There seemed to be no end in sight for her life in the hospital. We wanted to bring her closer to us, so we
started looking for a suitable hospital in Toyohashi. First we made a telephone inquiries to various
hospitals. When we found one that we felt might accept her, we visited it and explained the details of her
case. We were moved from hospital to hospital. Then she spent around one year at N. hospital in Toyohashi.
I knew there was nothing to worry about as long as they clearly understood Aya's condition. But, to be
honest, as her mother I worried a lot every time she moved to a new hospital. Would she be all right?
If she got phlegm stuch in her throat or her body went stiff, she might suffocate and die. I wondered if they
could provide the appropriate emergency treatment if that happened. Luckily, the woman doctor in charge of
Aya had been taught by Dr. Yamamoto. I felt relived when I heard the two doctors sometimes met each other
at the university hospital.
In june this year, she moved to Koseikai Hospital in Toyohashi for the third time. She is still there today.
At the beginning, she could hardly eat due to the stiffness of her body. It may have been the result of the
tension and fatigue caused by moving from hospital to hospital.
"Next time you become unable to breathe properly," a doctor in the Department of Surgery told her, "we'll
give you a tracheotomy." He also kindly explained to Aya by writing in her notebook. He wrote: "You'll be
all right. Don't worry. If you get better, we'll immediately close it up again." I have been reassured by
the efficient cooperation between the Departments of Internal Medicine and Surgery and help from the
I can only visit Aya in the evening on weekdays or on Sundays, so I can't meet with her doctor. But a
nurse always informs me of the day when her doctor will be on duty. I can contact the doctor to discuss any
worries we have and Aya's questions that she has written in her notebook. The doctor makes every effort to
answer our questions. I trust him, I thank him and I respect him. He provides Aya with peace of mind and
Aya smiles. Aya loves taking a bath. Receiving the news that she will soon get the chance to take one gives
her something to look forward to.