However, I had no choice but to endure ... February 27, 17:07 in the days accompanying my sick son
A 4-year-old son is hospitalized due to illness.
He will accompany him as a parent, but once he is inside the hospital, he will not be able to go out due to corona infection control measures.
Meals such as rice balls bought at the convenience store in the hospital almost every day.
At night, I can't even turn over in a hard cot, and when I wake up in the morning, my neck, shoulders, and lower back hurt.
How long can I endure...
(Corporate Reporter Shiori Sugimoto / Shiori Sugimoto)
eldest son's illness
Hiroaki Tanaka's (46) eldest son, Kenchi, suddenly developed a fever when he was 4 years old.
The fever exceeded 39 degrees, and I went to my family doctor.
He took an antigen test with a stick in his nose and the result was negative.
He took medicine and went home.
However, when I got home, I had a nosebleed that wouldn't stop, so I went to my family doctor again.
After using a hemostatic agent, the bleeding finally stopped, and after a blood test, the doctor told me that my blood cell components, including platelets, were a little low.
I received a bone marrow examination at the general hospital I was referred to, and was diagnosed with "aplastic anemia".
A disease in which the number of white blood cells, red blood cells, and platelets in the blood decreases, causing symptoms such as anemia and bleeding.
Kenchi-kun was diagnosed as "serious" based on his blood condition.
At the time, the Tanaka family was living in Toyonaka City, Osaka, but decided to be admitted to a hospital in Nagoya City, where there were many cases such as bone marrow transplants for children, for subsequent treatment.
It was July two years ago, the second year since the spread of corona infection began.
Beginning of “hospitalization with attendant”
The hospitalization period was initially explained as "at least half a year".
However, Kenchi was only 4 years old, and the hospital asked him to be accompanied by a parent.
His wife was the main attendant, and Mr. Tanaka rented an apartment near the hospital and started supporting Kenchi and his wife during their hospital stay.
I applied to the company for remote work and was accepted.
Every day around 5:30 in the evening, as soon as I finished work, I left my apartment and went to the hospital room.
I will replace my wife who was accompanying me and spend time with Kenchi-kun.
Then, around 10:00 pm, when Kenchi-kun is asleep, he takes a shower at home and takes a short rest before returning to his apartment.
This kind of life continued for about five months.
What triggered the change in the companionship rules?
In January of last year, when the new year began, the rules for escorts were suddenly changed.
As a general rule, only one of the parents was allowed to enter the hospital room, and the accompanying parent could not enter the hospital room without a negative proof such as a corona antigen test.
The trigger was that the first infected person was confirmed in the pediatric ward.
Like Kenchi, who was receiving immunosuppressive therapy, there are many children with weakened immune systems in the ward, and if the infection spreads, it could lead to life-threatening situations. .
After that, the parents who accompanied him could not easily go out of the hospital, and he began to live in a "canned state".
You can only move inside the pediatric ward and the convenience store and shower room on the first basement floor.
In the first place, the facilities in the hospital are not enough for the parents who accompany them.
Kenchi-kun's hospital room is a four-person room.
Another parent and child live next door across the curtain.
The only free space was the limited space above and beside the bed.
The cot prepared for attendants is 180 cm long x 56 cm wide.
It's hard and narrow, and you can't even roll over.
When I woke up in the morning, I often felt pain all over my body.
At least I want to keep my body clean.
The accompanying parent was able to rent a shower room for medical workers on the first basement floor, but it was used three times a week.
Every morning, at 8:30 a.m., parents start lining up to fill in a binder with their reservations.
If I missed the timing and couldn't make a reservation, I would spend two or three days without taking a shower.
"Suffering is condensed..." "Turn off the switch of the heart"
Mr. Tanaka's wife, Yuki, spent the next three months without stepping out of the hospital.
"I can't really remember what I was thinking at the time," she says.
Mother Yuki
“When I think about it now, I feel like I turned off the switch in my heart so that I wouldn’t feel painful or tired. Hmm, I don't feel it, I spent my time like that."
After that, I was able to change the attendant only once a month, and Mr. Tanaka took a week off from work and took over with Mr. Yuki.
Since the hospital doesn't provide food for my parents, most of my meals are rice balls I bought at the convenience store in the basement or frozen food I brought with me.
Sometimes I ate Kenchi-kun's leftovers.
Father Hiroaki:
"It's an environment where suffering is condensed. I think the biggest pain for parents is to see their children in a difficult situation. You have to put yourself in a difficult situation.You will suffer financially, and you will feel the loneliness of being cut off from society.The more time passes, the worse it is, a negative loop. is"
Increased burden on nurses
On the other hand, Mr. Tanaka also witnessed the fact that the burden on nurses has increased due to the corona disaster.
In order to prevent infection, strict measures are required, such as changing all necessary equipment such as aprons and gloves every time you enter and exit the hospital room.
The appearance of dealing with children, who are more troublesome than adults, taking blood and taking medicine.
Even when I pressed the nurse call in the hospital room, it took a long time to come, and sometimes I felt a lack of manpower.
In addition, small children need assistance such as eating, and it is said that he realized the current situation that it is difficult to take care of personal belongings without a parent accompanying him.
Why are you doing this?
According to the Ministry of Health, Labor and Welfare, in Japan, under the public medical insurance system, hospitalized patients are supposed to be cared for by nurses and other medical workers, and it is stipulated that no one else should be allowed to take care of them.
On the other hand, the Ministry of Health, Labor and Welfare states that ``if you have a child or have an intellectual disability, you can accompany them if you get permission from a doctor,'' and this is the basis for ``accompanied hospitalization'' by parents.
In other words, although nursing at the hospital is only performed by medical staff, it does not prohibit the attendance of a guardian, so if the doctor approves, it is possible for the guardian to accompany the patient.
Against this background, hospitals are divided on whether or not to actually allow “accompanied hospitalization”.
According to support groups and other sources, while some hospitals "in principle do not allow it," there are many cases where hospitals ask parents to accompany them due to the burden on nurses. The reality is that you are asked to submit a document stating that you would like to be accompanied.
Mr. Tanaka, who accompanied him to the hospital in Nagoya, was also asked to sign the documents given by the hospital, and said, "I felt that it was the form I wanted."
The Ministry of Health, Labor and Welfare is also showing movements toward grasping the actual situation.
However, when a questionnaire was conducted on the families of hospitalized patients last year, the response rate was only 1.37%, and it has been pointed out by support groups that ``the actual situation has not been fully grasped.''
Who are the experts?
Kyoko Kobayashi, a professor at St. Luke's International University, who specializes in pediatric nursing, commented on the current state of hospitalization with an attendant, saying, "There is a need for changes in awareness and policies regarding how medical institutions handle care for attendants, visits, and families. It is hoped that the level system will be reviewed."
In addition, Professor Kobayashi said, ``One thing that can be done immediately is to provide the same hospital food as the patient, even if it is paid, to the parents who accompany them or visit them. There may be things that can be considered to reduce the burden on parents, such as promoting the placement of CLS (Child Life Specialist), a professional who provides psychological and social support to children and families." .
support movement
The support group "Keep Mama Smiling" provides support for "meals" for the parents accompanying them once a month.
On the 15th of this month, when I visited for an interview, a lunch box prepared by a yakiniku restaurant in Chuo-ku, Tokyo was transported to St. Luke's International Hospital in the ward and entrusted to the hospital staff.
In fact, the chairman of the organization himself was a “person” who accompanied his two daughters, and that experience was the impetus for starting his activities eight years ago.
Yuki Mitsuhara, Director of NPO Keep Mama Smile
“For me, the hardest thing for me was the food when I was accompanying someone. I would be happy if I could deliver even just that moment.”
Three years ago, we started a new initiative to support parents who accompany their children in the harsh environment of the corona wreck.
The name is "attendant support pack".
In addition to food, cosmetics and sanitary goods provided by supporting companies, there are about 30 kinds of items such as original bowls and tote bags made by the organization.
The target is parents who accompany their children in the hospital for more than two weeks, and so far we have shipped more than 4,000 boxes nationwide.
“For those who are not in the system”
The organization is now conducting a survey to clarify the actual situation of "hospitalization with an attendant".
The aim is to shed light on the situation parents are in and what they are struggling with, and use it as material for discussions aimed at reviewing the system and improving the environment.
Yuki Mitsuhara, Chairman of the Board of Trustees
“Currently, the parents who accompany children are ``non-existent'' under the system, so if things continue as they are now, I don't think the discussion about improving the environment for accompanying children will make much progress. I hope that by taking the lead and creating a forum where we can discuss together what kind of companionship should be for children, parents, and families, we can all think about it.”
Mr. Tanaka and his family, what is your current wish?
Well, after Mr. Tanaka's parent and child introduced at the beginning of the article.
Kenchi-kun underwent a cord blood transplant last November and has been recovering well since then.
It's been over a year and a half since his first hospitalization, and he was finally able to leave the hospital in the middle of this month.
Kenchi-kun, who was 4 years old, is now 6 years old.
He will enter elementary school in April.
Kenchi-kun, who has been watching how his parents supported his hospitalization, one day before he was discharged from the hospital, he said something like this.
Kenchi-kun
: "Father, if it were 100 million yen or me, which would you choose?"
Hiroaki-san
: "I don't need money, Dad. Dad, I don't need how much money is piled up, and I don't need the money I have, so I want kenchi."
Kenchi-kun
"That's right, I'm happy. Thank you."
During the painful days of "hospitalization with an attendant", it was Kenchi-kun's very existence that became a support for Mr. Tanaka.
As a parent, she is happy to see Kenchi-kun gradually acquire the strength and kindness to understand other people's feelings.
What I'm looking forward to now is walking outside on a sunny day holding hands with the three of us and feeling the wind.
So far, the doctor has told me to avoid direct sunlight for about a year even after I leave the hospital due to the effects of the treatment, so it won't come soon, but I hope that day will come. I am looking forward to it.
And about the long-experienced "hospitalization with an attendant", I hope as follows.
Mr. Hiroaki Tanaka
"The pain of hospitalization with an attendant is a story in the hospital, so it is not visible to society. Especially in the corona crisis, I think that the wall is high and it is difficult to see inside. I don't have the energy to raise my voice about my difficult situation as I face my previous child every day.First of all, I think that improving the environment for parents to accompany children is important for treatment and recuperation of children. On top of that, I would like the government to recognize the need for parents to accompany children, and to consider the necessary support for those accompanying them.”
In fact, the two reporters I interviewed this time also experienced "hospitalization with an attendant".
We will continue to report on the issue of "accompanied hospitalization" and the issues of the recuperation environment for sick children.
Please send us information from the following submission form, such as parents and medical staff who have experienced "accompanied hospitalization".
NHK News Post
Social Affairs Reporter
Nana Kiyosaki
Joined the Bureau in 2012
After working at the Fukuoka Bureau and the Yokohama Bureau, he is currently in charge of trials Covering mainly the Tokyo District Court and High Court
Reporter
Shiori Sugimoto
Joined in 2013 Current position
after working at the Kagoshima and Osaka stations Covering a wide range of issues related to children