～Through my experiences as Fighting Siblings～
(Nurse, Pediatric Surgery Ward, University of Tokyo Hospital)
Ⅰ.At the beginning
I have a younger brother who was born with severe disabilities. From an early age, I was involved in the care of my younger brother and grew up as a “sibling of a disabled child.” In this article, I will discuss my own experiences and thoughts as a “sibling of a child with a disability,” and my thoughts on the necessary support for families of children with severe mental and physical disabilities, especially siblings.
Ⅱ.Introducing my younger brother
My younger brother is currently 27 years old. He was born with congenital brain diseases such as microcephaly and cerebral palsy caused by cytomegalovirus infection during fetal life. He also had severe swallowing problems, but was able to ingest paste-like foods as a child. However, as his body developed, it became increasingly difficult for him to take oral intake, and he had a gastrostomy constructed at the age of 18. He subsequently underwent a tracheostomy due to deterioration of his respiratory condition and currently requires 24-hour ventilator management.
Due to severe mental retardation, he is unable to speak meaningful words, but before the tracheostomy he was able to vocalize and express his intentions. Even after having a tracheotomy, he is still unable to speak, but communicates through facial expressions and body movements. He has difficulty sitting or standing and is bedridden, but when he was young he was able to roll over and crawl on his back to move to areas of interest on his own.
Currently going to day service 1-2 times a week, 2-3
He lives at home and on remaining days he makes short stays at a facility once a month.
Ⅲ.Life with younger brother during childhood
- Acceptance of younger brother’s “disability”
It was from the middle to upper grades of elementary school that I clearly accepted my younger brother’s disability. I think I had the image of a “disability” in my mind even when I was young, but at that time I just assumed that “my younger brother is like this.” I remember thinking that my younger brother’s illness would heal someday, and whenever I visited a shrine, I always prayed that my younger brother would get better. As I make friends on my elementary school , I have more opportunities to play with my school friends.
It was when I was in the third or fourth grade of elementary school that I began to realize that there was something different between my friend’s brother and my younger brother. The reason why something was wrong started from small things like, “My younger brother is in the first grade of elementary school, but he still watches childish programs on TV.” “My younger brother can’t speak like other children, he can’t sit by himself, he can’t eat by himself…that’s what makes him a disabled child.” I think that he has come to accept his disability. By the time I was in middle school, whenever I introduced myself, such as when changing classes, I would say, “My younger brother is a child with a disability,” as if it were a cliché. My younger brother was a natural presence for me, and I think that being the “sibling of a child with a disability” meant something to me as one of my characteristics. At the same time, I feel that I had a strong feeling that I had to protect his brother, who had a disability. I naturally began to think, “I was born a healthy child, so I have to do my best to do double covering my younger brother,” and “I have to be strong.”
- Helping with my younger brother’s care was “everyday”
Many siblings take on the responsibility of caring for their compatriots and helping with the housework from an early age, and from an early age I was also involved in caring for my younger brother as part of my mother’s help. By the time he was in the third or fourth grade of elementary school, I was able to do everything by myself, including helping my younger brother with excretion, bathing, and eating. No one forced me to do it, and it came naturally to me in my life with my younger brother.
When there is a child with a disability in the family, the siblings may feel that it is difficult or pitiful because they have to help with the care, but from the perspective of the siblings, it is important to help them with their care. Because he had been living like this for a long time, having to take care of his younger brother was “natural.” As a result, I rarely felt that having to care for my younger brother was difficult.
My parents praised me every time I helped take care of my younger brother. Also, when I interacted with people involved in my younger brother’s rehabilitation and the families of my younger brother’s friends, I felt that I felt better about myself when I received recognition from others, such as, “Your are great,” and “Your mother would be saved if you helped him.” Perhaps I was trying to establish the significance of my existence even as a child.
- I want to entertain my younger brother through rehabilitation.
Since I was young, I had many opportunities to participate in my younger brother’s events. When my own school was closed, I would take my younger brother to his doctor’s appointments and rehabilitation, see what the trainers were doing, and then go home and help my younger brother bend and straighten his joints and improve his limbs. I was imitating rehabilitation activities, such as how to take positions. Even as a child, I realized that when I showed my younger brother something he was interested in, his eye and hand movements were better than usual, and one of my games was to consciously do this. Normal siblings can run and play pretend games together, but I was not able to play with my younger brother like that. Making my younger brother laugh by showing him how I was playing by myself was a form of “play” for both of us. My first thought was how much fun I could make my younger brother with my powers.
When I was young, I sometimes thought, “What if my younger brother was a healthy child?” It’s not a negative feeling like not wanting to help take care of my younger brother, but rather a feeling like “I want to run around with my younger brother” or “I want to compete with my younger brother to see who is faster.”
I think it stemmed from a longing for a normal sibling relationship.
- I felt lonely because my parents were completely focused on my younger brother.
As I mentioned earlier, living with my younger brother was something that was “normal” for me, but there were times when I felt lonely and painful. When my younger brother became unwell, my mother became more attached to him than usual. Sometimes my mother would accompany my younger brother when he was hospitalized, and sometimes I would spend time alone with my father only. My father would come home late from work, so my father and I would sometimes have meals together late at night, and sometimes my grandmother would come over to make dinner, leading to an unusual lifestyle.
When I was in elementary school, my younger brother was hospitalized for about a week to have his tonsillectomy, and I was temporarily placed in a children’s home. After school, I took a different route back to a place that was not my home, and had the experience of living with children I was unfamiliar with. Although my memories are vague as it happened when I was young, I do remember clearly that I was lonely.
Ⅳ Fear of losing my brother
The younger brother’s physical function peaked in his mid-teens and began to decline, requiring medical treatment such as tube feeding due to difficulty in oral intake, gastrostomy, and tracheotomy. Looking back on those days.
- My brother’s decision to have a tracheostomy
My younger brother had been repeatedly suffering from pneumonia due to gastroesophageal reflux, and was often treated as an outpatient or hospitalized patient. When my brother was 15 or 16 years old, he underwent two surgeries under general anesthesia. Around that time, his physical strength began to decline significantly, and he was repeatedly hospitalized due to pneumonia and other illnesses. Around the age of 17, his oral intake became difficult and he needed tube feeding, and at the age of 18 he had a gastrostomy.
A few months after the gastrostomy was performed, my younger brother was hospitalized with pneumonia. When he was admitted to the hospital, his general condition was already poor, and he was admitted to the ICU and required mechanical ventilation, including endotracheal intubation. His doctor asked his entire family to come to the hospital, and it was only then that the need for a tracheotomy was explained to him. The doctor explained, “Endotracheal intubation is absolutely necessary to save life” and “Once extubation is possible,
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Even if the patient had scoliosis and tracheomalacia, there was no guarantee that endotracheal intubation would be possible again, and “tracheostomy would be better.” My younger brother had gotten sick many times before, but he had gotten over it each time, and somewhere in my heart I thought lightly, “He’ll be okay this time, too.” However, when he heard the doctor’s explanation, he was once again faced with the fear of “his brother’s death,” and I vividly remember that my entire family panicked. I will never forget the sight of my younger brother under sedation and being controlled by a ventilator when I visited him in the ICU for the first time. At the time, I was a fourth-year student at a nursing university and in the midst of clinical training, but I was in no condition to concentrate on my studies. It felt like I was suddenly faced with the reality of my younger brother’s death and the choice of having a tracheotomy, which I had only vaguely imagined until then.
One of the reasons our family was reluctant to have a tracheostomy was because of the loss of my younger brother’s voice. This is probably a problem faced by many families considering tracheostomy. As mentioned earlier, although my younger brother could not speak meaningful words, he often used his voice to express his thoughts. In various situations, such as when he called out to people, when he was happy, when he was sad, etc., he tried to convey something with his “voice”. Taking away his younger brother’s “voice” will also take away his younger brother’s ability to express himself as well as the joy in his life.
“Providing life-sustaining treatment may save his life now, but he may have to live with even more pain in the future.” “I feel sorry for him because he won’t be able to speak.” , “Will I be able to take care of my younger brother who has medical equipment at home from now on?” The whole family discussed the seriousness of hurting his younger brother’s body and mind and taking away his abilities. They also researched information about tracheostomies on the Internet and other sources. My parents also asked me questions, such as “What is a tracheostomy?” and “Will I be unable to speak for the rest of my life?” as I was a nursing student at the time, so I did some research on my own. I also had to explain it to my parents. In the end, I decided to perform a tracheotomy because I wanted my younger brother to be alive. I desperately wanted I younger brother to be happy, saying, “It’s hard to breathe right now, but once things calm down, I think we’ll be able to have fun and be like younger brothers again,” and “No matter what the situation is, I’ll stay home.” I want to live with my younger brother.”
The decision was made after considering the happiness of the entire family. It was a very difficult choice, and I still feel that I had no choice but to have a tracheotomy to save my brother’s life.
- A younger brother who lost his “voice” due to a tracheotomy
When I first saw his brother with a tracheostomy, I was glad to be alive, but at the same time I was acutely aware that my brother had lost his voice. After the tracheotomy was completed, I was surprised to find that he could not make a sound, and the pained look on his brother’s face is still etched in my mind. My younger brother’s voice, which I had taken for granted until now, suddenly disappeared, and I felt a strange feeling as if I had lost my younger brother who could make a sound and had been reborn as a younger brother who could no longer make a sound. ing. I wanted to hear my younger brother’s voice, so I searched around the house for any audio or video recordings of my younger brother’s voice.
- Changes in family daily life
After the tracheostomy, my family, especially my mother, who was my primary caregiver, added “medical care for my younger brother” to their lives. In their daily lives, they were forced to do things they had seen in hospitals but had never actually touched, such as inhalation, suction, and managing ventilators. Actually seeing a ventilator at home is not an easy task. In addition to checking whether the circuit of the respirator is stretched, whether the tracheostomy tube is not obstructed by sputum buildup, and whether there is insufficient water in the humidifier, the respirator should not be used day or night. must be aware of the alarm. According to my mother, when she first came home after having a tracheostomy, she worried about things like “What if I suffocate due to sputum blockage?” and “What if the ventilator comes off before I know it and I can’t breathe?” There were times when he could not sleep at night due to anxiety.
Also, since my brother’s tracheotomy, the people he interacts with have changed. While there was no medical treatment, the family was able to survive on their own, but when medical equipment such as ventilators became necessary, it was often difficult for the family to do so alone, so they needed visiting nurses, home helpers, and short-term visits to facilities. They began to utilize medical resources such as hospitalization. Currently, many people, such as visiting nurses and home helpers, come in and out of homes. For people who are reluctant to let others into their home, this must be an unacceptable lifestyle.
In this way, my younger brother’s tracheotomy and placement on a ventilator brought about major changes in the family’s life.
Ⅴ. Anxiety about the future as siblings
As a sibling, the thing I think about the most about the future is how I will care for my younger brother after my parents pass away. As the younger brother grows older, the family members caring for him will naturally also grow older. In the not-too-distant future, there will come a time when parents will feel the limits of their ability to care for their younger brother. Furthermore, if one of the parents were to become ill and require nursing care, their current lifestyle would change dramatically. How will my brother and I’s lives change at that time? I won’t know until the time comes whether I should send my younger brother to a facility or whether I should make major changes to my current lifestyle and take care of him. After my parents pass away, who will make the decisions regarding my younger brother? Should I do it as my brother, or should I leave it to a third party? I often feel anxious because I can’t find the answer. I believe that all families and siblings of children with severe mental and physical disabilities who live at home are faced with problems like this.
My parents have said that they have no intention of letting me, as a sibling, take care of my younger brother, but we have not yet discussed the specifics of what we will do if my parents are no longer able to care for my younger brother. do not have. As a sibling, it is difficult for me to discuss this with my parents. However, I would like to prepare and be prepared little by little so that I am not suddenly forced to make a choice like when I decided to have a tracheostomy.
Ⅵ. Support for siblings
Up to this point, I have described my experiences as a sibling child, but finally, I would like to share my thoughts from a nurse’s perspective regarding support for sibling children.
- Support for siblings who are forced to be separated from their parents
Using respite or home-visit nursing to reduce the burden on parents who are caring for a sibling will also create more time for parents to focus on their sibling. My parents also used respite to attend most of my school’s entrance ceremonies, sports festivals, and other events. This applies not only to respite hospitalizations but also to regular pediatric hospitalizations.
I wonder if it will. Hospitalization of a sibling is no different from respite for the sibling child. It’s also a chance to have your parents to yourself, who usually hang out with your compatriots. I think that one form of care is to ask the family members who are accompanying the sibling to go home and make time for the sibling and child while the sibling is in the hospital. Without family members to accompany them, care in the ward may become difficult. However, I want them to realize that this is connected to the care they provide to their siblings.
- Support for siblings who try too hard
I myself have had the experience of being approached and praised by the medical staff when I took my younger brother to see a doctor or for rehabilitation, which boosted my confidence and made me enjoy caring for my younger brother. Some siblings may push themselves by saying, “You have to try harder,” in response to comments such as “You’re great” or “You’re doing your best.” For this reason, I don’t know if it is correct to say, “You’re doing your best,” in general, but I think it’s important to speak to your siblings in a way that suits their situation and the emotions they’re feeling. I think so. Depending on the hospital, visitation restrictions may be imposed if the siblings are young. Siblings do not know where their compatriots are, what they are doing, or why their parents are so attached to their compatriots, and they feel isolated and alienated. We believe that a simple comment from medical staff can lead to a sense of security and self-efficacy in siblings.
- Support for siblings’ future anxiety
As I mentioned earlier, I sometimes find it difficult to talk to my parents about my concerns about the future. Furthermore, there may be quite a few families who have no idea what could happen in the future. As children with severe mental and physical disabilities grow older, the families who provide care for them naturally also grow older. Medical professionals can provide information on available systems and support, what choices other families have made, and make suggestions about the future lives of children with severe mental and physical disabilities and their families. I think it might be necessary.
Growing up as a sibling of a child with a disability,
There were times when I felt a sense of uneasiness and loneliness. Also, since I was born a healthy child, I sometimes felt that I had to do my best in my younger brother’s place, and that I had to be strong. Some siblings may have worries about their compatriots. We believe it is necessary to pay attention to siblings who grow up alongside children with disabilities or illnesses, and consider what kind of support is needed at each stage of development and living environment.
◦Shinya Chiba. Thoughts and support required by families of children with disabilities who require medical care; Through their experiences as siblings. Pediatric Nursing 2018; 41 (5): 563︲567.
◦Shinya Chiba. Decision-making support for tracheostomy in children with severe mental and physical disabilities; considered from the sibling’s perspective. Pediatric Nursing 2019; 42 (5): 624︲629.