Caring for Siblings of Sick or Disabled Children

We adopted my brother when he was five. It soon became very, *very* evident that he had a lot of emotional and some physical issues we hadn't necessarily expected. I remember, achingly clearly, my mom telling me that she and my dad still loved me as much as ever but that my brother needed more of their time right now. I was seven. I don't fault my parents; they did the best they could with two very, *very* different kids. But it made me decide I only wanted one kid, at best.

The book The Normal One by Jeanne Safer does an excellent job on this topic. It’s especially valuable for adults who were the “normal one” in a household with a physically or mentally ill or otherwise disabled sibling.

In one instance, I believe a young boy killed his mother by beating her with a broom. His sister was severely autistic and the boy was not getting his mother's attention.

Great article! I'm delighted to see this issue getting more attention and more hospitals are creating programs that not only involve siblings, but include them in their sick sister or brother's treatment plan. I lost my sister Allie to Leukemia 26 years ago and in her memory and honor, Allie's Helping Hands was created to provide 1:1 mentoring support for siblings. Our Big Sib: Little Sib program matches each sibling with a team of trained volunteers who understand the struggles this special group of siblings face. https://www.allieshelpinghands.org/

Things that worked (ish) for me, coming from a house where there was 27/4 nursing care and a hospital bed sitting in the living room for more than ten years: 1. Getting out of the house as much as possible (all summer) 2. Moving across the country when I turned 18

When I worked in a group home for adolescents 14-18 I discovered by accident that many of our boys had seriously ill siblings. It was not an issue addressed in training nor in the literature then. For the kids who act out there needs to be specific attention paid to this issue and helping the families get through this family crisis. The parents were so focused on keeping the ill child alive that the problems with the acting out child were just more than they could cope with. Sometimes just having family meetings and bringing the issue out in the open really did help. It wasn't in the budget, but we found time to do this anyway. But it needs to be addressed in institutional child care.

Such an important and complicated topic and not enough resources for parents or siblings! One of our children went psychotic at age 19 and was ultimately diagnosed with schizoaffective disorder. Helping that kid get on track was monumental but remembering he had a sister a year older and away at college was, for a while, impossible. We have a name for what happened to us...a "mental health nuclear bomb". We had to search for the right support for the sibling; it came in the form of a very sophisticated therapist. I still don't know of any books for teenage or young adult siblings who have major mental health issues except some on alcohol/drug addiction. It's complicated. A sampling of issues experienced by the "well" child: 1. I do not have a "normal" sibling; 2. I will never have a "normal" relationship with that sibling (I will have something, but not what my friends have); 3. My parents love me but they are not available to parent me; 4. My needs are not as important as my siblings needs; 5. I shouldn't have any needs; 6. What if my parents die and the responsibility of caring for this sibling falls on me; 7. I'd rather trade places with my sibling (some might say not live) than live with the guilt of being the one who didn't get sick; 8. Can I have biological children and how do I approach this conversation with a future spouse?

I was a well middle child sandwiched between two siblings who had serious, disabling, chronic medical issues and needs, although neither one's situation was life-threatening. There were pros and cons to my position. Pros: I was unusually empathetic from a very young age, with a bent for helping others, and deep reserves of love. I think I am known to be helpful, kind, and patient most of the time. Most of my work life has been in helping professions. And I wasn't the kid who had repeat surgeries or hospital stays; I was lucky. Cons: I learned -- and was told -- from an early age that my own needs were small potatoes compared to those of others, specifically my siblings' and my parents', and by extension, most of the world's. I carried a sort of "survivors' guilt" that drove me to try to compensate for the worry my parents felt about my siblings, by being no trouble to anyone ever. I still struggle with voicing legitimate needs and concerns, decades later, even when I myself have suffered serious medical problems as an adult. My middle-aged siblings have bullied me by saying or suggesting to me and to other people that I am not meeting my "obligations" toward them. I am lucky that my spouse builds me up instead of tearing me down, and lends me a backbone when my own falters. That said, I do love my siblings, and often enjoy them. But only in small doses.

I grew up with a younger sister who had branchio-oto-renal syndrome that left her with severe hearing impairment and problems with kidney functioning, and have been able to see that so many of my own difficulties growing up could be traced to that family dynamic. My parents were struggling with the expense and time commitment of making sure my sister's needs were met within a large family, and I was so often expected to be the smart and mature one, the one whose needs could come second or third or fourth. I wouldn't trade the person I have become, or the wonderful person my sister is, and my parents are, but for many years I felt so guilty for having needs, even though my health was fine. To make things worse now, my husband has become profoundly disabled by two strokes, and our sons are having to grow up in a household with a sick family member (and now with a single parent, since their father has to be in a care facility). It is a constant balancing act to make sure they know that I am there for them, when I am also in grief for my marriage and my co-parent, and for our family dynamic. I have tried to remember my own experience with my sister and not fall into the trap of thinking my older son should be more mature and independent, or that my younger son needs more empathy than upbringing, because of what's happened with their dad. He has been in a facility for nearly two years and we are still struggling to find our way every day.

Wonderful article! If anyone is interested in a local organization that does fantastic work, look at Friends of Karen. They support critically ill children and their families. They provide siblings of ill children with birthday gifts, holiday gifts and run a wonderful back to school program. They are based in Westchester County. I have donated for more than 20 years!

A real test is when the parents age and can no longer care for the disabled child? Do the siblings step in and pick up the slack? Can the siblings find mates who assume this burden? If there’s been a lot of resentment, the answer is no.

I'm glad to see that some attention is being paid to the siblings of sick or disabled children. I hope similar efforts regarding children of sick parents will be coming. While pediatric departments know they're dealing with children, it seems many adult hospital departments forget their patients may have children who have needs and questions as well.

It's a big issue. A relative has a profoundly disabled child and the sibling has pretty much raised himself as the parents have to do so much for the disabled child.

A friend whose first child was born, both developmentally disabled and later also diagnosed with schizophrenia, also had 3 younger children. Her wake up call came when the doctor for her eldest bluntly told her she was putting all her effort into a child who would always have profound limitations, and depriving the three who needed those efforts in order to develop and thrive. She was shocked and angry, but quickly realized that it was the truth. For her, this was the wake-up call. She was fortunate that she could afford to provide outside caregivers for her eldest and give plenty of attention to the children who needed it so badly.

The next to last paragraph would be far more insightful if we were to substitute the word "community", for the word "professionals." Unfortunately, as my family can tell you having raised two special needs children, one who is incompetent, ( both now adults) there is no cavalry coming. Not even a whisper of one. Other than the disappointment of being trapped in an American culture of "you are on your own", the entire family is very resilient and stalwart in knowing that we have one another. Best not to fool oneself.

I have a lifetime of thoughts on this particular subject. As a “survivor” of an upbringing with 2 brothers that had Duchenne’s Muscular Dystrophy, I can safely say that very few days, years or decades have gone by without feeling the impact of their gradual deterioration and untimely deaths, first in the mid 1970’s and second in the early 1990’s. The impact includes recently scattering my 91 year old father’s cremation ashes over my brothers’ graves, per his instructions. My 89 year mother has requested the same when her time comes. I suppose the ideal “Father Knows Best” family would understand how chronic illness and death affects all involved family members and thereby assure the healthy siblings get the love and attention they require. Unfortunately, that was not my family and I’m quite certain the same applies to many others. In our case, the suggestions outlined in this article were beyond the thought process of anyone involved. It was more like...”You don’t have Muscular Dystrophy! What the hell are you complaining about!”...an exaggeration only in the choice of words. But there’s nobody to blame and a thorough understanding that everyone was doing the best they could. Kudos to the writer of this article and to the NYT for printing it. It is a rarely addressed issue outside of those with personal involvement. Regarding the impact on career choice...dead on target as I am a physician who chose to specialize in pediatric rehabilitation. So, maybe it’s not all bad.

Having had a child endure a lengthy life-threatening disease, his brother also suffered from: separation anxiety (his brother was his roommate), fear, decreased attention from his preoccupied parents (when he needed even more), sensing anxiety and fear in his parents. The list goes on. A serious illness in the family affects the entire family. Young people do not know how to process or express the accompanying emotions. Oftentimes, neither do the parents. Everyone needs to be heard and supported.

I painstakingly sculpted a 1499 word mini-essay regarding my experiences as the older sibling of 2 brothers with Duchenne’s Muscular Dystrophy. I watched both slowly decline and eventually die, the first when he was age 16 and the second at age 23. When I hit submit, the piece was gone. It was perhaps a bit angry but pointed out the utter sense of hopelessness that my parents dealt with for 25 plus years and my sense that there was just nothing left for me and I was on my own emotionally from far too early an age. The impact of life with my brothers didn’t end with their passing and likely never will. I recently scattered my 91 year old father’s cremated remains over the graves of his sons, as he instructed. My 89 year old mother wishes the same when her time comes. There is no blame now but plenty through turbulent adolescence. I have since realized that everyone was doing their best but with very limited resources. My wife and I had the honor of taking care of my parents in their old age. God knows they spent their lives taking care of my brothers. Yes, there was a big impact on my career choice as a physician specialized in pediatric rehabilitation for many years. I have since moved on to other projects. I interpret the initial deletion as a message...if I have something to say, write a book. Kudos to the article’s author and the “failing” NYT... which I love...for thinking such issues worthy of consideration.

The key to coping with family members with a long term illness or disability is to have a resource game plan. If the kids feel that they are completing for limited resources this will strain family relationships long term. In our family we had two disabled family members a stepfather with failing health and an autistic step sibling. You can imagine the chaos of frequent hospital emergencies, doctor visits and therapies appointments compounded by work, educational and family demands. Our family didn’t find a workable family solution until our mother was forced to come to terms with a future alone with a disabled adult child. Our mom moved back to Italy and found a solution there with a nonprofit school, support services and reduced cost national health care services. The advantage being the extended family gets the support services we need with out putting a strain on family relationships, time or finances. My sibling and I have finally been able to balance our lives, families and careers as a result. We still struggle to cope with the imbalances of the past. We are grateful our marriages and children are sheltered from the chaos and completion for resources we experienced in our youth.

I was the well sibling. Although I was very young, my father sat down and explained to me what was going on, why my parents had less time for me, and how I could help. Talk to the kids. They are people too.

Siblings of a child who dies are often angry and feel diminished by their parents grief as well. Seeing your mother cry over the loss of a child "while I am still here" makes them feel less worthy.

There was no internet, no hospice; there was nothing when our 20-month-old first child was diagnosed with leukemia in 1969 - when the average survival after diagnosis was 24 months; when there was no hope of cure; when bone-marrow transplants hadn’t yet been invented; when the treatments were brutal. There certainly wasn’t any formal support for parents then, let alone for siblings. Another “clinic mom” and I (both of us RNs) arranged with a hospital social worker to start a parental support group, but it was short-lived - of the 14 sets of parents who belonged, 13 of those children died within the first year of the group; our son was the only child left. Our son lived for 8 years after diagnosis. We had 2 more children in the 3 years after his diagnosis - our daughter has grown up into a remarkable woman and mother of her own two kids; she is empathetic, smart, warm, and happy. Our other son has had a life of difficulty and unhappiness and has caused great pain to many other people. We did our best, but it was not enough. I am so happy when I read of what life is like now for the families and siblings of children with leukemia - there is great likelihood of cure, there is the internet, there are support groups for parents and siblings. I can imagine that it is a much less lonely and harrowing time for families now.

this article well describes how an illness in a family affects the entire family. however i have always hated the phrase "compete for attention". siblings often seek out attention, usually enough to meet their needs. rarely do they view attention as a finite thing that if they get more that another gets less. the phrase competes suggest they want an equal amount, yet most siblings of disabled dont seek that, and do understand the affected child's need for more. but they still seek that amount that they need.

I wish these kinds of articles had more—any—empirical evidence to back up their arguments. When I was sixteen, I had major surgery after a year-and-a-half of failed drug regimens. What should’ve been several days in the hospital late July turned into thirty over the course of a month-and-a-half. There was complication after complication. I lost quarter of my body weight. The nine inch incision opened. Catheters, central lines, NG tubes, infection. Both of my parents work full time, but one of them—almost always my mom—was at the hospital every night. I missed the first two months of school, and it took me a year to fully recover. My brother, fifteen at the time, had been a needy, immature brat since he was a toddler, but, with my parents gone so often, he was sort of forced to grow up. It felt like a turning point for him. He became independent and mature in a way I honestly never thought would be possible. Though the illness had been chronic, the surgery ordeal was a relatively acute experience. Still, it seemed to be a real turning point for my brother. Maybe he was an exception or maybe we just don’t really hear about the (overall) good cases?

I had leukemia as a teenager. My sister, two years younger, has never forgiven me for feeling abandoned and left at home alone while all everyone could think about was me. So much so that when I needed a transplant 11 years later she initially refused to be an organ donor. 25 years later and it’s still an unspoken wedge between us.

When I was ten, my older brother was diagnosed with Juvenile Diabetes. He was thirteen and an extremely brittle diabetic. His care took most of my Mother's time and we were a family of three children. For me, there was very little supervision but I seemed to need very little, for I was a very complacent child. Fortunately or truly, unfortunately, my brother died at sixteen of kidney failure secondary to Diabetic Nephrology. Which again, changed the dynamic within our family structure. It is an extremely difficult path for parents with one disabled or sick child with no easy cures. As monies for continual health care and preexisting conditions infringe on the families ability to handle the needs of the child and the family.

My sister, the first of we three, was born with cerebral palsy. My parents, overwhelmed with guilt and anger, had no support in 1937. My brother, middle child, and me, third and last, were conscripted into a crazy war of denial and ridiculous expectations. Our individual successes in school were downplayed or ignored lest we "outshine" my sister and thereby spotlight her disability. She was provided a paid premier private college education while we were not. My brother was expected to provide her with dates with his friends, and I was expected to play out the mid-century feminine ideal because I was the "normal" girl. No one was perceived individually. Ignorance and superstition warped my childhood, and almost warped me. To quote Arthur Miller: "Attention, attention must be paid." (And yes, my parents suffered as well.)

So what is indicated here is family therapy interventions that include sibling needs assessments and planning, and community support

You know it's not all bad. There are some advantages to having a sick and/or disabled child. Like my kids got a free trip to Disney World from Make-a-wish because of their brother's disability, and many very happy family camps from Easter Seals. But seriously, maybe point out some of the positive character traits that develop, and rename the article to be "When one kid has cancer.." because it's misleading now.

For further learning, see The Sibling Support Project: https://www.siblingsupport.org/ For 25 years this organization has been celebrating and supporting siblings -- from the very young to the very old -- of people with disabilities. Along the way, the organization and its affiliates and partners have accumulated a lot of wisdom and created a community that stretches at least halfway around the globe. Great people.

I am 24 and have never had children, nor experienced a a sick sibling growing up. However, I really enjoyed reading this article. Good job Dr. Klass. It was very well researched and written. I think it contains many pieces of advice that may be applicable to an array of family situations.

Our daughter is fortunately not as medically affected by her neurological disorders as many, but she was always different. Her older brother for sure has learned compassion and understanding for others not like himself from her. We tried not to make too big a deal for him of his sister's differences, and honestly I think he was glad that it was her and not him who got all the extra attention from professionals. His being older helped in that he was able to understand a lot of what was going on, but I suspect a younger sibling would have just considered it the family norm. We always did try to treat our kids as individuals, and give them each the attention they wanted or needed (not always the same!). So far (they are thirtyish) we seemed to have lucked out.

For a child, a willingness to help is as important but can be as difficult as a willingness to accept help. When siblings realize how much they need each other, they realize that their lives at a young age are largely defined by their relationship. And the most rewarding years of one’s life may also be the most trying. If siblings are right with each other, they’re ready to take on anything—together.

A family we know has 3 adult children. The oldest was born with several mental and physical handicaps. She is now very frail and has the understanding of a 5 year-old. The two other kids grew up full of resentment. The second, a girl, assumed the job of being 'mother' as the actual mother is a dithery type who was overwhelmed by her children and husband. She's still angry with her mother and bosses her around mercilessly. The youngest, a boy, was jealous of the oldest girl and still seems to be pouting about not being seen as 'special.' It was a combination of personalities and situations that just didn't work.

Many of the resources described are for siblings of pediatric oncology patients and are very necessary. There is a lack of resources for siblings and families whose chronically ill child has a rare disease, or a psychiatric/behavioral disorder or syndrome. The article doesn't mention the tremendous toll that having a child with serious medical needs has on th e marital relationship. These siblings are more likely to suffer the disruptions/loss of their family unit. The role of families, neighbors, schools, and all the programs for kids in understanding what the 'healthy' kids experience is important.