I am one of nine children. We were very close throughout our lives, but my brother’s late stages of illness and death changed our family dynamic. It’s as if we all went into our own hole to hide. We walk the walk, but it feels different. Several of my siblings have a lot of anger. They’ve distanced themselves. We haven’t been able to move past this.–CB
The relationship among siblings is unique in that our siblings have known us throughout most of our lives. We share a common history unlike any other relationship. When a sibling becomes ill, it strikes our core. Being of a similar age to our siblings raises our awareness of our own mortality. Whether the illness is caused by genetic issues, habits, or unexpected events, when our sibling suffers, we feel vulnerable. We cannot escape the thought, “This could have been me.”
Just because we are siblings doesn’t mean that the illness of a sib will heal past childhood and adulthood differences. In fact, crises tend to accentuate personality traits and styles of coping. This can make unresolved rifts grow deeper, separations wider, and pain sharper. For some, the crisis does create a bridge toward acceptance and forgiveness.
It was so hard feeling helpless when all I wanted to do was to support my sister, but she wouldn’t let me in. She was withdrawn and maybe in denial.–KBG
The lives of my siblings and mine changed. The summer our brother was diagnosed, we went to a patient/family seminar sponsored by the International Myeloma Foundation. I found out about it and got us enrolled. My sister, who is a nurse, went with Paul to his doctors’ appointments. My other sister helped him with paying bills and fighting with insurance companies. We had to watch we didn’t overwhelm Paul and only give him the information he asked for.–KL
By far the hardest aspect of my brother’s illness and death was the feeling of helplessness.–CB
Siblings often walk through life by our side. When a sibling is struck by a medical crisis, it shakes our foundation, as seen in Aileen’s journey with her sister, Ellyn.
Aileen’s Experience I Wear Purple
The stomach pains my sister Ellyn was having were diagnosed as Stage IV pancreatic cancer. She was 54 and I was 41. I refused to let my mind go to where we were headed. I took up mindfulness training with her, convinced it would make the cancer go away. I wore purple (the color of pancreatic cancer) every day. I stayed optimistic. I encouraged her and other family members. I got very involved in the Pancreatic Cancer Action Network and did a lot of research. I looked into medical trials and talked to my sister a bit about them. She thought about going to Mexico for some kind of treatment, Hopkins or MD Anderson, but she felt very comfortable with her care and didn’t want to leave her home. Her husband is a doctor and is on staff at a major university medical center in the Midwest, so she was getting great physical care, but also a lot of TLC because everyone at the hospital knew them. To this day, I wonder if she would have had more time had she gone to one of those places to be part of some kind of medical trial.
From the second Ellyn got the diagnosis, her only concern was leaving her kids, especially Caroline, who was her youngest at 17 and a bit of a “free spirit.”
Four short months after the diagnosis, her doctors said there was nothing more they could do except offer her palliative care. The day they received that news, her daughter, Caroline, went to her church youth group to help her cope with the impending loss of her mother. After the youth group, she decided to go see my sister in the hospital. On the way to see her mom, Caroline was killed in a freak car accident.
While we were all trying to prepare for my sister’s approaching death, we suddenly had to deal with the horrific loss of her youngest daughter.
After the accident, they brought Caroline’s body to the same hospital Ellyn was in. Ellyn and her husband went down to the morgue with one of my other sisters and a close family friend who is a doctor at that hospital. My sister said Ellyn touched Caroline and said, “I knew this kid couldn’t live without me.” Ellyn was so sad, but honestly, the full impact of Caroline’s death affected her differently than most mothers in that situation, because of the medications she was on due to the cancer they added other medications to help her cope with Caroline’s death.
Two days later, Ellyn’s son and I were with her in her hospital room, talking about plans for Caroline’s funeral. Her son was telling her about people who were coming from out of town to attend the services. She looked at him and just said, “Don’t they know they will have to come back in two weeks?” Ellyn died nine days later.
Ellyn was hell-bent on making it to Caroline’s funeral. Her oncologist visited the church with a nurse a day or two before with an ambulance crew to decide where they would all sit and what they would do if Ellyn needed immediate care during the service. She was so very weak. The morning of the service, I was at the hospital with her. She had been trying to do some standing every day with the help of one of us and the nurses. She could barely stand, and when I left the hospital to pick up someone at the airport for the service, I was convinced she would die while I was gone. She was so sick with the cancer I do not believe Caroline’s death was fully sinking in.
Ellyn gathered her strength and made it to the service. She was brought by an ambulance and came down the aisle in a wheelchair. She stood with a lot of help and sat in a pew. She smiled a lot at the service, while tears rolled down her face. When it was over, the nurse and her husband started to get her back into her wheelchair. She refused; she wanted to walk out of the church. She did, with her husband on one side and her two other children on the other. She had a smile on her face. She waved to people and thanked them for coming. It is my belief she was glad she would be with Caroline, or better said, that Caroline would be with her.
The compound loss of Ellyn and Caroline is incomprehensible even now. With my brother-in-law’s blessing, Caroline’s volleyball coach wrote a book that was made into a movie. While we are all a bit worried about such a painful point in our lives being so public, we do believe Ellyn and Caroline’s story is special and can inspire others. I can’t even begin to enumerate all the ways this tragedy positively affected us and literally thousands and thousands of others. The movie is called The Miracle Season.[1]
Resources for the Death or Illness of a Sibling
Although written for teens, Erica Hyatt’s book applies to adults as well: Grieving for the Sibling You Lost. [2]
Surviving the Death of a Sibling: Living through grief when an adult brother or sister dies, by T.J. Wray.[3]
Healing the Adult Sibling’s Grieving Heart, by Alan D. Wolfelt.[4]
The Center for Life and Loss Transition has an article, “Helping Yourself Heal When an Adult Sibling Dies,” by Alan D. Wolfelt, Ph.D.[5]
How To Go On Living When Someone You Love Dies, by Therese A. Rando,[6] has a section on dealing with the loss of a sibling, as well as other useful information.
Sober Siblings: How to help your alcoholic brother or sister and not lose yourself, by Patricia Olsen and Petros Levounis, M.D.[7]
“Caring for Siblings of Seriously Ill Children”[8]
“When a Sibling Is Seriously Ill”[9]
In the Shadow of Illness, by Myra Bluebond-Lang, is a book for parents and siblings of a chronically ill child.[10]
Hi, My Name is Jack, by Christina Beall-Sullivan, is a book for young children about a sibling who is in and out of the hospital.[11]
A list of resources containing specific recommendations for siblings with specific illnesses or disorders.[12]
[1] https://www.youtube.com/watch?v=bAHAwesTLB4
[2] Goldblatt-Hyatt, E. (2015). Grieving for the sibling you lost: A teen’s guide to coping with grief and finding meaning after loss. Oakland, CA: New Harbinger Publications.
[3] Wray, T. J. (2003). Surviving the death of a sibling: Living through grief when an adult brother or sister dies. New York: Three Rivers Press.
[4] Wolfelt, A. D. (2008). Healing the adult sibling’s grieving heart. Independent Publishing Group.
[5] https://www.centerforloss.com/2016/12/helping-heal-adult-sibling-dies/
[6] Rando, T. A. (1991). How to go on living when someone you love dies. New York: Bantam Books.
[7] Olsen, P., & Levounis, P. (2008). Sober siblings: How to help your alcoholic brother or sister–and not lose yourself. Cambridge, MA: Da Capo Lifelong.
[8] https://kidshealth.org/en/parents/sibling-care.html
[9] https://kidshealth.org/en/teens/ill-sibling.html
[10] Bluebond-Langner, M. (1996). In the shadow of illness: Parents and siblings of the chronically ill child. Princeton, NJ: Princeton University Press.
[11] Beall-Sullivan, C. (2010). Hi, my name is Jack (a book for the healthy siblings of chronically ill children). Park City, UT: Beall-Sullivan.
[12] https://www.chadkids.org/child-life/child-life-recommended-books.html
Featured image courtesy of Kin Li on Unsplash.
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