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‘The Forgotten Survivors’ Author, Shannon Jaccard, says Siblings Need to be Part of the Crisis Conversation

“It’s wonderful to be a big sister, or as I was often referred to as a ‘little mommy.’ The day my brother came into this world was one of the best days of my life.” Shannon Jaccard, author of The Forgotten Survivors: a sister’s journey through her brother’s mental illness

Author Shannon Jaccard says it was only after her brother, Jeff, was killed during inpatient hospitalization that she realized when staff mentioned he was having a bad day, it meant they had put him in seclusion and restraints. On April 11th, 2008, hospital staff did so because Jeff wanted a cigarette break before the designated time. With only two minutes to go, a nurse gave him two Ativan to calm him down. Jeff continued to be distressed that he wasn’t able to go outside, so staff asked his mother to leave so they could “work with him.” They then put him in a five-point harness, injected him with additional medication, placed him prone on his stomach, and walked away. According to the coroner’s report, the combination of prescribed medications in his system alone would have caused a heart attack. The nurse eventually noticed Jeff wasn’t breathing but didn’t perform CPR, and there was no crash cart in the psychiatric unit. “They had to wheel it in from another part of the hospital, losing valuable time, which is incomprehensible.”

Jaccard, CEO and co-founder of Ballast Health and former CEO of National Alliance on Mental Illness (NAMI), San Diego, said before her brother’s death, she’d been under the impression that hospitals no longer did seclusion and restraints. “Not only do they destroy a person’s autonomy, but they also pose the highest incidence of injury to patients and staff.” The challenge for family members is that what goes on behind closed doors in a psychiatric hospital isn’t often transparent, which causes a rift between loved ones who often push for hospitalization and peers who understand the institutional trauma, or worse, patients may experience. Jaccard says family members aren’t invited into the hospital setting except during restrictive, controlled windows between 60 and 90 minutes and are often unaware of what the person is experiencing. The group most in the dark, she says, is siblings. “We just want our brother or sister to get better, and because we don’t understand the nuances of what transpires in the hospital, we encourage the person to be compliant.” Jaccard says the inpatient setting is more punitive and less restorative than siblings expect. Unlike a prison, she was able to hug Jeff, wrapping her arms tightly around him when she’d go visit, but staff still checked her purse and had to buzz her in. The environment, she says, didn’t feel different than the institutional setting of a prison, and when staff doled out punishment, it seemed more about power struggles than safety. 

Jaccard believes siblings need to be part of the crisis conversation and given information on what their brother or sister would likely experience if hospitalized, other crisis services in the community, and family support programs that exist so that they know how best to support their sibling and parents. Siblings, she says, are the forgotten survivors of mental illness at psychiatric conferences, in real-time during a sibling’s crisis, and if the crisis results in death, people ignore sibling bereavement. “When a person loses a spouse, she’s a widow, and the loss of a child is considered the worst of all, but when a sibling dies, there is no term for it. You’re just a person who lost a brother, which people somehow see as inferior to all other relationships.”

Despite this lesser status, siblings often have to hold up their parents and the ill brother or sister while not acknowledging their own pain for fear that it will make it harder on their family. This, says Jaccard, amplifies distress that likely developed long before. She says when there’s a child who has increased needs because of physical or psychological distress, siblings are often left out and put pressure on themselves to be a helper and perfect for their parents, leading to anxiety, depression, and potentially, their own mental health crisis. 

There are solutions that could integrate siblings in the behavioral health crisis and recovery process. Jaccard believes when there is an identified crisis, supports similar to Local Outreach to Suicide Survivors (LOSS Teams) should be deployed to all immediate family members of the person, including siblings. These teams, she says, would provide outreach, support, and include behavioral health experts and people whose loved ones have been in crisis. They’ve lived through it and can tell families what to expect and proactive steps to take. Jaccard says siblings should be included in all stages of the person’s treatment, including confidentiality releases while hospitalized and in recovery action plans. “Siblings have been relegated to experiencing crisis alongside their siblings but can’t change outcomes; they aren’t just the forgotten survivors but also the forgotten potential mobilizers. By ignoring this population, and not giving them psychological support, experts are also ignoring advocates who will one day be (or perhaps already are) politicians, policymakers, and CEOs who could work to fight against mental health stigma.”

Below is an excerpt from Jaccard’s book The Forgotten Survivors: a sister’s journey through her brother’s mental illness.


Chapter 12

When the Light Extinguishes

“Grieving is like having broken ribs. On the outside you look fine, but with every breath, it hurts.” – Author Unknown

This chapter is about sibling loss.  It can be read separately from the rest of the book and is broken into topic segments.  I delve into grief and it’s sudden return. I talk about the dreaded annual date of loss and the wavering belief in faith when a sibling dies.  Lastly, I talk about comfort and healing.  

Sibling loss is unique.  I hope this chapter does justice to the rollercoaster of emotions you have experienced since the loss of your sibling that maybe no one has ever asked you about.  

Grief

When your sibling dies, you lose a part of your past, present, and future, and one of your most compassionate friends.

My mother said that I became a second mommy at the ripe age of four, which was the moment my brother was placed in my arms. As he grew, naturally he had to follow my rules. I was the oldest. Need I say more?

I remember when he first came to kindergarten and I was in third grade. I would watch the kindergarten playground to make sure he was okay and that no one was teasing him. I taught him how to tie his shoes, to sneak candy, and how to be daring. It seemed like from the moment he learned to walk, I’d find him coming into my bed at night. I always made sure though, to take the side of the bed by the wall, because Jeff was a mover and I didn’t want to fall off! On Christmas mornings, I was the one who kept him entertained by grabbing our stockings and giving my parents some extra time to sleep. 

I had dreams for our future. I wasn’t surrounded by cousins growing up and decided that Jeff and I would have kids at the same time and create a larger family for our children. I, of course, would have to approve of whomever he married. Remember — I was the oldest.

Siblings may take different paths and life may separate them, but they will forever be bonded by having begun their journey in the same boat.

A few years ago, my husband and I were about to put on a movie when my mother called. She was talking to my husband, but I could hear her screaming with tears. After he hung up, he looked at me and said, “Jeff was killed.” In one moment, with one phone call, the world tilted. For everyone else, the world keeps going, but when your brother or sister dies, so does a piece of you. My brain couldn’t rationalize my husband’s words. He knew I was planning to visit my brother the next day; therefore, Jeff couldn’t be dead.

Grief isn’t reserved just for the parents. I have often felt that people asked me how I was doing as an afterthought. What my parents, and all parents who have lost a child, have gone through is the most unimaginable loss. As a mom, I never want that experience. But Jeff was gone, and I lost my best friend — my past and my future. Siblings deserve to be asked, “How are you today?” In fact, grief is unique to each person, and loss comes in many different forms.

When my brother died, I didn’t just lose a brother — I lost an uncle for my children, a caretaker for aging parents, a part of my team. I lost the person who held the memories of my childhood — a person who could embarrass me by telling my husband stories of the past. I lost a piece of me. And when you lose a piece of yourself, it doesn’t just heal. You learn to adjust without it. 

For me, the hardest thing is looking at pictures and knowing I have memorized every single one that will ever exist with Jeff in them. The years of new pictures and memories will not include him. But then my daughter smiles, and while she will never have met her uncle, she carries a piece of him in her smile. In that moment, I have a new memory of my brother.

For all of you who have lost a sibling, no matter how young or old, or when you suffered your loss, let me ask, how are you doing?


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