LICSW, M.Ed
Sheilah M. Gauch
The Whole Child
GRIEF
Understanding Chronic Sorrow
The grief and loss caregivers of children with mental illness may experience.
Posted January 10, 2023
Reviewed by Davia Sills
KEY POINTS
Chronic sorrow creates an additional barrier which caregivers must overcome to help their children.
When treatments and therapies fail for their children, caregivers may feel alone and scared as they attempt to heal their children.
Stigma and shame separates caregivers from their community.
With suicide being the second leading cause of death in ages 10-14, now is the time to support caregivers and suffering children.
There is sneaky grief and loss that caregivers of children with mental illness experience.
Chronic sorrow, as it has been called, is "ambiguous, one that rarely subsides over time, and is rarely acknowledged" (Richardson et al., 2012).
As a caregiver of children who have struggled with mental illness, I have learned to celebrate the joy and stay in deep gratitude for healthy times, yet there is a constant dull ache that persists, and chronic sorrow gives this a name for me.
In my professional role, I have listened as chronic sorrow creates an additional barrier for caregivers, complicating the stress and anxiety of caring for their children.
article continues after advertisement
Grief and loss author Megan Devine explains: "there are losses that rearrange the world" and "pain that transports you to an entirely new universe, even while everyone thinks nothing has changed"
(Devine, 2017, p.6). For caregivers supporting children with mental illness, the chronic sorrow that follows them changes everything, from losing who they thought they would be as a caregiver to how their relationships shift to how the world responds to their children and approaches mental illness.
An Unexpected Path
Chronic sorrow originates when caregivers realize their powerlessness to heal their children.
With no definitive rubrics for how to care for a child with mental illness, caregivers try multiple treatments in an effort to give their child relief.
As a social worker, it took becoming a caregiver of these children to understand the pain of this.
As you experiment with different therapies or medications, many of which fail or bring unwanted side effects, caregivers watch their children struggle.
My husband and I listened to our children speak of intrusive thoughts telling them to hurt themselves; we endured years of failed medications and therapy while we desperately sought to quiet their brains.
This powerlessness changes caregivers, who experience a deep longing to heal their children and unique sadness at their inability to do so.
Expectations for their children and hopes for how they thought their lives would be are changed by mental illness.
Their children may have unexpected behaviors that are separate from their family norms and values, not taught but generated by illness.
Their children may not get invited to birthday parties, may be too scared to attend school, or may be kicked off of sports teams.
The losses their children experience are felt keenly by caregivers.
article continues after advertisement
Our children were placed in therapeutic day schools separate from their community schools because of the level of support they required.
This separation created a deep pain and longing for what could have been and is a hard loss to name.
How do you explain the questions of why your child is no longer at that school? It wasn't that people didn't care or ask. Our lives felt so unexpected and overwhelming that we didn't have the words to describe it, and it felt cruel to share that this could even happen. If it could happen to us, it could happen to anyone.
Societal Shame
Without relief or healing for their children, chronic sorrow persists, becoming entrenched. Caregivers may find themselves as we did: with escalations in the level of need so significant, they are forced to use larger community crisis support. Police, ambulances, in-home clinical support, and state care are among these. When outside support enters your home, you must acknowledge that you are actively failing the one true task you have as a caregiver: to keep your child safe.
THE BASICS
Understanding Grief
Find a therapist to heal from grief
Sheilah Gauch
Source: Sheilah Gauch
This was also my profession, and I was powerless. The pain of having to call the police for help was nothing I had experienced. A combination of fear that authorities wouldn't understand mental illness and terror at the possibility of losing control of my child's care created abject doubt and vulnerability. When the police shared that our neighbors had also called them, the world fell eerily silent as shame flooded me. I then walked out of my house to ride in an ambulance with my small child. There were few experiences more demoralizing and emotionally crushing than that one, and few that taught me more as a professional.
article continues after advertisement
There is a 60 Minutes interview on mental health stigma explaining what I felt at that moment: how traditional rituals around illness are lost to these caregivers. No one brings casseroles to a family when a child is mentally ill as they would when there is a physical illness (60 Minutes, 2014). No one checks on them before they call the police. There is often no outward recognition from neighbors, family, or friends of the silent (or not-so-silent) pain being endured in these caregivers' homes.
Systemic Shift in Perspective
As a professional, I have the qualitative data of countless caregiver stories similar to ours. I have listened to the chronic sorrow as caregivers take note of additional losses they sustain as the illness refuses to relent. The loss of family and friend support, loss of marriage/partnership, loss of income as they desperately try to find providers to help, and ultimately loss of their own health and well-being. The full picture of what a caregiver faces comes into view: a life of searching for answers and praying that their children will survive, even if the rest of their life is gutted.