Caregivers of children with mental illness are struggling. What can be done to help?
by Sheilah M. Gauch
Posted September 20, 2023 | Reviewed by Devon Frye
KEY POINTS
Caregivers’ mental health is suffering as much as their children’s.
Multiple barriers to key systems make accessing care challenging.
Ongoing stress can cause chronic inflammation and physical illness.
In my last two articles, I discussed chronic sorrow and the trauma caregivers of children with mental illness experience and how we might support them. As the youth mental health crisis worsens, this group gains more attention as a critical component of their children’s care.
Harvard recently published a report entitled “Caring for the Caregivers: The critical link between parent and teen mental health.” In an accompanying summary, the authors write, “It would be just as right to sound the alarm about parents’ mental health as about teens’ mental health.”1
Let’s ask ourselves why caregivers’ mental health is suffering and explore what we could do differently. When we understand the complexity of this type of caregiving (the chronic sorrow, trauma, isolation, otherness) we can team with them—not vilify them—revolutionizing how we help them, and their children.
Historical Blame
The history of how we have viewed these caregivers—and mothers specifically—as being to blame for their children’s illnesses has forever warped the lens through which we see this group. When we could not discover why mental illness occurred, from a medical standpoint, we built a foundation to try to understand what was happening. Without clear answers, many people, even apparent experts, pivoted to blaming caregivers.
Hysteria was first conceptualized around 1900 BCE as an affliction impacting women. It later evolved to describe emotional mothers who were unable to nurture their children.2 Then there were “schizophrenogenic mothers,” a term coined by Freudian analysts in the 1940s, assigning mothers, particularly domineering ones, responsibility for their children’s illness.3 article continues after advertisement
Dr. Leo Kanner, who published a landmark paper on autism in 1943, suggested that parents were a likely cause. He saw the mothers of these children as cold and distant (hence the later term “refrigerator mothers”) and the fathers inept, unaware of their child’s needs.4
Largely, these terms have been debunked by brave caregivers who demanded better for themselves and their children. Dr. Kanner publicly apologized to caregivers in the Autism Association; parents from NAMI (National Alliance on Mental Illness) demanded schizophrenia be treated as an organic illness; and hysteria was finally removed as a formal diagnosis in 1980.2,3,4
Still, the qualitative data I have from countless caregivers shows that caregiver blame persists. Caregivers report they are often given unsolicited advice by family, friends, and even strangers, detailing how they could change their behavior to alleviate their child’s suffering. Maybe they need to discipline more, maybe they need to be calmer, or maybe they are too overbearing. The message for caregivers throughout time is clear: If your child is suffering from a mental health issue, you may be to blame.
Case Managers
In addition to the weight of these historical narratives, caregivers I work with describe the experience of becoming de facto case managers of their children’s care. Tasked with finding providers, accessing insurance, and identifying appropriate therapies, they navigate complex systems of care with little to no training.
The educational, mental health, behavioral health, substance abuse, medical, and insurance systems all have different “languages.” Caregivers of children with mental illness must learn both the written, and unwritten, language of these systems to access care, often moving between multiple systems, desperately seeking answers and relief for their children.
Additional barriers make these systems virtually inaccessible to some groups. Racial disparities prove to be a formidable barrier, with African Americans, Latinx, and Asian Americans accessing care at rates 50 to 70 percent lower than white Americans.5 Cultural differences challenge access when providers miss critical nuances of a client’s background that could assist in care.6 Socioeconomic barriers are a primary reason that some people don’t access care, with research indicating many can not afford the cost of treatment or insurance doesn’t cover enough mental health services.7
The Impact of These Barriers
Even with my professional training in mental health and education, I quickly became overwhelmed caring for my children’s mental health needs (OCD, separation anxiety, behavioral dysregulation). The support my children required (supervision, appointments, etc.) led us to decide one caregiver would stay at home to ensure they received care. Down one income, we struggled to find affordable therapy. Providers who specialized in the treatment of their specific needs, and accepted insurance, were nearly impossible to find.
Adding to this stress, our children were not regaining health. Regardless of what treatment we tried, they got sicker. We now know this was because they had underlying medical causes to their mental illness (they have PANS/PANDAS) but we were unaware of this for most of their childhoods. As their illnesses worsened, we became more isolated, fearing others must see us as to blame. Blame was easy to accept; I was their mother and seemingly powerless to help them.
Acknowledging the Whole Person
Caregivers take on historical blame, barriers to care, chronic sorrow, and trauma without hesitation. Their children are who matter most; helping them often leads to forgetting to help themselves. Providers may also be so focused on the child, they miss asking about caregivers.
The Centers for Disease Control tells us that 61 percent of adults have had at least one adverse childhood experience (ACE) and 16 percent had four or more types of ACEs.8 This means many caregivers now supporting children with mental illness have previous experiences that may complicate how they support their children’s illness.
Providers who recognized me as a whole person, with life experiences that impact how I support my children, were critically important to my family. They took the time to learn the history of serious mental illness in my family and how I fought to stay healthy and avoid this fate, only to develop acute depression and anxiety in college.
These were then the professionals who could support me when the horror of being unable to stop my child’s pain, combined with first-hand knowledge of how awful mental illness is, intensified my stress reaction. If you didn’t know this, you could have mistaken my intense fight response as “challenging,” “angry,” or maybe even “hysterical.” Those who took the time to understand and care for me were who I trusted to teach me the skills to regulate my own stress response, making it easier for me to access care for my children.
Why This Matters and Why Healing Is Essential
Learning about this stress response and how to manage it is essential for caregivers’ health. Recent research details stress as an inflammatory event that causes a myriad of illnesses, confirming what trauma therapists have known for years: stress and trauma impact physical health.9Longitudinal ACE studies previously linked multiple ACEs to chronic health problems, mental illness, and substance misuse in adulthood.10
A dear friend of mine, who is a single mother of two children with mental illness, recently said to me: “I am up all night trying to get them to bed and then can’t sleep worrying about how to help them.” Her physical health has begun to suffer. With her doctor’s appointments taking up more of her time, the worry compounds.
My friend’s mental health impacts her physical health—creating a closed loop that sustains illness. How will she keep her job if she needs to miss work for both her and her children’s appointments? Her ultimate fear is that if anything happens to her, there is no one to care for her children.
Shifts in Practice
My friend deserves to heal; her children need her and she is worthy of healing. Understanding these health implications as well as the historical blame, barriers to care, chronic sorrow, and trauma must lead us to change how we view and work with this group. At the therapeutic day school I help oversee, we worked hard to do this—creating what I call our MTSS (multi-tiered system of support) for caregivers.
Our entire staff team is trained to lead with empathy, compassion, and understanding for our caregivers. We offer a trauma group to teach tools to care for themselves and seek support from each other. We offer them coaches who assist in establishing services outside of school. We developed an intensive intake process that allows clinicians to listen to caregivers, understand their experiences, and build trust critical if we hope to help them and their children.
How can we innovate, look for new ways to support this group, and avoid history repeating itself? My own children’s mental health journey has led me to wonder: Is my family history with mental illness really a family history with complicated medical issues? I have also found healing from my own depression and anxiety as an adult through learning about this medical connection. Let’s revolutionize how we view mental illness and how we help people—children and caregivers alike.
2. Meek, Heather. “10. Motherhood, Hysteria, and the Eighteenth-Century Woman Writer”. The Secrets of Generation: Reproduction in the Long Eighteenth Century, edited by Raymond Stephanson and Darren Wagner, Toronto: University of Toronto Press, 2015, pp. 238-257. https://doi.org/10.3138/9781442666924-015
3. Harrington A. The fall of the schizophrenogenic mother. Lancet. 2012 Apr 7;379(9823):1292-3. doi: 10.1016/s0140-6736(12)60546-7. PMID: 22489328.
4. Dolnick, E. (1998). Madness on the couch: Blaming the victim in the heyday of psychoanalysis. Simon & Schuster.
6. Cham CQ, Ibrahim N, Siau CS, Kalaman CR, Ho MC, Yahya AN, Visvalingam U, Roslan S, Abd Rahman FN, Lee KW. Caregiver Burden among Caregivers of Patients with Mental Illness: A Systematic Review and Meta-Analysis. Healthcare (Basel). 2022 Nov 30;10(12):2423. doi: 10.3390/healthcare10122423. PMID: 36553947; PMCID: PMC9777672.
8. Center for Disease Control Vital Signs (2021, August 23). Adverse Childhood Experiences (ACEs): Preventing Early Trauma to Save Adult Lives. Center for Disease Control Vital Signs. Retrieved September 8, 2023, from https://www.cdc.gov/vitalsigns/aces/index.html
9. Liu YZ, Wang YX, Jiang CL. Inflammation: The Common Pathway of Stress-Related Diseases. Front Hum Neurosci. 2017 Jun 20;11:316. doi: 10.3389/fnhum.2017.00316. PMID: 28676747; PMCID: PMC5476783.
10. Center for Disease Control Vital Signs (2021, August 23). Adverse Childhood Experiences (ACEs): Preventing Early Trauma to Save Adult Lives. Center for Disease Control Vital Signs. Retrieved September 8, 2023, from https://www.cdc.gov/vitalsigns/aces/index.html
Why Caregivers’ Mental Health is Suffering
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Updated: October 1, 2023 by bmanfull@comcast.net
Caregivers of children with mental illness are struggling. What can be
done to help?
by Sheilah M. Gauch
Posted September 20, 2023 | Reviewed by Devon Frye
KEY POINTS
In my last two articles, I discussed chronic sorrow and the trauma caregivers of children with mental illness experience and how we might support them. As the youth mental health crisis worsens, this group gains more attention as a critical component of their children’s care.
Harvard recently published a report entitled “Caring for the Caregivers: The critical link between parent and teen mental health.” In an accompanying summary, the authors write, “It would be just as right to sound the alarm about parents’ mental health as about teens’ mental health.”1
Let’s ask ourselves why caregivers’ mental health is suffering and explore what we could do differently. When we understand the complexity of this type of caregiving (the chronic sorrow, trauma, isolation, otherness) we can team with them—not vilify them—revolutionizing how we help them, and their children.
Historical Blame
The history of how we have viewed these caregivers—and mothers specifically—as being to blame for their children’s illnesses has forever warped the lens through which we see this group. When we could not discover why mental illness occurred, from a medical standpoint, we built a foundation to try to understand what was happening. Without clear answers, many people, even apparent experts, pivoted to blaming caregivers.
Hysteria was first conceptualized around 1900 BCE as an affliction impacting women. It later evolved to describe emotional mothers who were unable to nurture their children.2 Then there were “schizophrenogenic mothers,” a term coined by Freudian analysts in the 1940s, assigning mothers, particularly domineering ones, responsibility for their children’s illness.3
article continues after advertisement
Dr. Leo Kanner, who published a landmark paper on autism in 1943, suggested that parents were a likely cause. He saw the mothers of these children as cold and distant (hence the later term “refrigerator mothers”) and the fathers inept, unaware of their child’s needs.4
Largely, these terms have been debunked by brave caregivers who demanded better for themselves and their children. Dr. Kanner publicly apologized to caregivers in the Autism Association; parents from NAMI (National Alliance on Mental Illness) demanded schizophrenia be treated as an organic illness; and hysteria was finally removed as a formal diagnosis in 1980.2,3,4
Still, the qualitative data I have from countless caregivers shows that caregiver blame persists. Caregivers report they are often given unsolicited advice by family, friends, and even strangers, detailing how they could change their behavior to alleviate their child’s suffering. Maybe they need to discipline more, maybe they need to be calmer, or maybe they are too overbearing. The message for caregivers throughout time is clear: If your child is suffering from a mental health issue, you may be to blame.
Case Managers
In addition to the weight of these historical narratives, caregivers I work with describe the experience of becoming de facto case managers of their children’s care. Tasked with finding providers, accessing insurance, and identifying appropriate therapies, they navigate complex systems of care with little to no training.
The educational, mental health, behavioral health, substance abuse, medical, and insurance systems all have different “languages.” Caregivers of children with mental illness must learn both the written, and unwritten, language of these systems to access care, often moving between multiple systems, desperately seeking answers and relief for their children.
Additional barriers make these systems virtually inaccessible to some groups. Racial disparities prove to be a formidable barrier, with African Americans, Latinx, and Asian Americans accessing care at rates 50 to 70 percent lower than white Americans.5 Cultural differences challenge access when providers miss critical nuances of a client’s background that could assist in care.6 Socioeconomic barriers are a primary reason that some people don’t access care, with research indicating many can not afford the cost of treatment or insurance doesn’t cover enough mental health services.7
The Impact of These Barriers
Even with my professional training in mental health and education, I quickly became overwhelmed caring for my children’s mental health needs (OCD, separation anxiety, behavioral dysregulation). The support my children required (supervision, appointments, etc.) led us to decide one caregiver would stay at home to ensure they received care. Down one income, we struggled to find affordable therapy. Providers who specialized in the treatment of their specific needs, and accepted insurance, were nearly impossible to find.
Adding to this stress, our children were not regaining health. Regardless of what treatment we tried, they got sicker. We now know this was because they had underlying medical causes to their mental illness (they have PANS/PANDAS) but we were unaware of this for most of their childhoods. As their illnesses worsened, we became more isolated, fearing others must see us as to blame. Blame was easy to accept; I was their mother and seemingly powerless to help them.
Acknowledging the Whole Person
Caregivers take on historical blame, barriers to care, chronic sorrow, and trauma without hesitation. Their children are who matter most; helping them often leads to forgetting to help themselves. Providers may also be so focused on the child, they miss asking about caregivers.
The Centers for Disease Control tells us that 61 percent of adults have had at least one adverse childhood experience (ACE) and 16 percent had four or more types of ACEs.8 This means many caregivers now supporting children with mental illness have previous experiences that may complicate how they support their children’s illness.
Providers who recognized me as a whole person, with life experiences that impact how I support my children, were critically important to my family. They took the time to learn the history of serious mental illness in my family and how I fought to stay healthy and avoid this fate, only to develop acute depression and anxiety in college.
These were then the professionals who could support me when the horror of being unable to stop my child’s pain, combined with first-hand knowledge of how awful mental illness is, intensified my stress reaction. If you didn’t know this, you could have mistaken my intense fight response as “challenging,” “angry,” or maybe even “hysterical.” Those who took the time to understand and care for me were who I trusted to teach me the skills to regulate my own stress response, making it easier for me to access care for my children.
Why This Matters and Why Healing Is Essential
Learning about this stress response and how to manage it is essential for caregivers’ health. Recent research details stress as an inflammatory event that causes a myriad of illnesses, confirming what trauma therapists have known for years: stress and trauma impact physical health.9Longitudinal ACE studies previously linked multiple ACEs to chronic health problems, mental illness, and substance misuse in adulthood.10
A dear friend of mine, who is a single mother of two children with mental illness, recently said to me: “I am up all night trying to get them to bed and then can’t sleep worrying about how to help them.” Her physical health has begun to suffer. With her doctor’s appointments taking up more of her time, the worry compounds.
My friend’s mental health impacts her physical health—creating a closed loop that sustains illness. How will she keep her job if she needs to miss work for both her and her children’s appointments? Her ultimate fear is that if anything happens to her, there is no one to care for her children.
Shifts in Practice
My friend deserves to heal; her children need her and she is worthy of healing. Understanding these health implications as well as the historical blame, barriers to care, chronic sorrow, and trauma must lead us to change how we view and work with this group. At the therapeutic day school I help oversee, we worked hard to do this—creating what I call our MTSS (multi-tiered system of support) for caregivers.
Our entire staff team is trained to lead with empathy, compassion, and understanding for our caregivers. We offer a trauma group to teach tools to care for themselves and seek support from each other. We offer them coaches who assist in establishing services outside of school. We developed an intensive intake process that allows clinicians to listen to caregivers, understand their experiences, and build trust critical if we hope to help them and their children.
How can we innovate, look for new ways to support this group, and avoid history repeating itself? My own children’s mental health journey has led me to wonder: Is my family history with mental illness really a family history with complicated medical issues? I have also found healing from my own depression and anxiety as an adult through learning about this medical connection. Let’s revolutionize how we view mental illness and how we help people—children and caregivers alike.
References
1. Making Caring Common. (2023). Caring for the Caregivers: The Critical Link Between Parent and Teen Mental Health https://mcc.gse.harvard.edu/reports/caring-for-the-caregivers
2. Meek, Heather. “10. Motherhood, Hysteria, and the Eighteenth-Century Woman Writer”. The Secrets of Generation: Reproduction in the Long Eighteenth Century, edited by Raymond Stephanson and Darren Wagner, Toronto: University of Toronto Press, 2015, pp. 238-257. https://doi.org/10.3138/9781442666924-015
3. Harrington A. The fall of the schizophrenogenic mother. Lancet. 2012 Apr 7;379(9823):1292-3. doi: 10.1016/s0140-6736(12)60546-7. PMID: 22489328.
4. Dolnick, E. (1998). Madness on the couch: Blaming the victim in the heyday of psychoanalysis. Simon & Schuster.
5. Cohut, M., PhD (2020, July 3). Racism in mental healthcare: An invisible barrier. https://www.medicalnewstoday.com/articles/racism-in-mental-healthcare-a….
6. Cham CQ, Ibrahim N, Siau CS, Kalaman CR, Ho MC, Yahya AN, Visvalingam U, Roslan S, Abd Rahman FN, Lee KW. Caregiver Burden among Caregivers of Patients with Mental Illness: A Systematic Review and Meta-Analysis. Healthcare (Basel). 2022 Nov 30;10(12):2423. doi: 10.3390/healthcare10122423. PMID: 36553947; PMCID: PMC9777672.
7. The United States Government. (2022, June 17). Reducing the economic burden of unmet mental health needs. The White House. https://www.whitehouse.gov/cea/written-materials/2022/05/31/reducing-th…
8. Center for Disease Control Vital Signs (2021, August 23). Adverse Childhood Experiences (ACEs): Preventing Early Trauma to Save Adult Lives. Center for Disease Control Vital Signs. Retrieved September 8, 2023, from https://www.cdc.gov/vitalsigns/aces/index.html
9. Liu YZ, Wang YX, Jiang CL. Inflammation: The Common Pathway of Stress-Related Diseases. Front Hum Neurosci. 2017 Jun 20;11:316. doi: 10.3389/fnhum.2017.00316. PMID: 28676747; PMCID: PMC5476783.
10. Center for Disease Control Vital Signs (2021, August 23). Adverse Childhood Experiences (ACEs): Preventing Early Trauma to Save Adult Lives. Center for Disease Control Vital Signs. Retrieved September 8, 2023, from https://www.cdc.gov/vitalsigns/aces/index.html
Category: Online Article, Press Tags: PANDAS/PANS, Psychology Today, Sheilah Gauch, Why caregiver's mental health is suffering