Providing Care for the Caregiver

My name is Dawn Brown and I am my son’s caregiver. My son, Matthew, is 33 years old and has been living with a mental health condition since he was 8. He has schizophrenia.

In addition to being Matthew’s caregiver, I am professionally committed to making a difference in the lives of other families and individuals affected by mental illness as NAMI’s Director of Information and Engagement which includes member and HelpLine services.

The research study being released today, On Pins and Needles: Caregivers of Adults with Mental Illness mirrors my experiences as a caregiver and also reflects those of thousands of moms, dads, husbands, wives, sisters and brothers whom I’ve spoken to on HelpLine calls. So I want to think that this opportunity allows me to speak for them as well.

When mental illness strikes an individual, it affects every aspect of their life, and everyone in the family. In most families, caregivers emerge as the ones that step up and step in to meet the challenges of providing care and support to their loved one with the mental health condition.

In my family, I am and will always be Matthew’s caregiver. It’s a lifelong responsibility.

Matthew was a very difficult child to parent. By second grade, he’d received a psychological evaluation and afterwards, meeting with the psychologist and psychiatrist, we were told that our son was psychotic. I was heartbroken and grieved the loss of what I’d hoped and dreamt for my son. This was the beginning of our journey through the mental health system.

When a minor is living with a mental health condition, parents are key participants in decisions about treatment, special education services and meeting their child’s needs. Matthew received the best in all these areas. Still over the course of his childhood and teenage years Matthew required three hospitalizations because violent rages and manic episodes. I was taught how to drop him to the floor and physically restrain him until he regained control as a way to protect him and us from harm.

The stress and isolation were significant. Every outing was unpredictable and friends and family feeling helpless drifted away. The exhaustion of daily battles with Matt was unending. The strain on our family’s relationships rose to the breaking point, and Matt’s father and I divorced. Matt’s older brother broke ties with him. The break-up of families is common and leaving single parent caregivers with a huge responsibility that negativity affects even their ability to maintain employment.

When I remarried, Matt moved in with his father. Still I was the parent that took Matthew to appointments and worked with the school. At his father’s house Matt’s mental health deteriorated. The summer Matthew graduated high school at 18; he moved back into my household and experienced a major psychotic break.

Since Matt was now an adult, I’d lost the ability to have him hospitalized, require he take medication, and see a psychiatrist or even doctor. Becoming progressively worst, Matt would wander through the community sometimes running or hiding because he believed people were hunting him. He’d sit outside of the basement storage area listening and sometimes talking to the voices he believed were from dead people living under the stairs. He thought I was dead and needed his help to get to heaven. He refused to get help. I couldn’t force him, and the mobile crisis team that visited said he wasn’t sick enough or “a danger to himself or others”. There was nothing they could do. “Be careful and call us back when he gets worse,” they advised.

Matthew’s psychiatrist suggested I stop offering him medication expecting that within a few days he would become even sicker, and we’d be able to get help. “Be careful,” he warned. This is one of the most heartbreaking and dangerous situations we deal with on the HelpLine. A caregiver and the individual with the mental illness are put at great risk because help isn’t available until a dangerous situation develops.

Without medication, Matthew’s behavior became even stranger. As precautions, we removed all the knives and sharp objects, placed motion detector alarms in all the hallways and dead bolted the doors at night so he couldn’t leave. We moved the other children into our bedroom. Within four days Matthew’s condition had deteriorated and the Mobile Crisis Team arranged for Matt to be hospitalized. He was cuffed and taken by police to the state’s psychiatric hospital. My beautiful son, so young; he’d never even shaved.

Caregivers of adults with mental illness have great responsibility and very limited authority. After Matt was hospitalized, I was faced with a maze of social support services, mental health care providers and treatment options that required competencies in social work, psychiatry, psychology, case management, negotiation and conflict resolution.

Helping caregivers at this early point after a diagnosis or hospitalization could avoid missed opportunities and false starts and insure that all resources and services were utilized.

As Matthew’s caregiver some of the things I needed to learn, on the fly, included:

• What was HIPPA? How could I overcome this obstacle, so I could be informed about Matt’s condition and participate in treatment decision?
• What was needed to apply for disability and access Medicare and Medicaid benefits?
• What were our community mental health services and how could Matt access them?
• What were supported housing, day programs, peer support, job training and rehabilitation and what role would they play in Matt’s recovery?
• What was cognitive behavioral therapy and how to apply its’ principles?
• Nine different medications required learning about psychiatric pharmacology and drug interactions.

Struggling to comprehend what had happened and how it would change our future, I asked at the hospital about programs for patient families and was told there were none. As an afterthought, I was given a day and time when an “outside group” met at the hospital. It was a NAMI Family Support Group. Later I attended the NAMI Family-to-Family education program. Peer support and family education play an important role in a caregiver’s well-being and equip them better help their loved one.

After two weeks in the hospital, I was informed that Matthew was being discharged and when I could pick him up. Despite the fact that he was still activity psychotic, they felt he was stable enough to come home. I was faced with one of the hardest decision of my life. As my son pleaded to come home, I was advised to say no. Far too often patients are released to a caregiver while they are still in crisis.

Refusing to allow Matthew to come home was also a strategy for finding a long term solution to meeting his overwhelming needs. Patients in state psychiatric hospitals that can’t be discharged to a family member and are too fragile or vulnerable to be dropped off at a homeless shelter are kept inpatient until appropriate community services become available. In fact, they are moved up the waiting list ahead of people in the community because of the expense of keeping them hospitalized is far greater than community services.

It’s all about the money and lack of community resources. A person can wait years, and without a long term solution for meeting the needs of a person with mental illness, caregivers often watch as their loved one begins cycles of repeated hospitalizations, criminalization and substance abuse.

I didn’t abandon Matt when I refused to take him home. Two evenings each week and one afternoon on weekends were spent with him at the hospital. I was a member of his treatment team. I was lucky. Many families are miles away from their loved one because the only available psychiatric hospital is across the state or they live in a rural areas without services.

Matthew was discharged from the hospital into community mental health services 12 years ago, and while he’s made amazing progress, I’m still his caregiver. We talk every day and twice a month we go shopping together. Matt’s receiving disability and working part-time, but I still need to contribute to his income for essential needs. I’m his representative payee for SSDI. I meet twice a month with his group home manager and twice a year with this treatment team. I manage his doctor and dentist appointments. I fuss about hygiene and eating habits.

Occasionally, there have been set backs and my involvement has become essential. Matthew had a period of homelessness, and I spent weeks finding emergency housing and providing transportation. He was falsely accused of a crime, arrested and jailed until the investigation cleared him. I hired his attorney and paid the legal bills. He didn’t receive his medication in jail and required exhaustive support and crisis care services until he stabilized. He fell and broke both elbows that required four surgeries, and I was with him through the hospitalizations and rehabilitations. A housemate and friend was stabbed and killed at their day program, major setback.

Everyday caregivers wait on pins and needles for another call that turns their life upside down, and for many of us the endless stress and uncertainty leads to depression and anxiety.

Despite the schizophrenia and all that Matthew’s been through, he’s accomplished so much. He’s comfortable and happy with his life. I’m his caregiver and recovery partner. I can only imagine how things might have turned out if I’d not been there.

If I had a message for other caregivers it would be “Hang in there.” Well-informed, supportive caregivers are best positioned to provide the time and effort necessary for essential support. A family’s involvement is the best indicator that an adult with mental illness will reach and sustain recovery.

Today, I work at NAMI helping to inform and support other caregivers so they can continue to play this important role.

Today, I want to ask all of you to consider how to best support caregivers through legislation, resources and recognition for their role in the support and recovery of others.

The above post is Dawn Brown’s remarks she shared with members of Congress, policy makers, family caregiving advocates, mental health professionals and others for the release of the research study On Pins & Needles: Caregivers of Adults with Mental Illness on Feb. 23, 2016. It has been edited for clarity and length.