Many of us have struggled with loving someone who suffers from severe mental illness. Sometimes it is a close family member we see suffering. Other times it is a partner or a spouse. What should you do when you see odd and unsettling behavior in people you love? How does one react when you see the person you care about more than anything suffer?
A person might think they know how they would handle this situation, but until one has lived it, one has no idea. All the Things We Never Knew: Chasing the Chaos of Mental Illness by five-time Emmy-winning reporter Sheila Hamilton tells the story of her struggle as her husband David’s mental illness unfolded before her. By the time she recognized what was happening, it was too late. Her husband committed suicide within six weeks of a diagnosis of bipolar disorder, leaving Hamilton and their 9-year-old daughter to pick up the pieces.
Addiction.com recently talked to Hamilton about her new book.
Q: It is always extremely hard to learn that someone you love is suffering with severe mental illness. How did you first discover that your husband was dealing with bipolar disorder?
A: Surprisingly, it was my former husband who finally told me of his diagnosis. He read the DSM as an inpatient and said, “check, check, check,” when he read about [the symptoms of] bipolar disorder II. His psychiatrist and his caseworkers didn’t tell me anything about his working diagnosis. It would have been so helpful as a caregiver to have information about bipolar disorder, and how best to support someone who was suffering from the consequences of mania rapid cycling.
Information is key to supporting someone with bipolar disorder, yet the framework of our patient confidentiality laws unfortunately often sets up barriers between family members and the person who most needs our help. Much clearer information sharing could alleviate the chaos and confusion many families feel when attempting to help a person who is in a mental health breakdown.
Q: It was only six weeks between your husband’s diagnosis and his death. What was your experience with the existing mental health system at the time?
A: I was aghast. “One Flew Over the Cuckoo’s Nest” was filmed here in Oregon and the conditions at David’s “privately contracted in-patient experience” were so similar to that disturbing film I felt as if I was watching a horror movie. The nurses worked behind bulletproof glass. There were no windows. No books. No experiences that might help a person whose brain had been traumatized and who was looking for relief.
David saw a psychiatrist every two to three days who attempted to work on a new cocktail of drugs. That was the treatment regime. I found David suffering from acute dystonia from an overload of neuroleptics. He was frozen, unable to move from his position on a couch.
There was no mention of recovery or any attempt to help David deal with the traumatic events that had sent him into a tailspin. The entire experience was so dispiriting. The hospital where David was treated is now attempting to create an entirely different experience for patients with a trauma-informed/sanctuary-model approach to care.
Q: Looking back on things, what do you wish you knew then about accessing services that you do now?
A: I wish I’d known how inexact a science psychiatry actually is. I wish I’d known how important it is that the person suffering from the extremes of mental illness be allowed to be a part of their own recovery process. I wish I’d known the alternatives to in-patient psychiatric care and the effectiveness of other programs that rely less on pharmaceutical solutions and more on healing from trauma.
David had just lost his father, his business was going under and we were in the middle of a divorce. He needed practical help to deal with those traumas. Instead, he was drugged. The drugs didn’t work and the failure of the experience only served to make him more convinced to carry out his suicide.
Q: While medication is an important tool to help folks who are suffering with mental illness, as of late there has been a shift toward recovery. What are your thoughts around that?
A: The recovery model makes sense to me. I truly believe that we are all along a spectrum of mental wellness to mental illness. With the right combination of stress, lack of sleep, loss and trauma, (combined with a genetic predisposition toward mental illness) any of us can be tipped over into the extremes of mental distress. I believe in using medication as a screwdriver in the toolbox of care, not as a jackhammer.
I also serve on a board called the Foundation for Excellence in Mental Health Care. It is marrying the passion of private philanthropy with the world’s top researchers and programs to bring recovery-based care and supports to every community.
Q: How have you and your daughter tried to heal from the loss of your husband?
A: We were adrift for many months, as one might expect. David left us hundreds of thousands of dollars in debt with no plan for helping us recover from the profound grief of his suicide. I might not have recovered if not for witnessing Sophie’s response to David’s death. She honors him for his love, for his exquisite tenderness and his nine years as her doting and wonderful daddy. And she also lives squarely in the present.
Sophie let grief wash over her on the days when it was difficult and allowed optimism and joy back in her life on the days when it was easier. Children can teach us much about not attaching to our grief, or allowing a traumatic event to define the outcome of our own lives. Sophie and I have both become advocates for people with lived experience/mental illness because we both believe we are in a position to help destigmatize brain disorders. There is so much to be hopeful for. And as human beings, it our obligation and moral calling to help those who are suffering. We have chosen life over retreat, love over bitterness. We are doing better every day.