When my son Ben was 20-years-old, he was finally diagnosed with schizophrenia after five years of chaos and frustration — what I later came to know had been symptoms of the gradual onset of his illness. At the time, I’d thought he was just having a tough adolescence. I’d thought perhaps he needed more father figures (Ben’s father had deserted the family when Ben and his sister were little, and had been missing ever since). I tried everything to help: therapy, tough love, letting go, stepping in, humor, punishment, family time, letting him hit bottom so he’d learn his lessons, and almost a year in a teen wilderness program. Absolutely nothing seemed to help: at least not for long.
These years of futile attempts to stem the tide of a burgeoning serious mental illness (SMI) in my beautiful, bright, popular son Ben might have been made much easier if only we had known what was happening. Despite all the professional help we sought, from pediatricians to school guidance counselors to psychiatrists, no one seemed to want to keep us, the family, informed as to what might be happening beyond behavioral issues. It felt like no one was hearing us.
By the time Ben was finally diagnosed, we had learned a lot on our own from outside resources: NAMI (National Alliance on Mental Illness), various books from memoirs (like the one I eventually wrote, Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope) to factual guides, and websites. We had also learned how to make a place for ourselves on Ben’s treatment team by insisting on things like sharing information, even when the doctors felt they could not share with us.
Two years and five hospitalizations later, Ben began to stabilize on medications that finally worked for him. Since then, we have walked along with him on the road to rebuilding his life — a road that is neither predictable nor easy. Setbacks and detours abound; obstacles and challenges — like fear, frustration, stress, medication side effects, and the years lost to untreated symptoms — appear without warning.
These obstacles exist for caregivers to navigate too. As we sit on the front lines of treatment — often supervising medications, observing symptoms and setbacks, and helping to provide structure and community — we have our own set of needs. When these are met, we can be much better — and happier — partners in the process toward successful outcomes in schizophrenia. The need is great for awareness, respect, support, and resources.
A recent survey of caregivers to adults with schizophrenia confirms what we, as Ben’s family, already knew from experience. We have care responsibilities each and every day, with practical tasks (or, the physical burden), and also the emotional burden of things like grief, fear, and worry (97% of the caregivers surveyed said they worry on a regular basis about their loved one with schizophrenia).
Caring for with someone with schizophrenia also has other elements: social isolation and stigma. We, for instance, were uninvited to some events after Ben was diagnosed — or asked to leave him at home. Many people still misunderstand schizophrenia and will fill those gaps with fear. 79% of the caregivers surveyed feel their loved ones have been treated differently by others; over half feel they have been treated differently as a result of their loved ones’ schizophrenia.
Despite all this, the survey found that 94% of caregivers try to maintain a positive attitude — and with support, that is much easier. Our belief in Ben has helped him to slowly rebuild his life. He attends college part-time, and recently moved up from a job as a cashier to become a skilled and popular restaurant server. We could not be more proud of him; and yet, I often wonder if he’d be even further along the road if our family had received support and resources earlier in the game. We lost a lot of time in chaos, and so did Ben.
If you, the health care professional, can find empathy for the caregiver experience, it will put you in a good position to see how the family in crisis you first meet (when they may be at the end of their rope, hanging by a thread) can become a family who can help with treatment. This is often a family who cares so much but simply doesn’t know what to do.
Here are some ideas:
Awareness. Listen to the family. Let them fill you in on history, feelings, observations.
Respect. The family you meet in crisis may not tell the whole story. Give them a chance, and the tools, to be of some realistic help. Get the patient to agree to a waiver if possible so the family can be informed.
Resources. NAMI Family-to-Family, brochures with information, a lending library in your practice, and mental illness educators
An informed, supported family can be a valuable ally in treatment, from early detection to successful outcomes. An ignored, stigmatized, family can be a source of setbacks.
We need to extend awareness to families and caregivers who live with mental illness every day. We are one of them — and with your awareness partnership, we can dare to continue to hope – and help.
Randye Kaye is the primary caregiver to her son, and author of Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope.