It’s 11 p.m., and my son Ben,* 32, has just come home from work. He comes upstairs and sits on the edge of my bed to tell me about his day – great customers at the restaurant, some generous tips, and a compliment from his manager. Tomorrow morning, he will finish his term paper for college.
Why is this significant? Because just 3 years ago, we were steeling ourselves for the possibility that Ben might never cooperate with treatment again. He was wandering the halls of our city’s hospital psych unit, mumbling and gesturing to his voices. He was beginning to "act out" in group, disrupting hospital procedure. Ben’s future, at best, was questionable; at worst, it would involve transfer to a substandard nursing home where he might never get the treatment he needs. Three years ago, we, his family, feared he might never come back to us again, in any sense of the word.
Ms. Randye Kaye
So this night, perhaps ordinary to another family not facing schizophrenia, is a miracle. An ordinary miracle. Ben hugs me goodnight and goes back downstairs to take his medication, under the supervision of his stepdad. Another day has passed without relapse. Whew.
We know we are considered lucky by other families like ours right now – those whose loved ones are instead wandering homeless, in the hospital, in jail, or worse – dead. There is no guarantee of success in schizophrenia. But it is possible – especially if health care providers work in partnership not only with their patients, but also with the unpaid caregivers whose involvement can be a vital part of successful outcomes.
Caregivers have needs, too. When these needs are met, they 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 (aka the "physical burden" – like being home to supervise medication, providing transportation, helping with finances), and also the "emotional burden" of things like grief, fear, and worry. (Ninety-seven percent of the caregivers surveyed said they worry on a regular basis about their loved one with schizophrenia.)
Caring for 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. Seventy-nine percent 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.
Caregivers are often lonely. I remember feeling as if nobody understands what our family goes through (57% of those surveyed share those feelings), and wishing I could talk to someone who understands (79% have that same wish).
Despite all that, we want to help. Ninety-four percent of those surveyed said they try to maintain a positive outlook, and the survey also confirms that those caregivers who are satisfied with available support are more likely to feel grateful, content, and proud – and less likely to feel stressed, challenged, sad, overwhelmed, and frustrated.
Which set of emotions would you rather see in a family that can be part of the treatment team for your patient with schizophrenia?
In my book, "Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope" (Lanham, Md.:Rowman & Littlefield Publishers, 2011), I tell our story partly to help show what a family goes through as schizophrenia develops. If you can find empathy for the family experience, it will put you in a good position to see through the family you first meet (when they may be at the end of their rope, hanging by a thread) to the family who cares so much but doesn’t know what to do.
How can psychiatrists help the caregivers? 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.
• Support – Help them find it in places like NAMI (National Alliance on Mental Illness), Mental Health America, and the new website welivewithsz.com.