ingrid blaufarb hughes

Lois talks sadly about her older brother, Allen, a man now in his sixties who has lived most of his life with schizophrenia. Since their father’s death, she has taken responsibility for seeing that he has a roof over his head and basic necessities.

How does your brother’s illness affect you? I ask her.

I feel burdened, embarrassed, worried, depressed. Sometimes compassionate.

Burdened: Allen’s illness prevents him from working and makes it hard for him to stay in one place for long. Over the years he moved from one apartment to another within NYC, till he ended up in a city shelter. But then “they didn’t want him any more.” The shelter recommended him for alternative housing, which he rejected, instead moving in with Lois and Allen’s elderly father. “I was heartbroken for my father,” she tells me. “My stepmother felt she couldn’t live with my brother and separated from my father.” After his death, Lois found Allen a place in a boarding house in a town near hers. There too, after a while, “they didn’t want him.” This time she found him an apartment of his own, where she visits him each week, to see how he’s doing and what he needs, perhaps take out the garbage, and trying to reduce the collection of things he hoards. His housekeeping is complicated by his idiosyncratic way of following Jewish law, which sometimes requires a stretch of several days in a week during which he follows the rule not to work on the Sabbath. As a result he can’t turn lights or the stove off or on, or wash dishes or take out the trash. Once when she threw out his hoard of bottles and bottle caps, he accused her of doing him out of as much as $40,000 in potential winnings from bottle cap prizes.

Lois is also burdened by her commitment to cover Allen’s expenses, since the Supplemental Security Insurance he receives just about covers his rent. She has reached an age when many people retire, and in fact did retire, and then returned to work in order to provide for Allen.

What is Allen like? I ask her.

He’s tall and thin and looks like a homeless person. Disheveled. He doesn’t make much eye contact, and he’s argumentative. Not violent, in fact gentle, but insistent on being right. He brings things he’s bought back to the supermarket, explaining at length that the product didn’t do what the label said it would.

What do you want people to know about mental illness? I ask Lois.

“It’s expensive. It’s emotionally draining. It can destroy a family, the way it broke up my father and stepmother. I’m alone with the burden of my brother. My husband doesn’t help me. But I have one friend who’s in the same situation, dealing with a relative with a mental illness, and she’s the one I share with.”

Allen now and then reaches out to one family member or another, sending a card or even a gift. But Lois doesn’t want to burden her family by inviting him to her house. Though she believes her grown children might be willing to be with him, her husband would not. “He doesn’t give me much support in this,” she says. He feels that life is hard enough without adding in someone with a mental illness. In addition, Lois feels that if she invited her brother to visit, the contrast between her comfortable family and his lonely and difficult life would him envious, and would perhaps make her uneasy.

When I ask Lois why she has taken on the complex responsibilities of looking after her brother, she says, “It would make my father proud.”