For years, he shouldered her illness alone
When Robert Dein’s wife was diagnosed with Parkinson's in 2002, she swore him to secrecy, insisting he tell no one, including their only child, a son then in his late 20s. When Barbara’s erratic behaviors turned to psychosis a decade later, Dein, a retired pathologist, continued to shoulder his wife’s illness alone, withholding the worst of her outbursts even from her doctors.
It nearly killed him. Or, more accurately, he nearly killed himself.
"I didn’t see any other way out," says Dein, 70, who decided taking his own life was the only way to escape the weight of caring for his wife 24/7. "It sounds selfish, but I wasn’t thinking anything but, ‘I have to get out of this place.’"
If Dein’s story is shocking, it’s also shockingly common. According to the Family Caregivers Alliance, of the 44 million people in this country who provide in-home, long-term care for an older family member with chronic illness — about 15 million of whom have dementia or Alzheimer's — 70 percent are depressed and one in four contemplate suicide. Caregivers between the ages of 66 and 96 have a 63 percent higher rate of mortality than non-caregivers, as well as higher risks for everything from cancer to immune system disorders.
And yet — for reasons that include financial constraints, guilt, pride, fear, stigma and spousal loyalty — they often don’t reach out for the respite care and emotional support that can be readily available.
For Dein, the moment of truth came after his wife’s delusions skyrocketed. No longer could they take the long boat trips they’d once enjoyed; now it was Barbara’s mind that was out to sea. She began hoarding, throwing objects, raging in the middle of the night, spouting wild tales, using sexually explicit language, accusing her husband of perfidy and weaving fantastical stories.
Still Dein, unaware that friends had begun calling him "Saint Bob," soldiered on. With Barbara always at his side and fiercely suspicious, he felt incapable of sharing her bizarre conduct with anyone. His wife made it clear that to do so would be the ultimate betrayal.
"In a way, I was afraid of her," he admits. "I was afraid of upsetting her. I was so concerned about protecting her dignity. I was dominated by guilt, innuendo and judgment. The inmates were running the asylum."
One night, after putting a glass of water and a Xanax next to the bed in case Barbara had an "episode," Dein went to bed. At 2 a.m. his wife awoke wild-eyed, bolted from bed and started flinging things around the room. When she knocked the proffered pill out of his hand, her husband reacted instinctively, throwing the water from the glass in her face. He was instantly immersed in shame and remorse.
"She was so shocked, I felt this big," he says, holding his thumb and forefinger a hair’s width apart. "We’d never had a confrontation. We’d never even argued. I was just so damn mad and frustrated."
In that moment, Dein decided the next day would be his last. He’d already formed a detailed plan.
"We had a boat. There was gas in it. It had two car-sized batteries," he says. "I could tie one to each ankle and take a swim. I’d go out in the Gulf deep enough to get the job done. The only question was whether to keep the motor running."
The next morning, he dropped Barbara at a commitment, waving goodbye and thinking, "She looks so small, so pathetic." Then he went home and sat, nearly catatonic, with the boat motor running. When the time came to pick Barbara up, he was still alive. But something had broken.
He took his wife to the hospital, where she was admitted for observation. When he arrived the next morning with flowers and the newspaper, she began raging again. As he wrapped her in a bear hug, over her shoulder he caught the eye of the doctor. "Baker Act?" the physician mouthed. Dein nodded yes.
"It had never crossed my mind to Baker Act her," he says of the legal mechanism that allows someone to be involuntarily retained for a psychiatric evaluation. "I couldn’t pull that string. But in that moment, there was no hesitation. It was like a safe off my back. Just this overwhelming relief that people who knew what they were doing would take over."
In the two years until his wife died, she would never return home. Dein put her in an assisted living facility, and then in a memory care unit. He remained attentive and solicitous, hoping for a forgiveness that never came.
"I always felt that she died thinking I didn’t do what I was supposed to do," he sighs. "I will always carry with me that I was the bad guy when she died."
The impossible choice that Bob Dein made that day — save his life or his wife’s? — changed him fundamentally. There are no more secrets.
"I would never have talked to someone about my frailties and shortcomings before," he says. "Now I don’t mind a bit. All of this stuff happened. I’m human. There is nothing to be ashamed of."
Hoping to help others caught in the same vise, he has joined the board of the Neuro Challenge Foundation and created a professorship at the University of Florida in his wife’s name. He is now engaged to a woman with whom he has much in common; Priscilla was a lifelong caretaker for the son she adopted at 2 but who died from complications of a brain tumor at 26.
"I was totally alone, by my own ignorance and stupidity, and I was suicidal," Dein says. "And as soon as I got help, I wasn’t. Instantly I had support. You have to realize it’s the other person who’s sick, not you. You need to do what’s right — for yourself and your loved one."
Contact columnist Carrie Seidman at 941-361-4834 or firstname.lastname@example.org. Follow her on Twitter @CarrieSeidman and Facebook at facebook.com/cseidman.