In their early years together she noticed that John, now 42, had trouble sticking with a career path and accepting responsibility. “It wasn’t that he was lazy,” she says, “but that he actually wouldn’t see or have the capacity to solve problems that were facing him in terms of day to day life management. He needed to follow a plan and if that didn’t work out, he’d be stymied as to what to do next despite his incredible intellect.”
Over time Rebecca learned to give John detailed instructions when she needed him to do chores or pick up groceries. She managed their finances. Taking charge wasn’t a huge issue for her, she says; she believed it was simply a compromise that partners make. “Without realizing it, we slipped into a pattern where I assumed most of the burdens of day to day life and that freed him up to get through his days,” she says.
But the couple’s “delicate balance” shifted with the birth of their first son in 1998. “John was suddenly faced with the responsibility of parenthood, and I wasn’t able to shoulder the load anymore.”
John often felt sad, lacked self-confidence and could easily have slept around the clock, he says. He suffered from frequent and debilitating migraine headaches and often felt anxious and irritable. He was hospitalized and diagnosed with depression.
John became worse under treatment, which often happens when bipolar disorder is misdiagnosed as unipolar depression. Rebecca noticed cycles, typically weeks at a time, when John would become sarcastic, grumpy and short-tempered. “This was not the man I knew,” she says.
The correct diagnosis finally came in 2002, after the birth of a second boy and another hospitalization: bipolar II with migraines.
John has been stable for the last couple of years, the result of five or six medicines he takes daily. They are working well, despite the occasional dosage adjustment. Individual therapy has helped him deal with some issues but not the bipolar symptoms themselves, he says.
John says that Rebecca “is as supportive as she can be without being saint-like.” When he needs to rest or be alone, for instance, she takes the kids out to play. The couple has learned how to channel the good times into his relationship with their boys. “We always made sure that when he was in a good place and had the energy he’d be with the kids — to show them that side of him and to build that relationship with him. When he was not in [a good] place, I was the barrier between them,” Rebecca says.
In hindsight Rebecca realizes she went through a grieving process for the man she first fell in love with. “It’s always hard to see someone you love suffering. But when that person is suffering mental illness, they disappear. Not only do you lose them, but the person you would have turned to is gone.”
She did not talk to a therapist until a series of family crises left her overwhelmed. She encourages others to seek help early. “You get so caught up in just holding your life together that taking time to look into getting support and giving yourself the time and permission is really hard.”
She also had to give up “the facade of normalcy” so that she could talk to others — therapists and friends alike — about her situation. “You have to understand that no one is failing or at fault; it’s simply an illness.”
An illness that affects the entire family. “In a strange way, I became secondarily bipolar. When John was in a bad place, I’d feel desolate. When he was better, I’d think, thank God, that’s behind us now.’ You take such joy and comfort and relief in periods of normalcy that it completely undermined my ability to cope when things got bad again.”
Now she knows “you can’t peg your happiness to your spouse’s health.” To avoid that, she has learned how to care for herself — reading, walking, talking to friends, focusing on the children. “I have not mastered this — I try to moderate my expectations and let myself enjoy the good times but never be unprepared for the bad.” That creates tension, she acknowledges, since “you’re always kind of waiting for the other shoe to drop.”
John has been going to graduate school full-time, earning a doctorate in speech pathology for the past four years. He takes the couple’s two sons to their hockey games and camping as often as he can. “The John I know and love has been back for a couple of years,” says Rebecca.
Now the two are redefining what partnership means for them. “For a long time I was the caregiver and he was the sick person. Those roles will never entirely go away but that’s not a basis for a happy, healthy marriage,” she says. “We have to define what I can expect from him and what the limitations are. Yes, he’s got this illness but t`hat doesn’t mean he gets off scot-free.”
|Listen to an interview with Rebecca and Suzanne Mintz about Caregiver Burnout|