Becoming the Best Caregiver I Can Be

In 1988, my wife, Becky, was diagnosed with bipolar disorder. I’ve been her primary caregiver since we got married in 1994. Like many with bipolar disorder, Becky leads an ordinary life. She works, and she helps raise our two children. I’ve been alongside her for the rewarding times and the challenging moments that aren’t so ordinary.

I sat beside her on the floor of the laundry room while she sobbed uncontrollably because a friend rang the doorbell. I was with her when she admitted herself to inpatient treatment. I watched as she spent 20 hours a day in a flurry of manic activity.

I always say I’ve “been there” for my wife, but in one key way, I haven’t been there. No matter how much I care for her, no matter how much energy and effort I expend during the inevitable ups and downs, I can’t know exactly what she is feeling. This is a shortcoming that most caregivers struggle with. We can take care of our loved ones’ basic needs, but we can’t fully know their lived experience.

My wife and I do our best to communicate through this challenge; in the wake of manic and depressive episodes, Becky will often tell me what she was feeling and thinking. These are painful conversations for her, I am sure. But they help me to understand what she’s going through.

Still, I can’t really know what she’s thinking in the moment. I used to search for logic in her behavior during an episode, but I’ve learned to stop. It is hard to understand, for instance, what makes a person who hates having their photo taken, stop in the mall on a lark and pose for an expensive Glamour Shots session. Instead, I’ve learned what actions help her the most — and then we do them. Sometimes that means rest and sleep. Other times, an unscheduled trip to the doctor. Twice, it meant hospitalization.

Caring for a loved one with a mental health diagnosis requires a constant commitment and unrelenting strength. When I’m not providing direct care, I’m watching, observing, searching for subtle clues that my wife’s manic depression might devolve into an episode. The constant cycle of care and monitoring can be emotionally exhausting.

Luckily, we have had family members in relatively close proximity who we have always had on call if we need them, and at times Becky has traveled to her parents’ home when she felt fine, giving me the opportunity to sleep-in, read, watch sports or simply tackle long-delayed chores. That time has been precious to me because it afforded me a mental break and time to process. Ultimately, every caregiver needs a little self-care. Without it, I know I can’t provide the best care. I don’t ever want to let that happen, so providing myself with a little space to breathe is critical to making sure I’m Becky’s best advocate all the time.

Perhaps the biggest challenge in dealing with a mental health diagnosis is that no one has all the answers. Initially, the specifics of Becky’s diagnosis were foreign to me. I knew of depression, but I wasn’t even aware of bipolar disorder. There was a steep educational curve as I tried to get up-to-speed on the things Becky and her parents already knew well.

I started by going to her doctor’s appointments with her and listening — and asking lots of questions. I joined support groups for family members whose loved ones have a mental health diagnosis. I attended classes designed for caregivers. After more than 25 years of marriage, I’m still learning. I still ask questions of Becky, too. After all, she’s the best resource of all.

I’m not the perfect caregiver. I get frustrated at times. I lose my patience. I say the wrong things. But by throwing myself into this lifelong learning process, I’m much better able to help her when she needs it.

Johnny Whitfield is a former newspaper reporter and editor. For nearly 28 years, Johnny has served as the primary caregiver for his wife, who deals with a pernicious form of bipolar disorder. This piece originally ran as a 6-part series of articles titled “Outside Looking In.” It has been edited and reprinted with permission.