I first learned about what I call the lanes of parental caregiving when I was 35. That’s when my mother was diagnosed with stage IV ovarian cancer. At that point, I was in the “fast lane.” I was her sole caregiver, going to every doctor’s visit, taking notes and navigating her care. But I couldn’t save her. She succumbed exactly one year from the day of her diagnosis. I am now the same age my mother was when she died—61.
While I was in the fast lane of caregiving, my husband was in the lane right next to me—the lane reserved for the spouses and partners of a person on the road to the long goodbye. I wouldn’t have been able to care for my mother or our two small children or do my job without my husband standing at the ready—always in his lane. Where would I have been if he weren’t there giving baths, combing hair, cooking meals, and wiping noses, while he also held down a full-time job of his own? But he didn’t directly care for my mother, though, in the end, he would be the one to carry her down the stairs so she could sit on the porch and get some sun on her face—all the while with tears in his eyes.
Now, years later, our roles are reversed. My husband’s 85-year-old mother, a widow, has stage IV breast cancer. He is now in the fast lane, caregiving-wise, doing the things that only he can do, like dealing with her doctors, coping with the latest emergency, and talking with his siblings about what’s next. Meanwhile, I stay in my lane, which is slower and steadier. Together, we spend a lot of time talking about what I can do for him while he tends to her. I’m not in charge of anything or anyone. If he asks me to make a call, I do it. If he wants me to listen in on a doctor’s consultation and interpret the medical jargon, I do it. The arrangement works because we understand our roles.
As my mother-in-law becomes frailer, I see my husband through the lens of fragility, as well.
In truth, the most valuable thing I can give my husband is the one thing I wish someone had given me when my mother was sick—a verbal check in, a quiet Are you OK? He couldn’t do that for me back then, because his lane was jam-packed with taking care of all of us. Or maybe, because it was our first time going through this, and I was being so stoic, he didn’t know what I needed to hear, as I constantly swerved and veered off course from lack of sleep, panic and the knowledge that no matter what I did, my mother wasn’t going to make it.
Years later, my lane isn’t as crowded; our children are grown, so I can concentrate on my husband and his emotions. Every day, sometimes three times a day, I ask, “Are you OK?” And he knows I really want to know. Often, we hold hands without speaking from across our lanes, riding in tandem for a few moments in time.
Not that it’s always easy for me to stay in my lane. I’m kind of bossy, and I find myself wanting to “fix” things, or give advice. Instead, in the slow lane, I am forced to do a lot of listening and watching. Being in this position is teaching me that I cannot triage everything, nor do I have to.
I am also learning about journeys. The journey that my husband is going through with his family is very complex, but none of it is about me, and I don’t get in the middle of it. Instead, I pick up on the cues I know from 35 years of marriage, like when my husband simply can’t talk about what’s ahead anymore, which sometimes occurs mid-sentence. Or when he starts moving things around in whatever room I happen to be in because he wants me to put down what I’m doing and focus on him. Or when he asks me to cook something that his mother made, just the way she made it because he needs to be reminded.
My role in the slow caregiving lane is simple, yet difficult. I only ask, “How can I help you?,” a question that covers a lot of ground. Of course, I could guess at what my husband needs and just do it, but crossing over into his lane is much like veering into oncoming traffic without headlights. Recently, he wanted information on hospice versus assisted living, which was well within my lane. But when I told him I’d called to see how soon we could start hospice if we needed it, it became a thing. “Why are you throwing in the towel on her?” he said and mayhem ensued.
After my mother died, I became a health and medical journalist partly to make sense of it. You’d think that the knowledge I’ve gained in my profession would be helpful for my husband and his siblings. But I’ve learned that nobody really wants to know what I know. I am the messenger of everything they don’t want to hear. Sometimes, though, my husband will ask the big questions: How long? What comes next?
My answers are measured—a bit of this, a pinch of that. Does he really want to know what the science says, or does he just want to give voice to the scary things he is thinking? “How does she look to you?” he asks. I reply, “How does she look to you?” He thinks for a minute and starts to cry. I am as helpless as I was before, when I was watching my mother go. The fact that I have had first-hand experience caring for a terminally ill parent is of no comfort to us now.
As my mother-in-law becomes frailer, I see my husband through the lens of fragility, as well. From my lane, I see him watching his first rock and anchor slip away from him, just as I saw mine disappear. Sometimes, I think that our experiences caring for my mother when we were a young couple may have prepared him to step into this new lane, and me into mine. Other times, I know for sure that there is no real handbook when the person succumbing is your parent. A part of parental caregiving is watching your heart break into a million pieces. It breaks for my mother-in-law, but for my husband, it bursts open every single day.
Andrea King Collier is an award-winning multimedia journalist and author of Still With Me… A Daughter’s Journey of Love and Loss and The Black Woman’s Guide to Black Men’s Health. She and her husband have been married for over 35 years.
