I spend a lot of time thinking about hospice care these days.
As my husband’s health declined it was as if we could hear the clock ticking more loudly. All the plans we’d made for growing old, the life we’d imagined, was not going to happen.
If our lives were a movie, we’d be going bungie jumping right now. Unfortunately, not all of us will be healthy enough to travel the world and live it up until our last days. My husband’s decline was slow at first and has sped up more recently. He can barely muster up the energy for doctor’s visits. The places we have not yet visited and the things we have not yet done will not be done. That door has closed already, while we were too busy with work and kids and everything else. The opportunity slipped away without us even noticing it.
Now I meet with the hospice nurses. We talk about ways to keep him comfortable. But they’re exceptionally kind and want more than simply managing his pain. They ask me questions about him. They ask him, too, sometimes when we’re together, sometimes when we’re alone.
What is it that makes him ‘him’? What gives his life meaning?
And then they think of ways to keep those threads alive. He can’t do what he used to do, but they come up with creative solutions so he can still participate in his life as best he can. We take him on excursions, carefully planned and modified to allow him to enjoy these final days.
He does not have to lie there in this hospital bed set up in our dining room and wait for death. He’s spending that time doing the things he enjoys, be they meaningful talks, beloved activities, or just playing video games with our sons.
It’s made me question what I’ve been doing these past few years. Because while I can answer these questions for my husband — what makes him ‘him’, what gives his life meaning — I can’t answer them for myself anymore.
Who am I? I’m a wife and a mother. My whole life revolves around other people. It did long before he got sick. I’m not sure my life ever revolved around me, but once I got married and the boys followed soon after, I stopped even considering myself.
I knew it when they were little and they’d ask me silly questions. What’s my favorite color? What’s my favorite hobby? I have no idea. But those things stopped mattering when I left elementary school, so I didn’t think much of it. Kids are so obsessed with favorites.
My husband doesn’t have a favorite color, either, but he has hobbies he’s passionate about. He’s always had friends with ties beyond a shared property line, the proximity of their desks, or the age of their children. He’s had interests that I know only the faintest things about. My life has always just revolved around him and the boys. I know all of their wants and hopes and dreams, but I don’t know my own.
The thing is, my husband has been a great husband and a wonderful father. He doesn’t love the boys any less than I do. But he kept himself while raising them. I lost myself along the way.
Soon I’ll be a single mom. I want the boys to have a parent who’s a full person, not just a vessel for them. How will I go on after my husband’s death if I don’t even know who I am?
As my husband tries to enjoy his last days with us as a family, I’m trying to find myself.