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— started to encroach on our lives. I’d slowly taken on the lion’s share of the yard work and got comfortable using a lawnmower in our hilly yard. Raking and bagging leaves became a form of meditation even as blisters developed on my hands. Lee would help until an asthma attack would send him back inside. Eventually, it got to the point where he wouldn’t try to help at all.as an isolated attack to cope with and move on from.
I stopped going into the office first thing in the morning and now wait until Lee gets through the worst of his morning fits. I work from home when I can and come home early when he’s having a particularly bad day. Nearly every night, I wake up to help him through an attack. Even if he can handle it himself, I keep my hand on his back where I can feel his heartbeat to confirm it’s still steady.
“I’m sorry,” Lee tells me frequently. “You didn’t sign up for this.” I tell him that there is no need to apologize; I know he would do the same for me. But it is also hard not to be resentful of each other sometimes: Me for the life we used to have and him for having to rely so heavily on his wife. I use my commute to the office to let these feelings out, to shout them in my car and to cry if I need to.
One of the most difficult parts about becoming a caregiver in my 30s is that it is so hard to find people my age who are going through the same thing. Many caregiver support services are directed at people who are much older, who had decades with their spouses before they had to take on this role.
What keeps us going is hope that things will get better. There are still treatments Lee is working with his doctors on trying and more research being done into his condition. We’re slowly replacing our physical hobbies with more stationary ones like cooking and gaming. When he wraps me in his arms to dance in the kitchen, I try to ignore the coughing fit that follows. We can still be us, even if his illness is there along with us. I just need to get better at remembering that.
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