Bob Linscott of the LGBT Aging Project asked me to write an essay on my caregiving experience with Sars for their monthly newsletter. It was an amazing task for a lot of reasons. Mostly because the gift of time has offered me the ability to look at my life with more objectivity and love- accepting the mistakes as well as the triumphs.
I felt a lot of things as I wrote. Mostly I felt grateful and, well- you'll see.
I have spent the last three plus years taking care of a man who was very dear to me. He was my parish priest as a kid, my confrere when I was ordained years later, a confidante and quiet supporter when I came out as a gay man and left the priesthood. He became an understanding and loving grandfather when I was diagnosed with HIV and very sick, inviting me to move in with him so we could "take care of each other." That is what we mostly did. I was cared for as much as I was the caregiver.
He died this past April.
His name was Sarsfield OSullivan (no apostrophe, "that's an English invention," he would say). He was Irish to the core. He was staunchly Catholic. He was Butte, Montana, through and through. He was, and remains, one of the most memorable and influential people life has ever brought me and I am grateful every day for the experience of sharing his life, right up to the end of it.
The compound word "caregiver" is a bit clumsy for me. I've never really thought of myself as a caregiver so much as a selfish soul who only wanted the best for my friend, even when I was too tired to give it, because it hurt me to see him suffer.
Sometimes I was good at keeping the suffering at bay; sometimes, I'm sure, I prolonged it. My humanity sometimes got in the way of my desire to be loving and kind. But I didn't give up. I got frustrated, but I never quit. It wasn't an option for me. I wasn't always proud of my behavior, however.
I remember last New Year's Eve. I had planned for a week to go out with some friends that night because I hadn't (literally) been out of the house for a week. I had arranged for a respite worker, but she couldn't come until an hour after I was to leave. We had discussed it, and Sars had agreed to go to bed a little early so he would be in a safe place for the hour. As I was ready to leave, he decided he wasn't going to do that. My evening plans disappeared before my eyes and I got angry. I was slamming drawers in the kitchen and stomping around the house and Sars said "What's wrong, love?" He had that Irish habit of using "love" for people close to him.
"What's wrong?" I said. "What's wrong is that I feel like a prisoner in this house. I had looked forward to spending a few hours out and you won't cooperate. That's what's wrong. I'm feeling like the parent of a spoiled kid."
His face fell, and I immediately knew I had made a mistake. I kept going anyway. He went to bed and I went out with my friends, even though I knew he just wanted to spend time with me.
I often wonder about my ability to give care when I can be so careless, but those careless moments were much less heavy on the scale than the loving and careful ones. Caregiving is about the acceptance of the blatantly and unmistakably human; it's taught me more about myself than I would have ever learned without having done it. The needs at the end of life or during a debilitating illness are remarkably simple: food, cleanliness, dignity, acceptance, comfort, rest, beauty and laughter. They're the same needs that I have. They're the same needs that we all have. It's just that when you're sick or elderly or dying a whole lot of distractions get swept away and the simplicity and preciousness of living can become so strongly felt and realized. Well, most of the time, anyway.
When I think of my friend Sarsfield OSullivan, I smile. I miss him every day. But now I know myself better. I know the world better. Despite the pain, the frustration and the sadness, despite the humanity of it all. I've become more compassionate, more caring, more aware of my own strengths, as well as my needs and limitations. I've become more real.
And I wouldn't have missed that for the world.