Regrets. Or Lessons?

Over the last week or so, I’ve been trying to write down everything I remember about last year, without referring to notes or old blog posts. I’m finding the process of remembering to be helpful, to some degree - I don’t think anyone knows (or at least shares my same viewpoint) on what I experienced. Caregiving, ultimately, is a very personal experience, I think, as is terminal illness. Writing about what I remember seems cathartic.

In this process, I am realizing that I have had a number of regrets about some of the things we did during Sami’s illness - as well as some of the things we didn’t get to do. I wish we’d gone to the ocean one more time. I wish we’d have gone to a concert - we both loved live music. Basically, I wish we’d had more time together.

In the process of writing down my memories, I recalled a day last spring (late April or early May) when we had ordered a hay delivery. After I fell off a stack of straw in 2007 or 2008 (and broke both of my arms), Sami took over most of the hay-stacking responsibilities. I’ve always hated heights; breaking both arms made my acrophobia more intense. I think Sami liked stacking hay, just like I like splitting and stacking wood - the combination of physical activity and obvious accomplishment (who doesn’t like seeing a full barn or a full woodshed) made her happy. Stacking hay, for both of us, confirmed her physical strength, as well.

The night before the hay was supposed to arrive, we (Emma, Lara, and I) realized Sami wasn’t in the house. I noticed the barn door was open, and went out to investigate. Sami was rearranging the hay to make room for the delivery - as I recall, I found her standing atop of a stack four bales high.

I should back up. On the Saturday before Easter 2023 (and before I found Sami stacking hay), we drove to Sonora to celebrate with my family. Sami was about two weeks into her 6-week chemo/radiation treatment, and hadn’t had any serious side effects yet. When we arrived at my folks place, I noticed Sami’s hands were trembling. As we greeted family and walked towards the house, I realized Sami was having a seizure (the first she’d had since her surgeries). She recovered reasonably quickly, but I think we all (Sami included) were sobered by the experience. And worried.

So on the day I found her stacking hay, I was angry. I scolded her. I probably yelled something like “What the HELL are you doing?!” Which I regretted instantly. Which I still regret today.

But hindsight has started to turn my regret into enlightenment. Last May, I was hopeful that treatment would buy us more time together. Today, I’m realizing that none of us - sick or healthy - know with any certainty how much time we might have together.

My regret is that I didn’t simply pitch in and help Sami rearrange the hay. I wish (now) that I’d realized how happy Sami was doing something that she’d always been able to do. I wish (now) that I’d realized that falling off a 4-bale stack wasn’t the worst thing that could (or would) happen to Sami.

Which brings me to the lesson I’m trying to learn. My anger with Sami, I think, was more about my needs than hers. I wasn’t ready to let her go (I’m still not, I suppose). That said, she needed to feel in control, to feel useful. As one of her caregivers, I could have given her that gift. I can’t go back and give that to her tonight, but I can share what I think I’ve learned. Doing something that we love, something that gives our lives purpose or meaning (even as “simple” as stacking hay), is important. Supporting our loved ones, when they are doing something that gives their lives purpose or meaning, is equally (if not more) important.