In all the reading, listening, and reflecting I’ve done on grief, I’ve found that it is typical to feel regret when someone dies. Folks often wish they had spent more time with the person who died, or been more patient, or approached a particular situation with them differently. I am lucky to feel relatively little of this, in part because the fact that Tom’s recovery took place during the pandemic meant that I was home with him and we were together nearly 24/7 for the entirety of the time between his stroke and death. It simply isn’t possible for me to have spent more time with him. I also am at peace with the caregiving I gave him, feeling very proud of the high level of care I was able to give.

There is one regret I find coming up with this new wave of grief I am experiencing: wishing I had responded differently to his pain. He was in constant pain. One particularly cruel aspect of his paralysis is that although he couldn’t control his left side, he could still feel intense pain in it. His left leg and arm were always painful in some way. Simply brushing against his left arm would cause him to wince violently. His left leg was wracked by excruciating muscle and nerve spasms. He also had headaches from both the stroke and his multiple skull surgeries, and pain in his right knee because his right leg had to work so hard to bear weight that his right leg couldn’t handle during PT sessions and the brief periods when he walked. His leg brace caused chafing all along his lower left leg and foot. He regularly experienced nausea and indigestion as side effects of his 14+ medications. On top of all that, he had sinus issues and a bit of arthritis, neither of which had anything to do with this stroke, but just piled aches and nuisance discomfort on top.

It simply wasn’t possible to medicate all that pain away and although he seldom complained, it was apparent that he was always in pain. He moved gingerly or sucked in his breath if I jostled his left arm or leg or withdrew into quiet resignation. It was hard to watch.

My typical response took two forms: One was to try to fix it. I badgered his doctors about pain relief medications and spent endless hours research non-medical treatments online. The other response was to try to control Tom’s reactions to his pain, making suggestions about what he should do or offering to make him some tea; sometimes those suggestions and offers veered into nagging territory. That would sometimes led to us bickering about the best way to deal with his pain. The most difficult arguments occurred when we bumped up against the cognitive changes Tom experienced after his stroke—sometimes he didn’t understand the logic connecting some medications to particular types of pain relief, for example, or he didn’t remember that some of his pain was caused by his brain even though he felt it in a limb. I would get frustrated and fixate on making him understand the logic, even drawing diagrams on a whiteboard.

In hindsight, I realize Tom knew I couldn’t fix his pain and what he probably really wanted was just for me to say, “I know, it totally sucks,” and sit quietly with him in empathy. At the time, that felt like “doing nothing.” I realize now, though, that the approach I took actually created distance between us and probably made Tom feel like he was dealing with both pain and a grouchy wife.

That is where my regret is: that in trying to help him, I actually added to his suffering and hindered intimacy and empathy. I’m not wrapped up in telling myself I “should” have behaved differently. I am giving myself grace and recognizing that I did do the very best I could under challenging circumstances. I am focused on learning from the insight I now have about my behavior and in using it to help me move forward.

In a Doug Kraft lecture I listened to this week on “fluidity of life,” Kraft suggests that one cause of suffering is the compulsion to “leap into trying to fix” things. He says, “Imagine an awareness that is deeply engaged and yet so loving that it has no need to control, change, or fix anything.” I connected this exercise immediately to my regret about how I responded to Tom’s pain. I wish I had allowed myself to put the energy that went into trying to fix Tom’s pain or control his reaction to it into simply being lovingly engaged.  

I know I did the best I could in the moment. But I am taking this hindsight and working to apply it to my grieving. I am not trying to fix or change or control my grieving. I am “Imagin[ing] an awareness [of my grieving] that is deeply engaged and yet so loving that it has no need to control, change, or fix anything.” Here’s what that looks like right now:

• Just as I tried to make Tom understand logics that were beyond him, I notice myself trying to reason my way out of grieving at some moments, thinking, “There’s no logical reason for you to feel sad at this moment.” When I catch myself doing that, I shift my thinking to just noticing that I am sad in the moment.
• Refraining from apologizing when I start crying or getting emotional during interactions with others. I try to make an explanatory statement instead, like, “My grief has been sneaking up on me lately and here it is again.”
• Not trying to distract myself at all when grief hits and really sinking into it. It feels good, actually, to miss him intensely and to just let myself feel the pain of him being gone, to not deny how profoundly shitty it is that he died, and to acknowledge that grief is demanding my attention.