There are multiple stories that you can tell about the death of my parents. There’s the one where we learned from all the things we did wrong with my mom and my dad’s death was still a shit show. There’s the one about watching someone you love slowly starve to death because we don’t believe in euthanasia for humans. There’s the story about how the healthcare system utterly failed us because it’s capitalist and decentralized and while every person you meet seems to care, the system, whatever that is, doesn’t care at all. There’s the story of knowing too much and not knowing what you need to, ever.
My mom had ALS and my dad had a stroke, a couple actually. The first one was cortical, one side down but enough stubbornness to make up for it. He lived at home for almost 12 years with my sister and nephew. He chain smoked, drank Mountain Dew, and kept an eye on Buckhead. He was a most loveable bastard. He was proud of me. He was sad I wasn’t around more, and I avoided the whole thing because of their house and my sister and the constant smell of cigarette smoke that gave me a headache. Because he was abusive when we were kids and I’m afraid of all the ways he fucked me up that I don’t even know about and I felt like I didn’t owe him my life. But mostly because of guilt. I wanted to help and I couldn’t because you can’t control people and my family constantly makes choices I neither understand nor approve of. My sister says I’m judgmental, to which I say, in internet parlance, *shrug*. This always bothered me until my therapist asked me if I could perhaps own that, reframe it, judge away and act accordingly. It’s a thought to try out for sure.
Last week I went to work, stupidly. I have no idea why I thought that was important while my dad was dying, but we do dumb weird stuff with our time and our moments and we don’t know it’s dumb until later. Hindsight’s 20/20, etc. I had two patients who came for swallow studies, someone with ALS and someone with a stroke. They both reminded me of my parents and I hope I helped them. I have been having nightmares that highlight my worsening fear that we can’t really help anyone, no matter how much we try. That I can’t, specifically.
My dad’s hand has a slight curl to it. It’s natural tone but if you hold his hand and pull against the fingers in just the right way, it feels like he’s holding your hand back. Sometimes he opens his eyes and it almost feels like he sees me. His expression is hard and I hope he’s not thinking that we are punishing him, that we don’t care about his suffering. I find it hard to care about anything else.
I’ve been thinking about the people here. The nurses and techs and doctors who do seem to care. Who clean him up and wash his face and replenish the dripping morphine that lets him rest a little. The faces that have seen this before and will see it again and who look at me with sympathy when I come and go. I think of the things they have done that are kind and the things they have said that are unintentionally insensitive. I think of the times I’ve said those things to patients, and I wonder if they wanted to kick me too. I wonder if I’ll be able to go back to work and not say those well-meaning things to other people.
My dad is dying because he had a stroke that took away his speech and his swallowing. At first he didn’t swallow, and then he’d gulp and cough and choke, drowning in his own saliva. He used to talk, a lot. It didn’t make sense because he had aphasia, but he had tone and could convey curiosity, annoyance, anger, confusion, pain, and love just as easily as before. Now he has only an open-mouthed moan that sounds like anguish and frustration. It was purposeful, but sometimes now he wakes up coughing, a deep gurgling in his chest that he can’t clear, and he makes the sound involuntarily as his body tries to relax back into sleep. I am glad that some people get a peaceful passing, but I see too much pain here.
His doctor, someone I know from work, says that he can’t really feel it. That he’s in as much of a coma as if his eyes were always closed. I hope so. I have also never hoped for an afterlife, dedicated little atheist that I am, but I hope now. I hope he gets to be free and that he understands that we tried our best: that we honored his wishes and that we saved him from a life of being bedbound with a feeding tube in a nursing home unable to communicate or understand what was happening.
Being here with him feels like a joy and a penance. If you make the decision, he has to die with it and we have to live with it. Watching him struggle now is how I pay for all the time I avoided the whole thing. It’s how I can say, I love you, I’m here, I see you, you deserved better from life and death.
