Sunday, October 2, 2016

On Dying and Grieving and Judgment

My dad passed away this week. He was older than the hills: 93 and a half years old. I’m not sad about his passing; he lived a long and fulfilling life. But I am troubled by how he went, and our expectations around grief. At his 90th birthday party, he was jovially talking with old friends and extended family. He lived a quiet life with his wife in a beautiful care facility. I once likened him to a cat, sleeping much of the day, and happy just to watch the world out his window. We don’t need to be doing things to be content. But the past few years haven’t done him any favours. He had a commanding presence that gradually shrunk until he disappeared into the ether, cremated a block from his residence.

A couple weeks ago he got pneumonia. He was verbal and lucid, but didn’t recognize anybody accurately. Last Sunday I visited, and he was no longer saying words. He could just make sounds. His mouth was slack-jawed, but he would grin reflexively and wide-mouthed from time to time, with the unselfconscious extended gaze of an infant. When we walked in the room, he was sideways on the bed (they're not allowed to use waist restraints), completely uncovered, and wearing only a diaper. His body was skin and bones, riddled with age spots and moles. As we tried to cover him, he kept throwing the blankets off his tiny body. His nurse said she tried to put a dressing gown on him, but he kept pulling at it, so she left it off.

It reminded me of being in labour. My body was working hard and heating up, and my instinct was to tie my hair back and strip down naked regardless friends and family coming and going, oblivious to typical standards of decency. My focus was surviving the ordeal of birthing. I wasn’t thinking at all of the baby I was about to have, but about my own ability to live through the process. My clothes were simply in the way, every fibre a distraction making coping with the task at hand all the more difficult.

And it reminded me of every Christmas and Thanksgiving of my childhood, when the house was so full of family milling about, and there were so many pots on the stove cooking that the windows would weep condensate. My dad would start carving the turkey in the kitchen, fully dressed, but by time he was digging the last bits off the carcass, he’d have stripped down to his boxers in fits of swearing and chasing all of us kids out of the kitchen. He couldn’t do things with his clothes getting in the way. A former student once astutely remarked on the new trend of falling asleep with phones in hand: “We’re too lazy to get ourselves to sleep.” Going to sleep is an effort. I wonder if dying is similar.

Or maybe he was just hot.

So there he was in bed, sideways with his legs partially over the edge, working, like he was struggling to get through it all. His toes were curled under and his legs bending and pushing frenetically, arms flailing, looking for something to grasp on to, like a baby thrashing and kicking but failing to have any useful effect on his surroundings. The movements didn’t stop when he was sat up and then was repositioned in bed. It’s hard to watch frustration. He looked confused and scared and agitated. My sister and I each held a hand to comfort him the way I was taught to hold a newborn’s hands during the first couple diaper changes to help them feel safe and secure. It seemed to help a bit, slowing the thrashing down and keeping him steady, but soon enough the nurse came in with more morphine. We waited with him until he was calm enough to fall into a light sleep, and loosen his death grip on us, then we stole away home.



Relief from the pain of bearing witness to his plight was much stronger than my sense of guilt and cowardliness. They crept in to show themselves later, after it was too late. It would have been nice to be with him when he passed, but nobody knew how long it would take. As it was, he left us the following night.

And I wondered at the possibility of the nurse giving him just that much more morphine to make this end a little sooner and with us in the room at his side. His days had tipped the balance into far greater pains than pleasures, with no hope for any improvement. Is there a purpose or meaning to be garnered from these last days? The morphine suppressed his coughing, and he was barely drinking or eating. He was essentially dying of suffocation and dehydration, and it’s lucky he had the means to do it with the best possible care so his pain was minimized. But does a natural death trump a peaceful one?

This might seem morbid, but I regret that I didn’t take photos of his body, so foreign to anyone raised in a world sanitized of death. But it would have felt objectifying and disrespectful. There were instructions in place to take his body to the hospital for cremation immediately, so I knew I wouldn’t have another chance to marvel at what becomes of us, to, at my leisure, stare prolonged in wonder at photos of his curled feet and aged-marked back, the skin hanging from his legs, and the twisted and contorted postures of his final days. As it is, I already can't quite remember what he looked like at the end. I also wanted to make a plaster casting of my mother's face when she passed at home, but my siblings don't see art as the useful path to healing that I find it to be. It can help mark that moment of transition from one form to another. It allows us to redefine the situation on our own terms and turns the chaos of being into a thing of beauty. Maybe I should leave instructions or permissions for my own children, all of whom have a creative bent.

I recently re-wrote my will because I’m taking a trip, and I’m always pretty sure I’ll die any time I get on a plane. I have a pull-the-plug clause, but, after seeing my dad, I asked about including instructions in case I’m mentally unfit or incapable of communicating but clearly languishing. My lawyer clarified that advance directives like that can’t be included in a will because, according to the new law, the patient must be mentally competent at the time of an assisted suicide to agree to it. I understand that it prevents people from terminating the lives of anyone against their wishes, but, in cases like this, I can’t see the point of a natural death.

I’m projecting my own preferences here, but I’d rather be surrounded by family at a predetermined time, allow my children to say goodbye and hold my hand while I’m given an injection, than to have my kids rush to visit one last time, one at a time, some of them too late, and know that I died alone essentially of dehydration or suffocation. I can’t see any way that it was beneficial for my father to continue struggling and suffering. Is there something to gain from seeing the end come naturally? Do we have something to learn from it? Or is it just our belief in life at any cost that maintains laws to keep suffering people alive? The only argument that I’d give some leeway to is one based on the family’s faith or tradition. For the atheists among us, it seems absolutely barbaric, and most of us wouldn’t let our pets die like that. But I really have no right to say anything. I was negligent in visiting since he first moved more than walking distance away.

I was never very close to my dad; I always found him difficult to be around. We’re both introverts who were awkward together once my mom was no longer around to carry the conversation along. Even before that, he spent much of his time in his basement study reading and playing music at ungodly hours of the day. I kept books on the register in my bedroom to muffle the sound of his trumpet playing or his opera records, cranked to ten, jolting me awake before the sun was quite up. My bedroom faced a forest, and I looked forward to waking with the sun filtering through the trees, not the pitch blackness of his pre-dawn rituals.

Unlike most family rifts, we agreed on every fundamental issue. He was very progressive for someone of his generation, and he held feminist principles even if he might never have used that word. He had a strong sense of equity and justice and was extraordinarily sensitive to the plight of others. When we were kids, he would sometimes walk into the TV room and then storm back out, revolted by the violence we took for entertainment. It didn’t stop me from enjoying those kinds of films, but it did make me question my choices. He made me think about a lot of things along the way. He was a brilliant man, and I greatly admired him, but largely from a distance. We didn’t talk much at any point in our lives together beyond sharing knowledge. Before the internet, he was my go to for translating the odd word from Greek, Latin, or German. As a kid, he let me break a thermometer and poke the mercury with a toothpick on a disposable plate, and he let me play with a soldering iron and his power tools with minimal supervision. I made a maze for my pet mice and an outhouse for my Barbie dolls. We spent the summers camping, and he told us the names of the plants and the types of rocks surrounding us, and he could name most of the stars in the sky, too. He admired the experiments I set up labelling rose petals coated with any liquid I could find in the house to determine the liquid with the best moisturizing properties. He was always there when there was something to teach. But that was as far as we ever got.

Truth be told, he was an ornery bugger. He was neither gentle nor patient. He wanted to spend his days reading and thinking and playing music, but he was surrounded by noisy children thwarting his efforts. His frustrations with us were duly noted. I added “irascible spirit” to his obituary to ensure we acknowledge the man he really was rather than mourn a glorified version of him. None of my siblings objected. It’s important to bury the right person. I’m so thankful to family members who did all the dirty work. I’m glad he was comfortable and cared for, and that although I largely ignored my responsibilities, my negligence had little impact on the quality of his life.

And then I didn’t mention anything to my friends or colleagues until yesterday. How weird is that? I found out about it at work Tuesday morning, and I wrote the first draft of his obituary at lunch, surrounded by colleagues who would have been very supportive. Because I'm not sad about it all, I was worried that people would misread my behaviour. There seems to be a narrow range of acceptable reactions to death.

I didn’t want to take any time off work because it’s always more work and stress than it’s worth. Taking three days off from teaching would have required a full evening of preparing, and another day afterwards of cleaning up and catching up. And I wouldn’t grieve any differently at home alone. It was in the forefront of the mind the whole time, but I wasn’t teary-eyed at all. I felt like since I wasn’t behaving in a grieving fashion, it might draw suspicions that I must be coldhearted. I’m not repressing emotions or distracting myself with work, and it’s not that I’m not affected, but sometimes it just doesn’t come out like it does for most people.

Times of trauma and tragedy bring out a lot of projecting. People look at someone going through a death of a loved one, and they overlap their own feelings and responses onto the freshly grieving. Any behaviour that doesn’t match their own expressions is sometimes suspect. People watch people’s reactions at these times and make assumptions about their inner life. That’ll happen in retrospect anyway, once someone reads about it in the paper and shares the news, but my silence on it got me almost a week to process without a battery of questions and concerns about my decision to be at work while I was most vulnerable.

It gave me time to steel myself for any possible onslaught of whispered accusations of heartlessness or aloofness, or of just plain being weird. If they think it must be a hard time, and you're as happy as ever, that disconnect begs for a label. Even the kindest people can sometimes fall into the trap of judging others. I needed private time to process. I needed a week to get my head around it all before I had people sharing their condolences and looking at me with sympathy, quickly followed by disdain. As soon as people know you’re going through something difficult, they pay more attention to you in a way that can be oppressive. Well-meaning people can feel intrusive sometimes, and I wasn’t ready to deal with that just yet.

And although I’m affected by it, it’s just not that sad to me. He had lived a really long, fulfilling life. This was a good death in that respect. I’m not beside myself weeping because it was long expected. I am still grieving a colleague who took his own life almost a year ago. That one haunts me, and I can't get over the guilt of not doing more; I'm sometimes ill with remorse. But my dad went when he should.

When my mother died, twenty years ago, we all expected him to go quickly after. They were a couple so united that it seemed impossible for one to live without the other. When students say that being raised with divorced parents makes it unlikely they’ll have a good marriage, I counter it that I was raised watching an intensely happy marriage, which totally ruined my chances at a relationship. Nothing could live up to that ideal. Yet after she died, he quickly re-married and moved and had a whole other life. Life's full of surprises like that.

So it goes.

So bring on the dancing girls!  (My dad's common refrain after an especially good meal.)

My Uncle Jack and My Dad

ETA: The University of Waterloo's Daily Bulletin obituary.

9 comments:

The Mound of Sound said...

My sympathies, Marie. You have said so many things others, including yours truly, would confine to ourselves. At my father's funeral I caught myself glancing at my brothers and realized I was trying to figure out what his death really meant to them. Death is a mystery that most of us experience in brief moments at extended intervals.

Marie Snyder said...

Thanks, Mound.

Susan Danic said...

Marie, eloquent as always. IMHO, our medical system has done far too much to prolong life. Quality matters. My Dad is in pain most days, sleeps 90% of the time, and complains when he's awake. Yet, a new heart valve was put in and "so it goes."

Your concerns about a "natural" death are so important.
Sue D

Susan Danic said...

Marie, eloquent as always.

I don't understand our mania for a "natural" death either, and grieving is so personal. Let people do what they need to do.

I also think modern technology has made it far too easy to prolong life, but at what cost? My dad is miserable - sleeps most of the time, and in pain when he's awake. Yet they gave him a new heart valve 2 years ago. Why? He was in this much pain two years ago, so nothing has improved, but he goes on. So it goes, indeed.

Marie Snyder said...

It's a tricky decision when people get to a certain age. It's hard to say you don't want the surgery that can help you live longer even when you're in your 80s and 90s, even if the quality of life you'll end up with is seriously lacking.

Unknown said...

Marie - thanks for your reflection! I don't find time to read much, but I really enjoy reading your blog when I stumble up on the link on FB. Thanks for sharing your experiences & please know that I will be thinking of you (& our other colleagues who have lost parents this past week).
~Sheri Stover

karen said...

My condolences, Marie. This is really beautiful about your dad, honest, but loving.
I, too, am distressed about the way we go about dying. I expressed sentiments much like yours to my daughter and she was aghast at the notion of "putting me down," as she called it.
And, I really appreciate your words about the ways we grieve. I tend to be one of those too helpful types. It's good to be reminded to let people be sometimes.

Marie Snyder said...

Yes, it's been a really bad week for losing parents at KCI. Many of us are hitting that age all at once.

Marie Snyder said...

It's curious that we want to stop our pets from suffering, but humans have to have the longest life possible. I shared this post with my two oldest kids. They've got my back. But I hope it's made legal for someone in my dad's condition before I need it (or anyone else needs it for that matter).