I’m honoured to have been asked to read a couple of my poems tomorrow at the Local Health Integration Network’s (LHIN) “Death Café.” It’s an opportunity to creatively open up a discussion about end-of-life planning and palliative care. This isn’t a popular conversation, but it’s one that people need to have within their own families. It was (and is still) an area that holds my heart tightly in its grip. I’ve written about my parents on this blog before, but I haven’t spoken too much about their endings, which were difficult to say the least. When I joined the Health Sciences North (HSN) Patient and Family Advisory Council (PFAC) a few years ago, just after my father had died, I knew I had a keen interest in making life better for the frail elderly in our community. Those without dutiful daughters are lost in the health care system and it makes me so angry on their behalf. The other area I had an interest in was palliative care, especially in terms of hoping to bring art into that particular ward at HSN. While on the PFAC, I was more successful in moving forward with issues to do with speaking out for the frail elderly, and the palliative care aspect didn’t really get off the ground.
In seemingly unrelated news, I’ve recently been named as the new Poet Laureate for the City of Greater Sudbury. I’m the fourth one, and the first woman, which is a real honour for me. As part of my new role, I can do interesting things with causes I believe in highlighting. To me, poetry is both personal and political. This is a feminist approach, I know, but it’s even more so a human approach to poetry as it can serve as a sort of social justice piece in our community. Poetry isn’t just a bunch of words collected on a page, or spoken in performance, but rather a way in which we can speak to things in society that we wish to change. (Writers have done this for eons, so it shouldn’t be too shocking!) One of the areas I hope to delve into is to explore how poetry can work within the ‘countries’ of palliative care and mental health. So, when I was invited by Lara Bradley (of our local LHIN) to take part, I was thrilled to bits. Here is a way in which a simple poet can speak to a cause she cares deeply about.
“Death Cafés” started in the United Kingdom in September 2011. In just four and a half years, over 3,027 “Death Cafés” have been offered around the world. And now, we’re having one in Sudbury. Tomorrow, from 2-4pm at The Buddha, people will gather to hear a few poems, and to speak about death. Why? I can tell you why, from my own experience.
My parents fell ill when I was in my early 30s. I had just begun my teaching career. First, my dad had a heart attack in fall 2001, and then I helped my mother with his recovery after his heart bypass surgery in early 2002. Then, she began to struggle with her health, just as his faltered. They dovetailed each other, in terms of their descent from not-so-great health to their respective endings. They ate too much, drank too much, and didn’t exercise. She smoked, from the age of sixteen forwards, so I know that’s why her end was so awful and medieval. Her body, her lungs, were calcified from the inside out. When they told me that, as she lay dying, I remember thinking of her lungs as what pieces of sea coral must look like…or maybe driftwood in an ocean surf next to a shoreline.
My parents were too sedentary and my mother, in particular, really didn’t cultivate friendships. She was solitary and often spoke of her home as a ‘safe place.’ She only really wanted to be around people in our family. It was a closed sort of family, and, to be honest now, very dysfunctional. (Therapy lets you learn all of these things about your own historical patterns, even when you don’t want to go there). Anyway, her health continued to falter until her heart attack in 2004. She also had heart by-pass surgery, so I helped her with her recovery. Then, in late 2007, she had issues with her circulation. It ended up that she had peripheral artery disease (PAD) and a small issue with her right foot looked, initially, like a simple case of gout. She wasn’t diabetic. By April 2008, she was diagnosed as having gangrene and part of her right foot was amputated at the metatarsal level. She was bedridden until her death in December of that same year. (I was off with major depression, a lot of which I can now see was directly tied to being her main caregiver.) There were battles for home care, endless streams of calls to CCAC, fighting for her to try and encourage her to fight and rally (even when she was obviously exhausted and giving up). That year made me lose my mind. Suicidal ideation was common. I was at my wit’s end.
She went into hospital via ambulance on the morning of Dec 11, 2008, because her breathing had worsened and I knew we were in trouble. She didn’t want to go and I remember she was so angry with me for calling that ambulance. (I think she knew she was dying and just wanted to die at home.) Within days, she was in a coma. She was in a regular hospital room, until she was moved, finally, to palliative care. The hospital was under renovation at the time, so they took us through a horrible main hospital hallway, with too many people just openly staring at her as we went. She was in a coma and breathing horribly, on a stretcher, and I remember that I so wanted to yell at everyone we passed, “Stop fucking staring. She’s my mother and she’s dying.” And, I remember, too, that I just wanted to drape myself physically over her, on the stretcher, to protect her so that she wouldn’t have to be stared at with pity. She would have hated that, that lack of dignity and privacy). She was moved to palliative care in the late afternoon of the 18th.
I actually think she died, briefly, when they shifted her into her palliative care bed in that wretched North Tower. I remember the nurses whispering behind the curtain, a rustle of bedclothes, and the silence. They were trying to find her pulse, I think. Then, one nurse swept out from behind the drapes, came over to me, and said, quickly. “You need to call whomever you want to be here. She is not going to be here much longer.” So I did. I was alone with her that afternoon as my sister had taken my dad home to have a shower and a bit of a rest. We three had been at the hospital for four days, so he needed that break. Calling home, then, was the hardest thing I had to do, worrying that he would not manage losing her, having to tell him on the phone that Mum was not long for this world. They came back, and my aunt Cathy came later as well, just to say a quick goodbye and leave the three of us with her, and Mum died about three hours later. She had oxygen forced into her lungs through a mask, something which still bothers me. She had, the night before, spoken to unseen people, asked to be ‘lifted up,’ and tried to get out of her bed, with a physical force I couldn’t quite believe as she had disappeared to a skeletal and pale version of her former self. I remember her voice being water logged, literally, as she tried to speak, without making any sense, drifting in and out of that damned final coma, and then us trying to get her wedding ring off her finger, which became an awful race to cut it off because of the swelling due to her heart congestion and failure. The only reason I’m writing this, now, in such detail, on this blog, is just so you can see how awful death can actually be. It isn’t a Hollywood movie. It’s much more brutal.
My dad’s story is horrible as well. They both tested me, in their going. Seven months after she died, in August 2009, he went on a fishing trip with a friend. He fell, hit his head, and became a complex quadriplegic. What followed then was a comedy of errors. Airlifted to Michigan because there weren’t beds in Ontario, then trying to get him home two weeks later, and then him saying he wanted to kill himself because he felt lost without his mobility. He was shifted from HSN to Lyndhurst, in Toronto. He saw Lyndhurst as a place where he could — he thought — maybe walk again. My sister and I tried to tell him, gently (but how gently can you tell someone you love this?), that he would be a quadriplegic until he died. What followed that was a return to Sudbury, to the hospital, and then to St. Joseph’s Continuing Care Centre (where there was a physio program), and then to Pioneer Manor. He lived for twenty-seven more months, until he had another major heart attack in Oct 2011. That night, I sat with him while the doctor in emergency told me he was not going to make it through the night. My sister was working for a beer company at the time, so I had to call her home from her sales calls in Muskoka, so she drove through the darkness to be there. He lived, though, despite the heart attack and double pneumonia. From that point on, though, until Nov 11th, he declined. On Remembrance Day, they declared him palliative, and we spent the next six weeks with him in the palliative care ward. He had the best care there. Really, in comparison to my mother’s death process, his was full of light and love. He lit up the world on that little ward. He became ‘my little Buddha,’ spending hours telling me his thoughts about life, love, and loss. I feel blessed, now, that he and I shared that time together. I remember thinking then that it was so sacred.
There were other parts of his last six weeks that were not so nice, though. He could often get quite agitated, would berate me and call me names. (I won’t write them here….but they weren’t nice names…and I know he would be sad he’d said them so meanly to me, if he’d been in his right mind, but he wasn’t, and I love him still, so all is forgiven.) The nurses told me that dying people often attack those who are closest. One night, I lost it and yelled back at him, “Why are you calling me that name? I’ve taken care of you. Don’t do that to me now…as you’re dying. Don’t let that be one of the last things you say to me, what you leave me with.” It was ridiculous, and it did no good. He cursed at me again and I ended up in the hall, sliding down to the base of a wall and weeping silently. I know he didn’t mean it. I know that death isn’t kind. I’ve seen it. It robs you of dignity more often than not, sadly, and I know, too, that this is why I feel so strongly about why we need to advocate for end-of-life care and palliative care. The health care system needs a revision, too, in terms of how it deals with the dying and their loved ones. There are too many awful things that can be prevented, from the inside out. People deserve dignity in death. It’s a part of life. Sometimes, we need to fight for that dignity for our own loved ones, and it can be a hard, exhausting road if you haven’t been on it before.
I haven’t written about this in such detail before. It’s hard. It’ll be hard, too, tomorrow, when I read the poems I wrote as both Mum and Dad were dying. They aren’t the best poems I’ve ever written, but they are real and reflect what I was experiencing through their dying processes. It’s worth it, though, reliving the pain of their deaths, that bit of grief, if it means that it might help someone else have a conversation with loved ones. My parents, you see, didn’t want to talk about their ill health or imminent deaths. They avoided them. They shifted them off to me as the eldest daughter, the one who never said no, who always tried to please everyone, even if it ended up damaging her. (If I’d known then what I know now, eight and four and a half years later, respectively, I might have fought more for myself. It’s tiring, being strong for everyone else. You learn to be so strong that you can’t let other people in. I still struggle with that. Sometimes, the things you do out of duty, which is a twisted form of some kind of love I guess, are so damaging. I’m still working on healing that part of myself, on trying to be more open and vulnerable and trusting. I’ve had to prop myself up for a long time and the idea of letting others let me lean on them, even occasionally, feels like cheating to me somehow. I know. It’s f’d up.)
Anyway, all this is just to say, a la William Carlos William and his lovely little plum poem (!), that I hope those of you who read this blog entry have a conversation with your own parents as they age. Do they have living wills? Do they have a health care clause in their will, something which tells of their wishes if they are incapacitated or unable to make their own decisions? Do they want a do not resuscitate (DNR) order on their chart? Do they want to be on a ventilator? There are other questions, of course, which come when elderly parents go into a decline, but those are myriad and too long to list here. (You would need a quick whiskey, and I don’t want to share mine as I hoard it for when I have my bouts of bronchitis!)
If you’re interested in learning more about “Death Cafés,” you can check out this brilliant video by an organizer of the Portland, Oregon event. Her name is Kate Brassington, and the little video really does do a good job of making it all seem less daunting. She also talks about how losing someone to death can make us more aware of how important it is to connect with people. We need to find like minded souls, to recognize them when we see them, and to let them know, as friends, as kindred spirits, that we see their light and we can honour them in friendship and connection. What else is this life for, if not to connect with others????
As I close, I leave with my favourite poet’s words. Seamus Heaney, just before he went into surgery and died unexpectedly, texted his wife the following message: “Noli timere,” he wrote, in Latin. The translation is “Do not be afraid” or “Fear not.” So, I hope, somehow, that we can begin to be less fearful of death. If we treat it as a natural part of this life, and not as something we can avoid or just ignore and pretend doesn’t exist, it might just be a little bit less ominous. And we might find more of that connection we’re all so desperately looking for…
Thinking of you all…and sending out light and love tonight as I miss my parents.