Tuesday, 2 March 2021

THE COSTS OF CARING AND THE ERASURE OF ITS EXISTENCE

Last week I happened to read a fascinating article by Jordan Kisner in the New York Times Magazine about 78 year old feminist and scholar, Silvia Federici


I kept thinking about what Federici said about domestic work and caregiving being a form of gendered economic oppression - "an exploitation upon which all of capitalism rests." Federici calls domestic work "reproductive labour" and she describes it as the work that underpins all other work, keeping us all alive and well. But she goes on to say (and this is the kicker): "It’s weeding your garden or making breakfast or helping your elderly grandmother bathe — work that you have to do over and over again, work that seems to erase itself."


Federici proposes "The Commons" as an alternative to our current system of invisible, unpaid labour at home. It's an idea of community in which there is a free sharing of goods and resources based on human need. When Federici's mother experienced a crisis of age and frailty, Silvia and her sister dressed and cleaned their mother's bedsores themselves, helped their mother back and forth from the couch so she wasn’t bedridden, fed her, clothed her, bathed her. Throughout, Federici’s mind turned often to reimagining a different system of health care. “Imagine if we had some sort of structure in the community that could help us! This is one of the things I always had in mind: I’m here in this moment in this town in this country — there must be another thousands of women like me who are going through the same type of agony.” - Read the article in the NYT Magazine

So just as I was mulling over Silvia Federici's ideas about caregiving and community, I met Cheryl Sutherland by chance on social media. Cheryl cared for two beloved partners until they died - she has been in the trenches of caregiving and I asked whether she might be interested in reading the article about Federici and writing a personal reflection on it. She would! Thank you, Cheryl, for your deeply moving and thoughtful reflection. 


The Arbor on Cheryl's Farm - A Place of Memories

Early on in my relationship with Daniela, she shared with me one of her thoughts on love. “True love”, she said, “is being willing to die for the one you love. It is being willing to put their needs ahead of your own.” At the time, I had not yet come to understand that it could also mean sacrificing your hopes, and dreams, your physical and emotional health, or putting certain aspects of your life on hold. Or, worse yet, setting certain things aside forever. I did not realize that it meant sleepless nights and exhaustion so extreme that days or weeks melded into one long strand of time. Or that the valleys of loneliness, pain, and despair would be so deep that there would be no light discernible. I did not know there could be moments of darkness that would alter you forever. I did not fully understand the costs of caring. Until now. 


Daniela died in 2011 after a recurrence of cancer. She was 51 years old. We had been together for 10 years and had shared two cancer journeys together. Two years after Daniela died, just after completing the book I would write to memorialize our relationship journey and the aftermath of her death, I met Heather. Much to both of our surprise, we tentatively began a romantic relationship. I say tentatively, but that relates more to our fear of letting our hearts be open than to the speed at which our relationship progressed. We were both wounded warriors when it came to love, but that did not stop us from falling in love with each other. Despite our fears, Heather and I just knew we were right for each other. The first two years of our relationship were incredible. We camped, we hiked, we kayaked, we travelled. From British Columbia to New Brunswick to California and all over Ontario. In 2014 Heather had to take a leave from her job due to chronic stress and the one thing her physician told her was to get outside and do the things she loved. So we did. We savoured all that life had to offer.


I withdrew from my PhD in 2014-2015 and looking back now, this was the point my caregiving began. Heather needed a clinic manager for her veterinary practice, so she hired me. Heather needed support with her children, who lived with us half-time, so I happily took on this role. In late 2014, Heather’s downhill health journey slowly began. Although it is only now, in retrospect, that I am able to pinpoint this moment in time. As Heather’s health gradually declined, my caregiving duties increased. I willingly took on more tasks, more duties and responsibilities. I was happy to help the woman I loved and I saw it as the sacrifice one makes to take care of their family.


I began to notice subtle health related changes in Heather in 2016 and 2017. She tired more easily. She forgot things. She experienced mind numbing headaches. We both chalked it up to chronic stress. Then in 2018, the issues with her balance and vision emerged.


Heather and I had been planning the details of our wedding over the winter of 2017-2018, but when her medical issues worsened we realized that our original plans of being married on Georgian Bay would need to be modified. I remember the day very clearly. It was the day of Heather’s 50th birthday in late May. It was on this day that Heather finally shared just how unwell she had been feeling over the past few months. In conjunction with seeking immediate medical help, we began changing all of our wedding plans to enable us to be married at an earlier date at home on our farm. We had been engaged since 2014 and our wedding was an experience we did not want to miss. 


I did all of the work to prepare the farm for a September wedding, with some assistance from friends and family. When September 1st arrived, the day unfolded perfectly.




Heather’s health managed to remain stable for that summer and it was in the fall that she had her first appointment with a neurologist. It would not be until the following September, in 2019, that Heather would be diagnosed with early onset dementia. We were crushed. In an instant, our whole world changed forever. In less than two weeks, Heather had to stop working and could no longer drive. She went from being a fiercely independent woman to being cared for by me on a much more palpable level. It was a difficult adjustment for us both. It happened slowly, and then all of a sudden, is how our story unfolded. One day Heather was working and driving, the next day she was adjusting to a life limiting illness. It was unfathomable.


It has been said that grief is the price we pay for love, but what are the costs of caring for our loved ones on a day in, day out basis? In a society that does not recognize, let alone support someone who is caring for a loved one with a chronic illness or palliative condition, how is it that that we actually survive the experience intact? There are intermittent support groups available for carers whose loved one’s illness fits into a tidy category, but that still puts the onus on the carer to physically be able to attend the group. If the group is online, one has to be able to carve out a specific chunk of time to fully participate. I was not able to achieve either goal during the time I was caring for Heather while she was dying. It was mostly just Heather, her youngest daughter, and myself.

In March 2020, Heather developed a respiratory illness that turned into pneumonia. Her illness came just as the pandemic was beginning and in Canada, the only people being tested were those who had travelled outside of the country. We had long discussions with our healthcare provider and it was Heather’s wish that she be cared for at home. She did not want to die alone in the hospital. She did not want to be put on a ventilator. She wanted to die at home if that is what the Universe had in store for her. And I willingly took on the role of being her primary caregiver. There were of course healthcare measures taken to try and treat the pneumonia, but none of them helped. Eventually, Heather was treated as palliative, and that meant injections every two hours and many days of very little rest, let alone sleep. 


Miraculously, Heather survived her battle with presumed Covid, but found herself declining even more quickly than she had been before. We were on a crash course and we knew it, so we opted to make the most of the time she had left. We focused on doing the things she loved.




The truth of the matter is, even in retrospect I would do it all again. I would take care of the woman I loved, making the sacrifices that I did, even knowing the costs. But what I have an issue with is how unsupported my role in Heather’s caregiving was by any kind of official government support. There was nothing. Caring for a dying loved one does not just cost one emotionally and physically, it costs one professionally and financially as well. We do it out of love and we do it because it is the right thing to do, but we also do a tremendous amount of unpaid labour in the process.


Like Silvia Federici’s mother “nobody saw my work.” There would be no official recognition of my sacrifices over the years, nor would there be any during the time that Heather was so desperately ill. There would be no financial support, no Purple Heart of Caring. It was as though my sacrifices were just expected. Not just that as Heather’s wife I was expected to care for her, but that I was expected to do it for free. Without this type of work being officially recognized, in essence, it becomes erased. It becomes an event that never happened.  

What did you do last year?  How do I even begin to respond to that question…


I would encourage us as a society to do what Federici poses: “to dare to imagine another way.” At the heart of caring is the question of what is the value of life. Where is it that one’s priorities should lay? As we have learned during the first year of the Covid-19 Pandemic, essential workers are not the professionals who create wild and fabulous ways of making money. Aside from health care professionals and all of those who support them, essential workers are those who feed our communities, those who care for children and the elderly, those who tend to the sick and dying. Essential workers are those who put their life on the line, every single day, to protect and care for others. And rather than their work being erased, the time has come for this work to be recognized and supported.  


Cheryl Sutherland MA, PhD (abd): My path in life has led me to caregiving, but I am also an author, a photographer, a mother, a social justice activist, a farmer, and an avid lover of animals and the natural world. I believe that love can change the world.


 


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