a good death

A Good Death

Amid the constant barrage of COVID-19 news, three words keep running through my mind. A Good Death.

I hadn’t heard this statement until about a year ago. I hadn’t made compromises and decisions with it in mind until six months ago; when I lost my mom to metastatic breast cancer. My family was in a situation where we knew my mom’s death was coming, someday. She was taken from us very suddenly yet not suddenly at all. We didn’t get much notice, just a number of days after a long period of her living well with MBC. But we had those days.

A Good Death. It keeps swirling around in my brain every time I read the COVID-19 updates, the constant changes.  I think of the days and hours spent with my mom that were both incomprehensibly heartbreaking and an invaluable gift. I feel a great amount of sadness for those who may not be able to give their loved one A Good Death in the time of COVID-19.

I worry too about those who aren’t there yet. Those trying to keep their loved one alive while getting treatment for stage 4 cancer. If my mom was here now I would be even more worried than usual because it feels so much harder to keep them safe. Your every move, their every move would have to be thought out, weighed out and carefully carried out, more so than ever.  That’s a big statement because those living with cancer are pros at social distancing, isolation and preventative measures as it is. I worry for those patients who could find themselves facing death sooner due to COVID-19 and all those who will die during this time, cancer-related or not with circumstances dictated to them and their families. Necessarily so, but dictated nonetheless.

My mom had A Good Death. We got to take her home, where she wanted to be. In the early days, her friends and extended family came. They hugged her and they talked and they cried. They hugged us and my dad. She sat out on her deck. Sometimes inside with her window open to listen to her grandkids play in the backyard. When the time drew near we closed ranks around her. It was what she would have wanted and what we needed. Just the five of us with visits from her six grandkids and her son-in-laws. But the people still came and went: the palliative care nurses and aids, my mom’s physician, her friends still came to sit with us, more came and went with food and coffee, my best friend steadily there at all hours of the day and night. The support we needed to get us through it. Sometimes we had precious time alone with her. Other times it was the five of us all together. Precious moments. Gifts. We said all the things. Heartbreaking sights, sounds and final acts of love that are burned into my memory. It’s never, never, never enough time but I am thankful for every single second I had. I feel sick at the thought that just a few more months and it couldn’t have been done that way. All of that would have been taken from us. Sick at the thought of others having that taken away from them. So many people all over the world will lose someone during this unprecedented time and they will do it alone. Then there is the after. What comes after the loss? We don’t have the time here to deep dive into the additional void in people’s lives where the support of so many should be.

I see the updates, every day. More and more restrictions. They are necessary, but some of the same people we are trying to protect will be lost during this time. Will it be possible to provide A Good Death in the time of COVID-19? Will it be much too far from what they wanted, planned and deserved to be called good? I see grief on top of grief coming for those that will lose someone during this. A mountain of grief.

I am so sorry for all that they will lose. Moments and memories and support that will be taken from them on top of what they are already losing. Not just the cancer community. It’s my frame of reference but I mean all the vulnerable. All those in the end of life stage; be it from disease or age or from COVID-19 itself. I see the pain of the dying, the families, the oncologists and other specialties. The palliative and hospice teams who have dedicated their lives to giving people A Good Death. They have rarely, if ever had to do it this way. I am sorry for their pain too. It’s grief on top of grief.

Just when this mountain of grief is coming we might not have what will be necessary to overcome it. Never before have we needed our cancer and mental health charities more. Those who provide support, resources, community and front line services. They are in great jeopardy.  Where will people turn to deal with loss on top of loss?

I know there are so many sectors who need help right now, that there’s more than one frontline. Yes, I see this all through my lens but I’m aware of the complications. My two little boys are home, school is closed. My business, one of the first to be mandated to close; my job in jeopardy. My husband works in oil and gas so there’s far too much to unpack there. My sister is a front-line registered nurse. So I know, it’s very complicated. Many sectors, if not all are in some level of danger. Some need immediate help, others can wait until later.

But it needs to be said that a mountain of grief is complicated too. Death, grief and loss under unprecedented conditions and restrictions will have far-reaching implications. Help is needed. Help can be given by our cancer and mental health organizations, if they can survive to give it. They can’t be forgotten. If we can not provide A Good Death during this time then the extra layer of grief of those left behind will add to the issues that need to be addressed post-pandemic. Those issues are on top of the ones we had before COVID-19. Many of our charities were already stretched thin trying to provide help and support for all who need it. A mountain of grief and a system ill-prepared to handle it.

I am grateful for the ways in which we were able to give my mom A Good Death. It doesn’t help with the void in our lives or ease the pain and grief we feel every day, but it is something. It was one thing we could control, one thing we could give her when we could do nothing else. It helped her and that helped me get through those days. It may help me later. I don’t know that yet. I do know I am grateful for the gifts I gave and the many I received at that time.

To those who will be impacted by the COVID-19 restrictions affecting death, grief and loss, I see you.  Patients, caregivers, families, healthcare workers. I’m sorry. I hope you can do it in the best way possible under these circumstances.  I wish it could be different. I sincerely hope whatever supports you need will be there during and after your loss. Know that there are many people like me holding you up in our thoughts and sending you the strength to do what feels impossible.

Read more about dealing with grief here.

Carmen Powell

Carmen Powell is a Non Profit Manager currently living in Brooks, Alberta. She is a wife and mom to little boys, living a full and busy life engaged in many community activities and organizations. Carmen is on Rethink’s MBC Advisory Board and is passionate about lending her skills and experience to change the landscape of MBC in Canada, as her mom is currently living with the disease since its recurrence in 2013.

Over the past five years, Carmen has been actively involved in advocacy and fundraising for MBC as project manager for the Pink Ribbon Project, an annual event dedicated to raising awareness and funds for MBC, as well as participating in advocacy efforts around drug access in Alberta and an advisory role on the Priority Setting Partnership for MBC headed up by Dr. Nancy Nixon at the Tom Baker Cancer Centre in Calgary.

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