Even before breast cancer, death and I had already been well acquainted. My mother was a nurse. My father was an ambulance driver. My husband used to be a tombstone maker. Death was at the dinner table my entire life.
I grew up with the traditions and rituals my family practiced, and heard stories — stories of people dying, of terrible loss, of remembrance, of love. And through all of this, I never actually witnessed a death or dead body. In fact, growing up I remained quite fearful of the prospect of my own death or a death in my family.
My longtime occupation as a professional organizer was about as far removed from the “family business” as you could get. Over the years, however, I helped several widows part with their late husbands’ belongings. Tidying the physical items was easy; the emotional side of the matter less so. I found myself drawn to helping my clients through the grieving process and coming to terms with their loss.
Now, as a death doula, death and dying is my business, too.
I was diagnosed with Stage 2B triple-negative breast cancer in January 2013. Six years later, I am healthy, but the illness woke me up to the impermanence of life. It caused me to take a long, hard look at where my life was headed. Any romantic notions of death and dying I had growing up had vanished and, in a way, it was my first lesson that death could hold the answers of how to live.
I felt I could understand people on a level I hadn’t known before. I could hear their fears, which echoed my own fears when I faced down my mortality. I could help them ask the difficult questions, the kinds I didn’t necessarily want to know the answers to. Moreover, I learned that if I could help them understand themselves better, then maybe I could help them feel better.
In Caring for our Dying, Henry Fersko-Weiss explains that the approach we death doulas can take for caring for the dying is quite the same as the work done by birth doulas. A death doula helps prepare for the end of life; they work alongside a person in their last days and support their families in grief. This work can involve sitting vigil, working on legacy projects to bring meaning to a life well-lived, or helping to make final decisions easier. A death doula can even help prepare the body and hold a home funeral.
“There’s comfort in knowing you have a little control in an uncontrollable situation.”
We were once used to handling death and dying as families, until society handed that job over to caretakers, hospitals and funeral homes. But with a little knowledge, practice, some training and experience, it gets easier. Death feels less scary.
Dying is most anxiety-inducing if you don’t know what to expect. I have sat with an individual who was dying but had never had a chance to talk about it — in fact, it was never properly communicated to them that their end was near. I remember seeing that they felt so afraid. I have also sat with a family that talked about everything freely, and even the air felt better in that room. There was love and laughter and sharing — children sat right in bed with their mother as she died. Anything is possible when the right environment is created. I think educating people and having open conversations goes a long way.
And that’s the job of a death doula. Death is a process. If one does the hard work before their death — the planning, the good-byes, finding meaning in their life — then the end of a life can be a beautiful moment. There’s comfort in knowing you have a little control in an uncontrollable situation.
Creating a legacy
I sat with one man who had no family in his area, but a niece out East. Our visits were spent talking about his life — the good, the bad and the ugly. He told me of so many regrets. I commented on how great his stories were and decided to write them down for him. After a few visits, he told me that talking had helped him not only to accept his death, but to see that he had lived a life, too. When he died — now without regrets, he told me — his book of life stories was sent to his niece, who was pleased to be able to share her uncle with her children.
When dying people are asked what they are most afraid of, the main response is the fear of being forgotten. We affect each and every person we come in contact with, good and bad. And when we are about to die, isn’t that what we want to know — that we had an effect?
Legacy work removes that fear and gives a dying person more purpose. It begins with finding the meaning of one’s life, and taking that meaning and recording it somehow. It leaves behind their emotional, spiritual and intellectual voice for generations to engage with. It can include writing a book, writing letters to loved ones, or writing on the backs of photographs, like I did with my own grandmother.
Helping a loved one with a legacy project becomes a positive way to spend time together. The dying suffer less anxiety, experience less pain, and find satisfaction in life before they die. For a family member who helps with the project, it can bring closeness and closure.
It is a wonderful reminder of a life lived. After death, for those who remain, this resource is important to help cope with grieving. This type of project can also be done after death has already taken place. There is no expiry date.
It has been just over a year since I completed death doula training. I am more open about discussing death and the dead. This ease seems to allow others to talk about their own experiences, pain and fears — and their grief. I feel very lucky to be able to hold space for such discussions of death to be held. Death can bring so many emotions out at first, but once expressed, people are unburdened somehow.
There is important work for me ahead. Honouring, spiritual and significant work. Work I was meant to do. I want people to see death and dying as an event that is not as scary or lonely as we might imagine, but instead an important life moment full of meaning, ritual and uniqueness. When you can face death from a place of knowledge, it can create another way to live.
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