Nova Scotians urged to participate in national survey to help better understand grief

An old soul with big blue eyes and an even bigger heart.

That’s how Carla Garrett remembers her son Xavier. Diagnosed with brain cancer at just eight months old, Xavier died in May of 2017 at the age of seven.

“He was just really easygoing. He had a great laugh. If you heard him laugh, you couldn’t not smile and laugh with him,” Garrett said in an interview, a smile creeping into her voice. 

“He loved Power Rangers and he loved to dress up in costumes. Star Wars was one of his big things. Darth Vader or Darth Maul. He loved to play those characters.”

In fact, the young boy was cremated in his Darth Vader costume, and his obituary ends with a Darth Vader quote: “The Force is strong with this one.”

‘Grief is like a dirty little secret’

“I could say right now, almost seven years later, that my grief is like a dirty little secret. I’m embarrassed to admit when it knocks me down because it’s been seven years,” Garrett said. 

“But that’s how we kind of expect it. That it’s okay to be sad for awhile after the death… But grief doesn’t end. And here we are seven years later and it’s still very much part of our lives.”

In addition to her involvement with Canadian Virtual Hospice and passion for helping other families navigate pediatric palliative care, the Middleton, N.S. resident also wrote a book. Illustrated by her husband Mark, it’s intended to guide and help children facing death as well as their families.

“He (Xavier) had lived pretty much his entire life with cancer, and us with everything that goes along with that,” Garrett said. “So, as you can imagine, grief has been a major part of our lives since he was diagnosed and then obviously continuing since we lost him.”

Garrett said she was overjoyed with the recent news that $1 million in federal funding had been given to the Canadian Grief Alliance (CGA) to better support Canadians living with grief. 

The CGA has partnered with the Canadian Alliance for Children’s Grief and the Canadian Virtual Hospice. The three groups will use the recently acquired federal funding for their Advancing Grief Literacy in Canada project. The organizations will develop resources and create learning opportunities to help Canadians better understand and respond to grief.

Grief literacy

“We do look at grief as being death-related. And in our experience, there were so many times we were grieving before we lost our son. So I left my career to care for my son, and that I grieved. My career was really important to me,” Garrett said. 

“Another thing was even after we lost him, I did not expect the grief around leaving the hospital. They, our care team, had become our second home. And then when he died, that was cut off, and oh, I missed them. So it wasn’t only grieving him, but it was grieving everything in that circle that we had.”

Grief literacy, Garrett said, is in part about ensuring people understand that grief is normal, and that it’s a journey. For those supporting grievers, she said it’s about ensuring they understand it can’t be fixed.

“There are no words that are going to fix their grief. If we can have people understand that, as hard as it is,” Garrett said. “Because even though I’ve experienced grief, I still struggle with how to respond to people who are grieving.”

It’s also important, Garrett said, to recognize that grief can also look different in children. Xavier’s twin sister continues to grieve the loss of her brother. 

“She was, obviously, seven when her brother died. Grief back then looked different than her grief now as a 14-year-old girl,” Garrett explained. 

“Someone would look at her when she was seven years old and be like, ‘Oh, she’s fine. She’s not grieving.’ But children’s grief is different. In grief literacy, that also needs to be communicated, what to look for in children.”

‘Where are the gaps in service’

As part of the Advancing Grief Literacy in Canada project, the CGA has launched an online public consultation survey. Open to Canadians who have experienced any kind of loss, that survey closes on Dec. 7. The CGA will use that information to help inform a set of national recommendations it will present to the federal government in 2025. 

Mary Ellen Macdonald holds the J&W Murphy Foundation Endowed Chair in Palliative Care Research at Dalhousie University. She’s also on the Canadian Grief Alliance’s national consultation committee. She said the quick, five-minute survey is about getting a broad baseline of Canadians and their grief experiences. 

“Grief is not just about death. It could be loss in so many different ways. It’s trying to capture what has worked for you in the past. Maybe it was social media, or maybe someone in your faith-based organization was really helpful for you,” Macdonald said. 

“So it’s trying to get a sense of what is working for Canadians, what isn’t working, or where are the gaps in services.”

This is one reason the survey requests postal codes. Macdonald said someone from a rural postal code will likely have different responses and experiences than someone living in a postal code located in downtown Toronto, for example. 

It’s also about getting a range of demographic variables. Macdonald said advancing a truly national strategy means being as inclusive as possible. 

“Grief pops up in different communities in different ways, and it’s really important to try to capture a little bit of that,” Macdonald said.

‘Grief isn’t something you can diagnose and treat’

The survey is also expected to help promote the CGA and encourage conversations around grief literacy. 

“So the survey in and of itself is a little moment of grief literacy,” Macdonald said. “It’s really just signalling that this is important.”

Despite the fact most people will experience grief and loss in its many forms in their lifetime, Macdonald believes it has remained in the shadows because it doesn’t align with a neoliberal economy. 

There’s so much about grief that gets in the way of productivity, of getting back to work, of getting your child to school, of being an upstanding citizen. Grief really sidetracks you in so many ways. From just simple things like ‘Oh, you’re not supposed to cry in public,’ to ‘I feel heavy today. I want to hit snooze. I just want to go under the covers.’ Similar to depression and other mental health challenges. But grief is not something that you can then diagnose and treat in the same way that you could maybe give a pill for depression or something like that.

Why? Because grief is lifelong and it’ll come and it’ll go. And that’s the other thing. You can’t regulate it. You can’t put a timeline on it. You can’t say, ‘OK. In six months this person will be fine.’ Because you don’t know. You don’t know what they really will feel like in six months. It’s just so unruly. I think that’s why we are like ‘Let’s just shove it under the carpet and really, really, really hope it goes away.’ And it just doesn’t. That’s not the nature of grief.

‘Raising all the boats in the harbour’

Macdonald said every death produces about nine grievers, and grief literacy is critical in helping us anticipate our own losses. But it’s also important that we’re all better prepared to help others, including our family members, neighbors, friends, or colleagues.  

“That’s what grief literacy is. It’s about raising all the boats in the harbour,” Macdonald said. “We all need to understand grief better if we’re grieving, or if we want to be supportive of other people who are grieving.”

Statistics indicate that about 10% of grievers will need help from a mental health care professional. But Macdonald said the overwhelming 90% “are going to be OK” in communities that support them.  

“It’s very much about public health, public awareness, and community mobilization around understanding what this thing is and then understanding how people will feel better supported when they’re grieving,” she said. 

“Because grief really is very lonely. It can be very isolating just in what it is… Grief doesn’t go away. Grief is something that you grow around, you carry forward with you in really beautiful ways.”

Creating connection, decreasing isolation

Macdonald said many of us carry our grief in “beautiful, joyful ways.” From putting a photo of a beloved deceased loved one in your work cubicle to wearing a necklace or getting a tattoo to memorialize them. 

“Partly it’s about not saying grief is just sadness and despair, but that it’s incredibly normal. People are doing this whether you like it or not, or if you ask about it or not,” Macdonald said. 

“But when you do ask, ‘Oh, I see you have a new tattoo’ and let the person tell the story, and we’re hearing what happened and what the loved one’s name was and what they meant to them, it creates community. It creates connection, and it decreases isolation.”

Describing grief literacy as a community-based, grassroots, public health movement, Macdonald said it’s not necessarily about professionals like psychiatrists and psychologists. While they are critical for those 10% of grievers who require their help, she said that piece is already in place. 

“Yes, it’s not always easy to access. And in the pandemic especially because there were waiting lists and whatnot,” Macdonald said. “But it’s (about) helping the 90% be more comfortable, being supported by their neighbours or their loved ones.”

Grief and the holidays

As part of its national grief literacy project, in January the CGA is hosting a free monthly webinar series called grief chats. In addition, with the holidays on the horizon, a free ‘grief and the holidays’ webinar is happening on Dec. 6.  

The holidays are particularly hard the first time because you’ve got to recreate rituals. The empty seat at the table Do we acknowledge the empty seat and leave it empty? Or do we cover it up so that we’re not all sad? It’s that whole ‘Oh, we don’t want people to be sad, but they are sad.’ And that’s okay. 

You can carry the sadness and the joy at the same time. We do. All the time. You can laugh and cry in the same heartbeat, and grievers do that all the time. Part of it is just this horrible emptiness, right? That’s what the webinar is about. It’s about anticipating… Let’s think about it in advance and be a little bit gentle with ourselves.