a white woman with long, blonde hair wearing a black hoodie smiles gently into the camera.

Nicole – Pandemic’s Effect on Grieving as a Community

Nicole – Pandemic’s Effect on Grieving as a Community

Nicole discusses the ways the pandemic has affected the way people grieve as a community.

Nicole – Pandemic Leads to Increase in Drug Poisoning

Nicole – Pandemic Leads to Increase in Drug Poisoning

Nicole discusses the increase in drug poisonings during the pandemic due to a number of factors.

a white woman with long, blonde hair in black hoodie smiles gently into the camera.

Nicole – Advice for Other Professionals Managing Grief

Nicole – Advice for Other Professionals Managing Grief

Nicole discusses dealing with repeated loss while working in community outreach, not being afraid to be human.

a white woman with blonde hair and a black hoodie smiles gently into the camera.

Nicole – Grieving as a community

Nicole – Grieving as a community

Nicole discusses the power of grieving together as a community. Finding connection and trust.

a photo of the reflection room, a table with writing supplies and a red cloth hanging on the wall with a tree and peoples' written memories and reflections on grief posted on the sheet around the tree.

The Reflection Room® project: How storytelling supports processing grief

The Saint Elizabeth Foundation offers a project called the Reflection Room – a space for thinking and talking about dying, death, and grief.

The Reflection Room project is an evidence-based participatory art installation that was developed by researchers at the SE Research Centre and Memorial University in 2016. The project included a research component that evaluated the impact of Reflection Rooms as the project adapted over time to address changing needs.

The Reflection Room project was first developed to support people in community and healthcare settings to move from death-denying to death-discussing. From the first installation, the Reflection Room project has gone through three Phases of adaptation and continues to evolve.

Common elements across Reflection Rooms, whether they are set up to include an entire room, hallway, or corner of a room, include a quiet, calming space that invites visitors to read other people’s stories and post their own. The rooms are unstructured and unfacilitated, allowing visitors to engage with the space however they wish.

Over a five-year period from 2016-2020, the Reflection Room project was installed in 62 places across Canada, including in conferences, art galleries, hospices, and hospitals (Phases 1 and 2). Over a thousand stories were shared by individuals during their visits to these various Reflection Rooms. Results from the study from this period showed that storytelling can be an important part of grieving.

In 2020, Phase 3 of its adaptation and evaluation began with the SE Research Centre being asked to expand the reach of the Reflection Room to long-term care home communities in Ontario to respond to some of the accumulated pandemic-related grief in those communities. With the support of the Saint Elizabeth Foundation, Ontario Health Central, Family Councils Ontario, Ontario Centres for Learning, Research and Innovation in Long-Term Care, and Ontario Association of Residents’ Councils, over 50 homes signed up to host a Reflection Room®. In order to adapt to the environment of long-term care homes, an easy-to-set-up ‘kit’ incorporating instructions and materials (e.g., Reflection Cards, a red curtain to display Reflection Cards, candles, etc.) was developed and sent to homes free of cost. Overwhelmingly positive feedback has demonstrated that the Rooms support communities to work through grief by having a quiet space to rest and reflect, disclose emotions, process thoughts, and feel connected to others through sharing stories. The project often is complementary to other existing initiatives in long-term care homes such as palliative care committees and spiritual programs.
A collection of the stories shared over the course of the project is available to view on the Reflection Room website.

If you want to learn more about the project, contact foundation@sehc.com and listen to the Grief Stories podcast episode 64.

Neeliya Paripooranam, MSc, is a Project and Communications Manager at the SE Research Centre, overseeing the Reflection Room® project. Celina Carter, RN PhD, is a Senior Research Associate at the SE Research Centre. Paul Holyoke, PhD, is the Vice President, Research and Innovation at SE Health. Justine Giosa, PhD, is the Scientific Director, SE Research Centre and Adjunct Assistant Professor in the School of Public Health Sciences at the University of Waterloo. Hana Irving, MA, is the Director, Philanthropic Programs for the Saint Elizabeth Foundation.

a field of daisies

Beauty found at the edges: a portrait of community support

By Meghan Sheffield

In the first days of July, there aren’t many flowers blooming, I learned.

I’d sent a text saying “Hello friends, I’m putting out a call for flowers. I went to public school with Kory, the young man who died in downtown Cobourg this week, and though I hadn’t seen him in recent years, I feel the loss of him on a community level, as I imagine you do, too. Some of Kory’s people are gathering tonight in vigil at the bank where he died, and I’m gathering flowers from those of us who have gardens to share with this grieving community. Do you have some blooms in your garden that you’d be willing to share?”

Kory died as a result of a toxic drug poisoning that took his life in the bank vestibule where he was sheltering. His friends were grieving, angry, disbelieving. The wider community was in shock that this could happen here, in such an ordinary place, to a local boy, born and raised.

Those who knew him best, who had been with him in what became his last days and months, began to talk about holding a vigil, a time and place to be together in their grief.

As it turned out, the tulips and peonies had faded and finished, and the dahlias and zinnias hadn’t begun to flourish yet. I got some nervous replies about the current state of the garden. A mom from my daughter’s class texted to say that they were sorry, but just didn’t really have much to offer right now.

Then the first yes rolled in. “Yes, I will pull something together. We have one million daisies.”

A man’s whole life. One million daisies.

As it turned out, there was an abundance to be had, if you knew where to look, if we just widened the margins of “the garden” and looked to the edges of the wild places.

We know that trauma of all kinds is inequitably distributed in our society, and that access to healing resources is even more inequitable. For community members who rely on a prohibited, criminalized supply of certain substances, the experience is not just a risk of personal harm, but of compounding losses and grief. It means mourning in isolation because the cause of death is so stigmatized. It means administering life-saving medicine and performing chest compressions in the glow of flashing lights, while still in mourning for the most recent loss.

I spent an hour driving around, picking up mason jars filled with blooms from doorsteps all over town. There were daylilies and hydrangea, wild vetch and bladderwort, fragrant bee balm and holy basil, and yes, one million daisies.

At the vigil, the jars of flowers were joined by an eagle feather and abalone shell, offerings of cigarettes, and a can of Molson resting on the window sill outside the bank. Candles were lit, stories were told, tears were shed.

Those of us who didn’t know Kory well, who were present to show our support, to acknowledge the community and systemic level failures that had led us to this place, were invited to hold a perimeter of care for those in the centre, who were grieving, by standing at the edges of the gathering.

For days after the sunset vigil, at the doorstep of an ordinary bank, flowers bloomed on the grey cement sidewalk on main street. Wild, fleeting, beauty.

a dirt path appears between greenery and under trees

Alongside

By Mike Bonikowsky

Grief is the great leveller, and the great divider. Everyone grieves, sooner or later, but no two people will experience it in the same way. No two bereavements are the same, and neither are any two consolations.

This is only more poignantly the case for people with developmental disabilities. Not only is their grief completely unique, but they are often unable to express it in traditional ways. How are we to support someone through the grieving process when they cannot, or will not, tell us what they are thinking and feeling about their loss? The answer is simple, and difficult.

In Christian theology, there is a concept called “the Holy Spirit”. This is the invisible piece of God that is everywhere all the time, with and within all people. The name given to this in the original ancient Greek is the “Paraclete”, literally, “The one who comes alongside.”

That is also our best, and only role, when supporting a person with a developmental disability to grieve. We must be the one that comes alongside. There is no closer place we can get to. We must be present, be with, perhaps not understanding or comprehending what the person we support is experiencing, but alongside them nonetheless. We must be there, ready to provide whatever we can discover of their unique need in grief.

But that coming alongside must begin before the bereavement. We must already have been there through the happier seasons of the person’s life, if we are to know them well enough to read the language of their grieving, and hope to know in what little ways we may support them. Supporting a person with a developmental disability to grieve is not a matter of coming alongside, but of remaining where we already were. It is a matter of knowing and being known by them, of being trusted. It is not so much a matter of doing anything for the person, but of being something for them: A safe place, a consistent and reliable presence. It is to be a fixed point in a confusing, chaotic world, someone of whom they can say: “When that person is here, I can expect things to be like this.” Only when this relationship is present and well-established in the ordinary times can we come alongside in the darkest, loneliest season on the person’s life, and hope to meet their unspoken needs.

And usually the answer to those needs is what it has always been: To simply be there with them, to prepare a meal for them and do the dishes afterward, to help them wash body and find clean clothes to wear. To open the curtains in the morning, so that when they emerge from the dark cave of their unique grief, for however short a time, they are greeted by a world that has not ended, and a face that they know, and that knows them.

a white bowl containing a scoop of chocolate ice cream and a scoop of strawberry ice cream.

Grief & Ice Cream

By John (Lewis) Clark, Author of upcoming book (Cook Away Your Grief).

When my wife of 18 years died in 2016, I became a single father missing the love of my life, and also had to learn how to raise two girls (13-17 at the time) on my own. I remember a conversation I had with my mother-in-law and oldest daughter that began as reminiscing over a person who became a lost love to all of us. We all talked about different aspects of my wife but shortly, it transformed into a “who meant more to her” fest.

All our points of view were out of love, but each of us had a different angle for different reasons. My mother-in-law saw my wife’s death as the loss of her baby girl, my daughter, as the loss of her mother and me, as the loss of my love. The conversation became elevated because not only was it a sensitive topic, but it became a comparison.

I dubbed this the “Umbrella Effect” because it felt like an umbrella that fit three but caused each of us to become wet on one side. When my mother-in-law made a comment that got me thinking, I had to back off my somewhat defensive position. She talked about how she felt when my wife was born. It soon made me think about how my wife felt when our babies were born, and I realized that I was solely the contributor in each case. The connections that my mother-in-law and my daughter had trumped my 18 years automatically. These two ladies had true connections with my wife. Love based on biology beats loves based on time and experiences, any day.

We all had a relevant case, but mine was getting weaker with every statement made. I had to understand that biological connections give a different justification for reminiscing. As a husband, I was torn between defending my love for my wife and understanding my mother-in-law and my daughter’s points of view. Although it hurt, I had to realize the source of the pain. I no longer wanted to be an unconscious contributor to their hurt. I had to realize that everybody mourns loss differently, and comparing only brought more hurt to an already sensitive situation.

To alleviate the tension, I grabbed three bowls from my mother-in-law’s cupboard, got the scooper, and three spoons. I pulled out the cookie dough ice cream, which prompted a truce. Peace is always achievable over ice cream. I now know that although people can be subjected to the same grief, they all process and see it differently. What is good is that everybody remembers her for the beauty she brought to our family. Although our conversation got contentious at times, it was clear that although we lost her, no one lost the love we have for her.

an infographic containing text that summarizes this blog post.

Tips for Grieving During the Holidays

By Alyssa Warmland

The holidays can bring up a lot of feelings, especially when you’re grieving the loss of a loved one. Whether it’s the first holiday season without someone, the holidays mark a time where someone you love died, or it’s just hard to be around celebration when you’re not feeling celebratory, December can feel heavy.

These are a few tips for grieving during the holidays:

Remind yourself that it’s okay to feel however you feel.

Feeling sad or mad? Feeling happy- and guilty for not feeling worse? Whatever comes up for you is normal. It’s okay to sit with your feelings, to give them some space when it feels right, and also to compartmentalize them if you feel like that’s best in the moment. You can acknowledge your feelings, put them in your pocket, and hold on to them during the family dinner if you want to. You can take them out of your pocket and spend time with them later. Grief is unique, and can show up in unexpected ways. It’s okay to feel however you feel.

Reach out for connection.

Sometimes we worry that we’ll make someone else upset if we mention our grief, or if we show up in a way that isn’t particularly festive. The truth is, the people who care about us want to hold space for us, even when we’re grieving. Connection can help us feel better.

Find ways to incorporate your loved one(s) into celebrations.

Did your dad have a favourite side dish your family always served at dinner? Did Oma make sugar cookies every year? Did your sister always compliment you when you wore red? Consider serving dad’s dish, or baking Oma’s cookies, or wearing red.

Share stories about your loved ones.

Sometimes it can be tempting to pretend the people we love haven’t died. As if, by not talking about them, we can pretend they’re still around. In fact, sharing stories about them can help honour them and to feel their presence. Remembering our loved ones out loud in connection with other people can feel healing.

Watch/listen/read other peoples’ stories and insights about grief.

At griefstories.org , we host stories and insights from people with lived experience in grief, as well as healthcare professionals’ insights on grief. These videos, podcasts, and blog posts are available for free 24/7, anywhere you can access the internet. Our hope is that this content may help you feel less alone.

Set boundaries.

Listen to how your body feels. You don’t have to do anything you don’t want to do. You are safe and you are worthy of operating with integrity toward yourself. Grief can be hard, and it’s okay to be gentle with yourself as you move in and through it – even during the holidays. Set whatever boundaries feel right for you. There are no rules here. You’ve got this.

Learning from Grief

By Noelle Bailey

Grief is weird. Odd start, I know, but that was the sentence I used a lot whenever someone asked me how I was. It was never a constant feeling; it changed day to day. And still does. It’s the full gambit of emotions from sadness to anger to guilt and, though dark, even humour found its way in.

In December of 2019, I lost my father. His health had been declining for several months, and we had started the process to diagnose and begin treatment for what we knew was probably cancer. At his first appointment with his oncologist, he was immediately admitted to the ER. By the next day he was on a ventilator, and within twelve days they came to tell me that the cancer had spread everywhere. We had lost a fight we hadn’t even really begun. In March of 2022, my mother passed away after a 14 year fight with MS. It was a much different process to lose her by degrees over those 14 years, witnessing her own body turn against her while powerless to do anything to stop it.

Those are my two experiences with the strangeness of grief. They were vastly different experiences, but also similar in that they cut me in two and changed my life.

The two biggest things I’ve taken from my grieving process are these:

1. I will, for the rest of my life, miss the conversations we will never have. There are books I’ve read since they left that I would love to talk to my mom about. My dad never got to hear about my new job, and he would have loved it. Pictures people have brought me that I can never ask them about, stories I missed out on hearing. The moments of my life, big and small, that they won’t be here for is the part that takes me under every time.

2. I can grieve however I need to. It doesn’t need to look a certain way or be anything other than what I need. I struggled a lot after losing my mom with the idea that I wasn’t sad enough or broken enough because after watching her long hard battle there was a certain peace lacing itself through the pain. When we laid my parents to rest in the cemetery next to my grandparents, we played “The Rainbow Connection” sung by Kermit the Frog because that’s what my mom had always said she wanted to play to say goodbye. Then my husband, Cale, and I did a shot of Jack, like my dad and Cale did when they went out for my dad’s 60th.

I’ve never been very good at setting boundaries in my life, but I tried very hard to make sure I set them surrounding my grief. To let myself do whatever I needed to process the loss of my parents and not to let anyone tell me I should be acting or feeling a certain way. I laughed at things they would have laughed at, and when I needed to, I cried. I am slowly learning how to live in a world without my parents, and know that I will be for the rest of my life.

colourful masks lay on a table

There One Day and Gone the Next : Art Therapy and Grief

By Sarah Smith DTATI, BFA

Over the last 12 years or so, I’ve had the opportunity to work with those grieving individually and in group settings, which has provided me with experience and insight into how art therapy (and art as therapy) can be beneficial to those dealing with loss.

What is Art Therapy?
“Art therapy combines the creative process and psychotherapy, facilitating self-exploration and understanding. Using imagery, colour and shape as part of this creative therapeutic process, thoughts and feelings can be expressed that would otherwise be difficult to articulate,”(CATA, 2022).

There’s no right or wrong in art therapy, it’s a matter of using the art as a vessel for wellness along side a trained professional. There are many benefits one can receive from engaging in the art making process such as: healthy coping strategies, insight, emotional stability/balance, stress /anxiety reduction, grounding of emotions, pleasure/joy, creativity, safe space, expression, control, freedom, and connection among many others!

Art Therapy and Grief
Grief is a very layered and challenging thing that is unique for each individual who experiences loss.
Because there is no “proper” way to grieve, art therapy can make for an excellent coping strategy as it allows for each person to express themselves in the way that’s best for them.

Unlike traditional “talk therapy”, art therapy has the art, so this means that one does not need to speak if they don’t want to or if they cant find the way to articulate how they feel into words. Sometimes, while people are grieving they cant even pin point how they feel and at other times the emotions can just be so overwhelming it can affect one physically and to try and talk about the emotions just exacerbates them.

Creating art in itself can be a healing thing. It can be a fun or relaxing thing to do. Engaging in an art therapy session can allow for so many more benefits. The art therapist can provide the participant with specific art therapy directives and art materials that they feel may be beneficial to your needs. Art therapists are trained to read and assess clients’ artwork. This means they may see things you may have missed that you might benefit from if brought to your attention. This insight makes it a great learning tool for self-discovery. We as art therapists believe that the art work holds the subconscious. What’s great about this for those who are grieving is that people can process however they need to. Some people need more time to process, some people need a more gentle approach where they feel in control, some people refuse to acknowledge things, and some people are just going through the motions and engaging in the art making process. The subconscious is purging and the healing is happening whether they realize it or not.

Art Therapy Directives (examples)
I facilitated a workshop at a hospice a couple years ago and offered it to those who had lost a loved one. The workshop began with a few art therapy warm-up exercises with the intention of helping everyone feel a bit more comfortable in the space and with each other.

The first art therapy directive I had them do was make flowers out of coffee filters, markers, and water. I wanted them to make something symbolic for their loved one. They began by writing whatever they wanted onto the coffee filters. Some people wrote the persons name, poems, a memory, or even drew a picture. They then watered down the filters and the colours began to bleed. Some people cried during this part. They could resonate with the symbolism. The water like tears. The bleeding of the colours representing pain, fuzzy memories, and a distant grasp on the person. When the coffee filters had dried we had turned them into flowers. The transformation of taking what we lost and carrying it forward in a new way was very powerful to witness and a very healing thing to say the least.

The second art therapy directive was focused more on the individual rather than the deceased. I gave everyone a mask. I instructed them to paint the front of the mask how they appear to the world and I asked them to create on the inside of the mask to show how they really feel or how they are actually doing (see figure 1).

colourful masks lay on a table

Figure 1.

They shared their art work from the workshop, but it was heavy. They were feeling sensitive and tired among other feelings so I had them sit and talk for a bit and then had them pull a self-care card for a distraction before letting them and drive home, as it may not have otherwise been safe for anyone overwhelmed after such an engaging session. This is typically how I run a grief workshop. Before they left the hospice asked them to fill out a score sheet to see how they felt about participating in the workshop and everyone said they liked it and for reasons, such as that they felt less anxious, they felt less alone, the felt lighter and more hopeful after the workshop.

At another hospice art therapy workshop, I had them create memory boxes. I provided them with a wooden box along with a variety of art materials, the only thing I asked was that they brought in a picture of the person they had lost. The purpose of this was to give them an opportunity to create something that could hold two energies, a place to honour them deceased, but also something tangible for them to have and hold. From my observations, I remember them taking a lot of time on these boxes and they were very quiet while making them. When they shared them, they were emotional, of course, but pride came through, it was like they made them for their people and wanted to make them well, so that their loved one would really like the box. This made them feel good for reasons such as honouring the person still while they are gone. Some people felt that their guilt had been eased a bit because they were physically doing something for that person who was no longer here. To see an example, see figure 2 and 2b.

a wooden box with a brass clasp and a picture of a compass on top.

Figure 2

a photo of a man inside a wooden box.

Figure 2b.

Following the memory boxes, I had them paint a step by step painting for their loved one. This was more of an art as therapy approach. This means they were literally using the art itself for wellness. They followed along with me and painted a whole painting. By following me, they were able to safely let go and get lost in the art making process. The intention was to enjoy the process while also giving them a healthy mental and emotional escape for however long it took us to paint the picture. I selected a picture of trees that had no leaves, purposely to symbolize letting go, loss, and reflection but the painting had an element of hope to it, the tress were pointing up to the sky, facing the light and there was lots of colour (see figure 3).

canvases featuring colourful, abstract art.

Figure 3.

The photos below are some examples of art from some of my sessions with clients around grief. They speak for themselves.

a colourful abstract painting

Figure 4.


a paper plate with a drawing of a poppy and writing that says "remembrance day"

Figure 5.

a bridge in the fog

Grief Literacy and Developmental Disability

By Carrie Batt, Grief Educator

Grief literacy has become a popular topic, yet it is a topic that is untapped within the disability community, specifically within the developmental sector. The sector supports and empowers people with a developmental disability and consists of families, their loved ones and service providers.

Within the sector there are very few conversations, education, or shared expertise about grief, loss, and disability. The pandemic brought to light the sheer lack of education and support that exists about grief, loss, and disability. My way of dealing with such a realization was to try to make a small change, which began by forwarding a proposal to my employer, requesting that we offer grief literacy sessions. The proposal was accepted, and we successfully offered four 1-hour grief literacy sessions, which reached a total of 20 participants. What we learned in offering these sessions was the value of learning new language to help in expressing and describing their grief experiences as, often, people with a developmental disability have grief stories that so often are unacknowledged and go unnoticed. Their grief histories are often extensive, and very painful. The painful history of the grief experienced amongst people with a developmental disability that begins with the atrocities of the institutions, the Huronia Regional Centre, The Ontario Hospital School, and The Orillia Asylum. The magnitude of such grief and loss has only recently been made public.

There is such an enormous amount of grief and the loss that until recently was unnoticed. Such unacknowledged grief within the developmental sector is far more common than ever imagined, especially when we include that of our direct support workers. Currently their grief is unheard of. Consider for a moment, supporting someone for ten years in their home, and when the supported person dies, cleaning out their room to prepare it for the next person to move in, and doing so without any recognition of your personal grief. Such scenarios play out daily within our developmental sector and just being expected to carry on with the work is the norm.

With that said, the reality remains that the developmental services sector can only benefit from receiving support and guidance from the bereavement support services sector. Such a partnership would help to bridge the gaps and begin dedicating resources towards, training education, and understanding about grief, loss and disability.