Palliative care videos

Andrea and David's story

Andrea: It's hard to stop and just look around and enjoy exactly where you are.

In the living room of a suburban house, Emanuel's mother, a white woman in her forties with glasses, sits on a grey sofa. Behind her, a collection of potted plants rests on tables near the windows.

Andrea: And that's the beauty that Emanuel teaches us, because he forces us to stay in the moment.

In the kitchen, Emanuel, a white twelve-year-old boy with curly dark hair sits in a wheelchair. His father, a white man in his forties adjusts a belt on the wheelchair. His mother pours formula into a feeding bag.

Andrea: Emanuel was born under a pretty dark cloud. We had lost our firstborn two months before his birth, and we viewed his birth as a moment of joy, as we called him our ray of sunshine. He wasn't hitting milestones like our first child was.

Emanuel's father is interviewed in the living room.

David: Around 18 months, he started to have seizures. He was diagnosed with a very rare genetic mutation.

Andrea: We were slowly introduced to our local pediatric palliative hospice centre. We were already a little bit familiar with the services provided. They were the ones that supported us through bereavement.

In a hallway in the house, Emanuel's mother lifts him out of his wheelchair. She holds him in her arms and kisses him on the cheek.

David: When the suggestion came up, my mind raced to end of life care and death, and that myth was dispelled pretty quickly.

Emanuel's mother carries him into his bedroom. Later, Emanuel sits on his bed, which has guardrails and a headboard bearing his name.

Andrea: It's all the supports that go into making him have an extraordinary quality of life. He's 12 and a half now. It is unlikely he will walk. It's very unlikely he will talk.

In his bed, Emanuel chews on a red sensory toy while a physiotherapist, a woman wearing a mask, sits him upright.

Andrea: It's hard as a new parent, I think, to not be completely overwhelmed. When he was young, I certainly didn't think I had any resiliency muscle, but I do believe that I have that now.

We have demonstrated repeatedly to ourselves that we're stronger than we ever believed that we are.

A personal support worker, a bald man, holds a large exercise ball behind Emanuel's back. The physiotherapist gently rocks Emanuel side to side to stimulate his back with the ball. Later, the personal support worker lifts Emanuel out of bed.

Andrea: We have a nice circle of care around Emanuel. We have a very supportive teacher and aides that are in the classroom. We have a physiotherapist who comes to the house, and then another big care provider for us is a personal support worker who comes daily. As much as he's caring for Emanuel, for his physical needs, he's also there for his emotional needs.

Emanuel sits on the floor with the care providers. The physiotherapist holds his hips from behind while the personal support worker takes Emanuel's hands and rests them on a large inflatable ball.

David: Palliative care isn't just solely centered on the patient. It's also about caring for us, as the primary caregivers. For you to take care of your child with issues, you need to take care of yourself, too. That support that we get helps us strike a balance where we're able to not just care for Emanuel, but also for our youngest son, Florian, who needs— who needs our love and attention, too.

In the living room, Emanuel's brother, Florian, a white ten-year-old boy, plays a piano while Emanuel rocks and dances in his wheelchair.

Andrea: We have a little guy who loves his older brother unconditionally.

Florian is interviewed on the living room sofa.

Florian: I like to put Manu next to the piano, so that I can play for him. Sometimes he dances.

David: I think that having Emanuel as a brother has been a real blessing for him to see that there's more to life than getting ahead. It's caring for others, especially the vulnerable. Palliative care isn't just about looking after a body. It's caring for the soul, too.

Andrea: What keeps me going is just knowing that I'm not alone, and that there are supports out there.

In the kitchen, Emanuel's father places a hand on Emanuel's forehead while he feeds him with a spoon.

David: Normally, people would look at Emanuel and see a child who can't do lots of things. He doesn't speak with us. He doesn't acknowledge us. But there's something really special when he starts to smile and laugh. We stop what we're doing.

Emanuel and his mother smile as they hug each other. His father sits beside them with a grin.

Andrea: It's taken a long time for me to come to that point and see the joy that he brings. I think he's probably one of the most special people that anyone will ever get to meet in their lives.

Text on screen: See how a palliative approach to care can improve quality of life. Canada-dot-CA-slash-palliative-dash-care. Logo for the government of Canada. A Canadian flag waves over the final "A" of the word Canada.

Lillian's story

In a house, a middle-aged black woman with shoulder-length hair and glasses sits in a living room.

Lillian: Even though life is not the way I thought it would be, this life can still be good.

Outside of her home, the woman pushes a wheelchair with her son, Mirai, a black, ten-year-old boy draped in a blanket. Behind them, two women wave at them as the ramp of a school bus rises.

Lillian: My son MJ, or Mirai, he has a condition known as Dravet syndrome. It's a very rare form of epilepsy. Unfortunately for Mirai, he is on the more severe end. So now, he's total care.

Inside, Mirai's mother stands in the hallway and speaks with a nurse. Mirai sits between them with a wide smile.

Lillian: He went into status epileptic. I remember that day like it was yesterday, right. The damage to his brain was quite significant.

In the kitchen, printed photos of Mirai are posted on the fridge surrounding a quote that reads: I have good plans for you, I don't plan to hurt you. I plan to give you hope and a good future. Jeremiah, 29:11.

Lillian: He had lost everything. I went to the hospital with a boy that could walk and talk, and I came out with a brand new baby.

In Mirai's room, his mother carries him in her arms and lowers him onto a bed.

Lillian: The palliative care team was going to get involved. And I just remember thinking, does that mean, like, the end is coming soon? Why are they involved?

In the hallway of a children's palliative care facility, an Admissions and Care Coordinator, a white woman with blonde hair, walks alongside Mirai's mother as she pushes Mirai in his wheelchair.

Lillian: They did like an orientation and explained to me, like, the different roles of what they do, and it had nothing to do with the end coming sooner. It was just now an additional support that I had to my team.

In Mirai's room, his mother massages his legs while he lies on his bed. Later, she sits him upright and kisses him on the nose.

Lillian: When everything happened, I just wanted my son back. I wanted my son that was walking and talking back. So I think what I realized was that I had a very narrow vision of, I wanted to get my son back at any cost. However, at that cost came, we were not living. God forbid if something was to happen, what memories do you have? And that's when I realized, you know what, this has to shift. You may never get the old Mirai back.

A sign on Mirai's bedroom door has the letters MJ surrounded by sparkling lightning bolts and other decorations. Mirai lies on the bed with a breathing mask over his nose while his mother pumps a blended liquid through a syringe and feeding tube.

Lillian: They had a group workshop on grief, and just understanding that it's okay for me to kind of be grieving what my son is going through. It's okay to have a bad day, but those bad days do not define who I am. I've also been able to meet other families that are going through something similar. Knowing that we have that community and we have that support, the impact has been very, very positive.

Another sign bears a heart-shaped photo of Mirai, surrounded by words like gentle, funny, stoic, and inquisitive. At the side of the bed, Mirai rests his head against his mother's shoulder as she embraces him with a smile.

Lillian: I can honestly say I am now pretty comfortable with the situation. I wake up very early in the morning. I try to go on my bike.

At home, Mirai's mother sits in a leather recliner, reading a book. Later, she sits with her eyes closed as a guided meditation plays on her phone.

Lillian: I do my reading, meditate. I'm very much into mindfulness and being intentional about my day. Overall, the palliative approach has made a huge difference in our lives, from respite to social work to the group activities. I just don't know where I would be without it. Again, it's coming to that realization that it's okay for me to say, I am getting a break. He's in good hands.

And that doesn't make me a bad mom.

At the children's palliative care facility, dozens of colourful lights illuminate a room.

Mirai's mother stands with the Admissions and Care Coordinator in the doorway.

Lillian: You don't know what the future's going to bring. Yet, I know that it is my faith that keeps me going.

Mirai grins as he rocks back and forth in a small hammock, surrounded by the lights. His mother beams as she watches him.

Lillian: Even if Mirai can't talk back to me, he can hear me. And when he hears my voice, he smiles. And that alone, that is something, right? So finding things to be grateful for has accumulated into me living a joyful life.

Text on screen: See how a palliative approach to care can improve quality of life. Canada-dot-CA-slash-palliative-dash-care. Logo for the government of Canada. A Canadian flag waves over the final "A" of the word Canada.

Glorianne and Sebastien's story

At a kitchen counter in a house, a white man in his thirties with a thin beard connects a silicone feeding tube to a syringe. He presses the plunger and a blended liquid moves through the tube.

Sébastien: With Éveline, some things are still a mystery. There's no instruction manual. Every now and then we get to a point where we'll try something, we'll see if it works, and we adjust as we go along.

In the living room, a white woman in her thirties wearing a purple cardigan sits on a grey sofa. Two abstract paintings hang on the wall behind her.

Glorianne: Éveline is our second child. We realized that something wasn't right. When she was nine days old, that's when we shifted from, oh, breastfeeding seems to be a bit of a challenge to OK, this isn't working, she needs to be tube fed, we need professional help.

A series of photos shows baby Éveline lying in a hospital crib with medical tubes and monitors over her nose and face. She cuddles with a knit octopus plush.

Sébastien: They approached us, they told us we'll do genetic testing. They suspected certain degenerative diseases—some of them terminal.

Glorianne: I remember coming home in a kind of fog. I don't know how I got there. So when they told us, no, it's none of those things…

Another photo shows a slightly older Éveline lying in a hospital bed with a breathing mask over her face and a plastic tube connected to her arm.

Glorianne: That's when I said, life is good and we're going to be there for her through this, no matter where it takes us. She's going to grow up with us. We now know that she has an extremely rare neuromuscular disease.

In the kitchen, Éveline's mother packs a plastic feeding bag with the blended liquid into a black backpack. Éveline's father hangs the backpack over the back of a wheelchair.

Sébastien: Shortly after we got the diagnosis—I think it was in the intensive care unit—the palliative care team showed up.

Glorianne: The word "palliative" put me on the defensive right away, but in fact, it's not a negative thing. It's not only about providing end-of-life care: it's also about providing care at every life stage to someone living with a complex medical condition.

In a park, Éveline, sitting in the wheelchair, plays at a raised sandbox with her older brother, a boy wearing a green jacket. Later, Éveline's father pushes her up the ramp of a jungle gym, where she turns a mounted toy wheel.

Glorianne: As parents, we're not alone. There are professionals who can advise us on what they think is best for Éveline.

Sébastien: Being a parent while also being a nurse is challenging, it's demanding. You need lots and lots of advice. We speak regularly with the nephrologist, with the dietitian, with neuromuscular specialists.

In a children's palliative care facility, Éveline holds hands with a healthcare professional as they cross a hallway.

Glorianne: There are times—in winter, for instance—when inhalation therapy is particularly important.

In an activity room, Éveline takes a bottle of glue from a cupboard and pushes the wheels of her chair to turn around.

Glorianne: Every three months, the technical support service adjusts the wheelchair, because of course, children grow. Every healthcare professional is there to make her daily life as easy and comfortable as possible.

At a table, Éveline makes crafts with her parents and healthcare professionals.

Glorianne: I call the palliative care centre here the day camp. Éveline loves going to her day camp for a few days, but in fact, it gives the adults a break.

Sébastien: It's one of the few places where she can receive medical care and also take part in related activities. And at the same time, we can do things with our family, with Victor.

A Recreation Therapist makes crafts with Éveline's brother.

Sébastien: She's a girl with a very strong personality. She has a strength, a zest for life.

Glorianne: Éveline is a really funny, mischievous child. She'll sneak up behind us and startle us. She'll open doors, she wants to play. Something we discovered recently that made the whole family happy is that there's a local swimming pool not far from where we live. Éveline loves playing in the water.

At a community pool, Éveline's mother lowers Éveline, wearing a life jacket and water wings, into the water.

Sébastien: And at the swimming pool, it's magical. She puts together jigsaw puzzles, and we throw the pieces into the water, and she goes after them. She brings them back. She chases her brother in the water, and that interaction is really, really wonderful to see.

Éveline plays with a large floating cube, throwing it back and forth with her parents.

Glorianne: She's just three and a half; she's still very young. It's hard to predict what the future holds.

Sébastien: I just hope we'll be able to do the best we can. Palliative care is something that needs to be talked about, and it needs to be developed, because it gives us a huge amount of support.

Glorianne: It makes daily life more manageable. It makes life easier. There are all these teams and professionals who can make a real difference to our lives as parents, and to the life of our child.

Text on screen: See how a palliative approach to care can improve quality of life. Canada-dot-CA-slash-palliative-dash-care. Logo for the government of Canada. A Canadian flag waves over the final "A" of the word Canada.

Guneet’s story

Guneet: Caring for someone you love, it's not a burden on you.

In a suburban neighbourhood, a young, South-Asian woman jogs down a street lined with houses. Her long dark hair is pulled back, and she wears a grey zip-up hoodie.

Guneet: It brings you joy as well to, you know, be able to support somebody. My grandma's very strong willed.

In a house, she sits on a sofa wearing a pale beige cardigan. The kitchen is behind her.

Guneet: So she tried her best to be able to do everything independently. It was just that over the years after she moved here, she had gotten older and also in some areas, she became weaker, and she couldn't move around as much.

In a bedroom, her grandmother, a South-Asian woman with grey hair pulled back into a bun, grips onto a cane by her bed. Her granddaughter stands watching her.

Guneet: Things that she used to be able to do for herself alone became things that she needed help with.

Because I have such a close relationship with my grandmother…

The granddaughter and grandmother sit on the bed. They laugh after an exchange of words.

Guneet: …my career goals were sort of oriented in that way, you know, at work, we deal with a lot of things regarding older adults and chronic disease and management for their chronic diseases, and at home, we've been through a lot of those same things with her comorbidities, with her chronic disease. She has atrial fibrillation, she has hypertension, so she'll get tired more easily, out of breath, those kinds of things.

The grandmother sits in a wheelchair while her granddaughter combs and braids her hair.

Guneet: There are risks of heart failure. She also has arthritis, and the two shoulder injuries. All of these things make each other complicated. My grandmother also suffered a stroke, it impacted a lot of her mobility.

The granddaughter drapes a blanket with a floral pattern over her grandmother's shoulders, then places an inhaler into her mouth and presses the canister.

Guneet: She needed a wheelchair to move around. She obviously had a lot more medications afterwards. It's hard for one person to essentially take care of all of these responsibilities, things like picking up prescriptions, making appointments, there was physiotherapists…

At a desk by a window, the granddaughter opens a laptop and looks over a spreadsheet.

Guneet: …visits from the speech language pathologist, we got PSW support. The discharge specialist after the hospital directed us to a lot of these supports, but our role was essentially figuring out what kind of care she needed.

When I learned the term early palliative care, I was able to separate it sort of from the definition that I had before, which was just end of life. I learned that it includes care for people like my grandmother who have multiple illnesses that are ongoing, and that are long lasting. That sort of connected those dots for me; that it was not necessarily just about caring for a person at the end of their life, but improving their health and their quality of life.

In the beginning, when she came back from the hospital…

In the kitchen, the granddaughter bakes roti on a small, round skillet over a gas stovetop.

Guneet: I would try to do as much as I could, so that she would have to do as little as possible. I learned to reel it back a little. It made my grandma happier, or more lively, when she was able to be more independent.

She places the roti into a bowl and cuts it into pieces with a fork.

Sitting on the edge of the bed, the grandmother eats over a plate on a small table.

Guneet: I know that that was really important for her.

I'm really grateful to have my friends in my life, I'm able to be vulnerable with them, I'm able to be open with them. And that's in general, just a really great stress reliever and like a source of joy.

I think family is honestly like the core biggest support system. They're able to be there for me whenever I need it. When you're able to bounce responsibilities off of each other, nobody has to necessarily be overwhelmed with anything. It works much better as a team. When you have that love around you, it makes everything a lot brighter.

Text on screen: See how a palliative approach to care can improve quality of life. Canada-dot-CA-slash-palliative-dash-care. Logo for the government of Canada. A Canadian flag waves over the final "A" of the word Canada.

Mary-Lee’s story

Mary-Lee: They sent me home with a box, it said "end of life".

In a basement apartment, a white woman with short grey hair sits in a chair in front of houseplants, a lamp, and an angelic statue. She wears glasses, a black cardigan, and a pearl necklace.

She chuckles to herself.

Mary-Lee: Didn't have much of an expectation for me.

In a the dining room of a house, her daughter, a white woman with light, shoulder-length hair sits in a padded armchair.

Kelly: We were used to mom having kidney disease. We were used to mom having diabetes. We thought we had prepared for cancer. I don't think we were fully prepared for all the complications that come along with it.

Mary-Lee: I was on the chemotherapy pill, it was shutting down my organs, and we didn't realize that at the time.

And they took me off that and I perked up.

Kelly: Her blood pressure got better, her heart rate got better. She had been the strongest we'd seen her in years. When she was feeling better, she thought you don't need palliative care, but now we understand palliative care just means they're there to help.

Mary-Lee: They said I couldn't go back to independent living.

In the apartment, the mother sits watching TV on a leather sofa with her hands resting on her stomach. She picks up a remote and presses a button.

Mary-Lee: I love when people tell you what to do.

Kelly: We found assisted living, thinking that she only had a few months. But surprisingly, that's when she went into remission. So now we had to look at things like what if she's got 10 more years?

Mary-Lee: I was going to run out of money if I stayed there for any length of time. So I was going to move to a regular apartment, and Kelly said, "Oh no, you can't do that".

So they built the apartment for me.

In the apartment kitchen, the mother opens the fridge. Later, she chops vegetables at the counter.

Kelly: This house was meant to be - the elevator was already there. We even had the basic blueprint all ready to go. And a few months mom was in here. She can stay with us as long as she needs to, and we never have to worry about finances or anything like that.

Mary-Lee: And I was so surprised when I came here for the first time after it was built. I walked in the door and walked straight into the kitchen and I went "Wow".

Kelly: There is an easy access to the back door for her PSWs and her personal guests to come. There's the elevator for her to get in and out.

In the kitchen of the house, the mother sits at a counter and looks through a wooden box of teabags. She hands one to her daughter.

Kelly: Finding out about palliative care, that was through the hospital. I have a care coordinator that I can talk to. They've been really great.

The daughter makes a cup of tea and places it on the counter in front of her mother. She watches with a smile as her mother takes a sip.

Kelly: An occupational therapist came out to make sure that we had all the things we needed for mom, you know, grab bars and everything else, so anything that we might have missed.

Mary-Lee: I'm on the palliative care list, because some days I need help even getting dressed and getting put back into bed. But then other times I'm full of energy.

Kelly: The way they explained to me it's not set in stone. Palliative care is there for how much or how little she needs. As much as her health fluctuates, her care can fluctuate with it.

In the living room, the mother and daughter play cards.

Mary-Lee: Yeah, I don't know what I'd do without the help that I get. I don't think I'd be able to manage without it.

Kelly: Embrace palliative care, because it's not the end. It's the helping hand we need. It's to make sure we're not alone - that somebody is there who can guide us through a pretty scary process.

Mary-Lee: I'm really happy now. I'm with my daughter and her husband, and my oldest daughter also moved in here. So it's really nice to have so much of the family all together and my granddaughter lives here too.

The mother smiles brightly.

Mary-Lee: It just makes life easier for me.

Text on screen: See how a palliative approach to care can improve quality of life. Canada-dot-CA-slashpalliative-dash-care. Logo for the government of Canada. A Canadian flag waves over the final "A" of the word Canada.

Mike’s story

Mike: Wake up to a new day. And whatever you have to face that day, we're facing together.

In the bathroom of a house, a white man with grey receded hair grips onto a railing as he rises from a bench in the shower. His wife, a white woman with brown hair tied in a ponytail, helps him up and pats him dry with a towel.

A golden retriever with a toy in its mouth watches them.

Mike: My wife Julie, she is legally blind and a guide dog user.

The woman kisses the man.

Mike: I'm her eyes, she's my muscle. So.

The man sits on a sofa in a living room.

Mike: The twitching, initially, I just thought it was the muscles were just spasming.

A video displays the man's chest and bicep muscles twitching.

Mike: But it wouldn't go away.

Julie: Mike was researching on the internet and he came to me and said: "You know what this probably is. All I can find is…" Sorry. "…the twitching means it's ALS."

The woman sits on the sofa.

Mike: And that's when things got real.

I went to a local walk-in clinic. One opinion to a second opinion to a third opinion. The final straw was a lumbar puncture. And once the results came back from that it was definitive. ALS. So yeah.

Julie: I didn't think my shoulders were strong enough to carry any of this. He was deemed palliative.

The man lays back on the sofa while the woman lifts each of his arms, performing stretches.

Julie: The doctor who took Mike under his wing at the walk-in clinic actually suffers from a neuropathic disease himself. He made sure Mike had everything he needed and got to the right people from there.

Still on the sofa, the man curls his legs one at a time.

Julie: - it just made it easier. It felt like he was in our path for a reason. He even helped him pick his walker.

Mike: It takes a lot of adapting. I have a walker, a wheelchair.

In a hallway, the man walks with a walker. The dog follows behind him.

Mike: I have a small segway that I go for walks in the summertime with the wife and the dog. I'm living with ALS, I'm not dying from ALS. So having a palliative doctor revolves around the quality of life you want to continue to maintain.

Julie: The palliative team provides for us that assurance that each day we have what we need to live the best life we can.

On a sidewalk, the man rides in an electric wheelchair wearing a winter coat. The woman walks alongside him, wearing a winter coat and holding a handle attached to the dog's harness.

Julie: We're actually finding joy now, in every day.

Mike: It's awesome the support that's out there. We have a local hospice here in town, so there is day away programs that I can partake in.

In the house, the woman pulls an oxygen mask over the man's nose and mouth. He sits at a table by a window with plants. The man puts on a pair of glasses and opens a web browser on a laptop.

Mike: You get to play games, you get to converse, you get to laugh. With our men's group, being able to go out, watch a hockey game with some of the guys, go out and play some cards. That is huge mentally. You hear palliative care, it's like okay your…your time is limited. I've since come to realize that that's not necessarily true.

Julie: With the diagnosis of ALS, they tell you two to five years. Everything after five years is a bonus.

In the living room, the man and woman sit on the sofa in front of the TV. The woman's hand is clasped around the man's.

Julie: It's given me an appreciation of the time that's left with Michael. It's been challenging, but rewarding. It's been painful. The darkness comes but it also goes, so the light comes back. You know.

Text on screen: See how a palliative approach to care can improve quality of life. Canada-dot-CA-slashpalliative-dash-care. Logo for the government of Canada. A Canadian flag waves over the final "A" of the word Canada.

Alex’s story

Alex: You don’t really have a choice; it’s just a matter of accepting it.

A young white man with receding red hair and clear glasses sits in his living room.

Alex: I think. And you have to understand that life will never be the same.

We’ve all had headaches, but mine was a headache that wouldn’t go away.

Sitting at a table, he rolls dice in his hands. He plays a board game with his mother, a white woman with long gray hair.

Alex: Even if I stayed in bed, it kept getting worse, to the point where I started vomiting. I started having hallucinations.

Sylvie: He became completely paralyzed on his left side. He couldn’t speak at all.

The white woman with long gray hair is sitting in a kitchen.

Sylvie: And then his condition just got worse and worse.

Alex: I couldn’t even dress myself when we decided to go to hospital. It was my parents who helped me get dressed.

Sylvie: When we got the diagnosis, we didn’t know anything about it.
We’d never heard of Susac syndrome.

We had no choice but to trust the specialists to try and understand, and then see how Alex could cope.

That’s how palliative care came into my life.

The young man and his mother walk on a flat, tree-lined path. They both wear coats.

Alex: I had a physiotherapist, an occupational therapist, a social worker and a speech therapist.

Sylvie: At one point, someone came into the room. And that person was a painter who does volunteer work at the hospital.
She helps patients like Alex and does a bit of art with them.

Alex: I found it hard just to hold my brush straight, because I was on so much medication that I had the shakes.

When you create or paint, you can express your emotions, let them out.

Sylvie: It’s what we call art therapy. It’s a form of palliative care.

Several paintings by the young man are on his desk. He looks at them on by one.

Sylvie: It’s something that helps people who are ill to regain control of their lives.

Palliative care is perhaps a term that I find a little pejorative for most people. It deserves to be known from another angle, another aspect.

Like for my son Alex, to reclaim his life.

Alex: We need to talk, we need to talk about everything, to let these feelings out.

The young man and his mother are playing with their white Persian cat with blue eyes. They both smile.

Alex: You can’t get through it alone. If you have people to help you, it’s essential to accept their help.

Text on screen: See how a palliative approach to care can improve quality of life. Canada-dot-CA-slash-palliative-dash-care. Logo for the government of Canada. A Canadian flag waves over the final “A” of the word Canada.

Biba’s story

Biba: When Ismaël is in crisis, it’s just him and me against the illness, and against the world.

A middle-aged black woman with short dark hair is sitting on a white couch.

Biba: I really see it that way because you feel so alone at times of distress.

When I had Ismaël, I was barely 18. Unexpected, but a beautiful baby, a beautiful gift of life.

In front of a counter, she looks at photographs with her son, a young black man.

Biba: He was about six or seven months old when he had the crisis.

By the time he celebrated his first birthday, we knew he had sickle-cell anemia.

In the old days, when you were diagnosed with sickle-cell anemia, it was a death sentence.

Doctors will tell you that those children don’t live long, and that’s still true today in sub-Saharan Africa.

I took it in stride, and then I swung straight into action mode, listening to what the doctor and the pediatrician were telling me and then finding solutions for my child.

There were times when I had to make decisions for both of us, but they weren’t always the best for him, because I had to leave him behind.

I had to go to school, I had to continue my studies.

I also had to get on with my life as a young woman, and that, all that, is trauma that stays with a parent.

I always say that Canada saved his life; bringing him to Canada saved his life.

Caring for someone living with sickle cell anemia takes a whole team of specialists.

One of the first things they got a handle on was the pain management protocol, and then, straight away, he was taken care of.

Ismaël saw his pediatrician, he saw the hematologist.

He had to see an endocrinologist, and that’s when he was put on the transfusion program.

It’s important to raise awareness and tell people there’s a difference between palliative care and end-of-life care. Palliative care has to start at diagnosis.

It’s ideal to have all these teams working together.

I’d like to see that made more widely available, so that everyone could understand that it’s the best possible framework of care for someone living with a chronic illness.

At first, I told myself, I’m a mother, so I do what has to be done and I look after my child.

But I never thought about the impact that all of it, all the stress, all the anxiety, was having on me, on my health.

Recently, last year, I really felt the weight of it all.

I think it was when Ismaël’s treatment stopped working.

He developed migraines, he has a persistent headache.

Sometimes I go to pick him up and he barely opens his eyes to look at me.

She is sitting alone on a sofa. She stares into space, looking thoughtful.

Biba: And I started to get scared, and I thought maybe this was the end.

I lost sleep, I couldn’t concentrate on my work, I was always sad despite all the beautiful things in the world around us.

I started thinking, what will happen if something happens to him?

Then, when looking on the Internet, I found this centre that offers unconventional therapies. They do group therapy.

They brought together a group of women, all Black women, who were going through a grieving process.

When I went for the interview, they told me I was eligible for that group.

I told them, but I haven’t lost anyone—my son is alive.

At the kitchen table, the woman looks at her laptop open in front of her.

Biba: That was the first time in my life, since Ismaël was born, that anyone had told me I was going through a grieving process.

It makes a big difference, a weight has been lifted, because I’ve been able to put a name to my pain and recognize that the problem was there, it was lying in wait, but that’s because I never dealt with it.

One of the greatest self-discoveries I’ve made is that I don’t have any guilt, remorse or regrets, and I don’t think I’ll have any no matter what, because in going through all this I’ve realized that as a mother, as a parent, I did everything I could.

Text on screen: See how a palliative approach to care can improve quality of life. Canada-dot-CA-slash-palliative-dash-care. Logo for the government of Canada. A Canadian flag waves over the final “A” of the word Canada.

Ismaël’s story

Ismaël: Accepting a chronic illness is always a journey that is never really over.

A young black man is dressed in a mid-length coat. He walks on a bike path lined with slush.

Ismaël: It’s like having an invisible twin with whom you go through life all the time, but whom other people can’t see.

I was diagnosed with sickle-cell anemia when I was six months old.

The young man is sitting on a dark blue sofa.

Biba: Generally, in healthy people, the red blood cells move [through the blood vessels] to carry oxygen.

The man's mother, a middle-aged black woman with short dark hair, is sitting on a white couch. She is dressed in a blue sweater.

Biba: In people with sickle cell anemia, they’re crescent-shaped.

And so they cause blockages.

And when there’s a blockage, the oxygen doesn’t circulate.

The two most devastating symptoms are pain and chronic fatigue.

Ismaël: At home, I had a happy childhood, but a very painful one.

I was still able to have a certain routine, which was my normal.

Even though I was very different from all the other kids.

In front of a kitchen counter, his mother looks at photographs.

Biba: As difficult as it may seem, at the same time, I don’t want to let that control our lives.

So we brought Ismaël up to learn to live one day at a time.

Ismaël: I was about twelve when my mother told me we were moving to Canada.

The first crisis I had after I arrived in Canada had a big impact on me, because it was the first time that I lost the use of my legs because I was in so much pain.

That crisis actually allowed me to get into the health care system and start getting help.

I can’t remember exactly all the specialists we saw.

But there was a whole team of them, including the pivot nurse, with whom we had a lot of contact.

The young man sits at the counter and watches his mother cook.

Ismaël: And then there were all the staff from the hematology department.

At the kitchen counter, they share a meal.

Biba: Like many people, one of the big misconceptions is that when we talk about palliative care, we think it’s only for people who are dying or who have cancer.

That’s just not true.

As far as I’m concerned, it’s the ideal protocol for someone like Ismaël, because it provides two things: long-term management and psychosocial support.

That’s essential for someone living with a chronic, painful illness.

Ismaël: The first time I got psychological help, I was about sixteen.

But in fact, when I was younger, I knew I was ill.

I knew I was different.

My illness always punctuated the family schedule, the rhythm of family life.

But the fact that you feel guilty when you’re ill was something I never realized.

And being able to put my feelings into words was something that came later, being able to identify those feelings, and also taking charge of my illness.

In his room, the young man sits at a desk. He writes in a notebook.

Ismaël: And accepting the fact that I live with an illness or chronic pain.

Illness tends to make you believe you’re alone.

By the time you realize that it’s become so heavy that it’s hard to explain to others how unwell you are.

Having a team, an integrated team whose members talk to each other, would be very welcome, especially for someone like me who lives with a chronic illness.

Text on screen: See how a palliative approach to care can improve quality of life. Canada-dot-CA-slash-palliative-dash-care. Logo for the government of Canada. A Canadian flag waves over the final “A” of the word Canada.