Palliative care videos

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.