Boozhoo. Wiiji’iwe nindizhinikaaz, Opwaagaanisiniing niindoonjibaa, Thunder Bay nindaa. Makwa dodem. My English name is Holly Prince. I am an Anishinaabekwe and a member of Opwaagaanisiniing, located in Northwestern Ontario. I am an Indigenous scholar and social worker, and have been working in the space of caregiving, dying and death for over 20 years.

Caring for Indigenous Peoples facing life-changing illnesses is a profound responsibility that goes beyond just treating their physical symptoms. It requires a deep understanding of their emotional, social and spiritual needs. Health care settings must prioritize cultural safety and humility, valuing Indigenous Knowledges equally with westernized practices.

For many Indigenous communities, dying is not seen as a medical event, but rather a spiritual journey back to the Spirit World. It is a collective experience in which families and communities come together to support one another in decision-making and care. Community and cultural practices play a significant role in this journey. Cultural safety creates an environment that honours the diversity of Indigenous Knowledges, experiences and practices regarding caregiving, dying and death. It translates into a care setting that embraces a community-centred approach, helps people connect to their land and language, and respects cultural protocols surrounding dying, death, and grieving. This is seen in care plans that are wholistic, aligned with cultural and community practices, and incorporate traditional ceremonies and healing practices.

Cultural humility provides a framework for care providers to engage in critical self-reflection, build trust and address health inequities experienced by Indigenous Peoples. This is reflected in caregivers’ commitment to understanding the ongoing impacts of colonization on Indigenous Peoples, entering spaces with humility and respect, and listening actively to ensure individuals feel empowered and supported.

In conclusion, cultural safety and humility not only honour Indigenous ways of knowing, being, and doing but also enrich the overall experience for families and communities. By working collaboratively and respectfully, we can help ensure that the journey back to the Spirit world for Indigenous Peoples and their family and community caregivers is met with care, dignity, and deep respect.

Miigwetch.

Throughout the conversation, Tiara returns to a simple truth: excellent care begins with dignity. At one point she reflects, “Keep yourselves informed, because what’s the most important thing we can do? Respect human lives and provide people with their dignity when they’re having these challenges. And the thing is, it’s going to happen to all of us.” It’s a reminder that palliative care is not abstract, it is personal, universal, and deeply human.

The discussion also highlights the broader context shaping this work. Canada is moving toward a ratio of two workers for every retiree by 2035. This isn’t a distant projection; it’s a demographic shift already reshaping classrooms, care teams, and communities. Career colleges are on the front lines of this response, training the caregivers who will sit with people on the hardest days of their lives.

That’s why funding matters. When programs face cuts, whether through visa caps, reduced grants, or shifting policy environments, the impact is immediate. We don’t just lose students. We lose capacity. We lose readiness. We lose dignity at the bedside.

Tiara also speaks about the skills that truly define excellent care. When asked what the most important skill is for someone working in long‑term care, she doesn’t name a clinical procedure. She says:

“The most important thing they can learn is to be able to listen. Listen to the person whom they’re caring for and observe how what they’re doing is impacting that person and their families.”

This ability to listen, notice, and be present is what separates those who simply manage tasks from those who genuinely thrive in this field. And, as Tiara emphasises, these skills can be taught. They are being taught right now in career college programs across Canada.

That’s where Life and Death Matters enters the PSW curriculum. Module Nine introduces learners to the palliative approach, helping them integrate everything they’ve learned through a new lens.

“They take everything they’ve learned, and now they look at it through this lens, the lens of integrating a palliative approach. What we’re seeing is that it’s helping them understand their role in the overall scheme of things and giving them that foundation of confidence that they’ve committed to the right path.”

That confidence, the sense that they are ready, prepared, and entering a career that matters is the outcome every college wants for its graduates.

For more than 15 years, Life and Death Matters has partnered with colleges across Canada to bring palliative care principles directly into PSW, HCA, and continuing care training. The question for college leaders isn’t whether their students will encounter palliative care situations. They will. The real question is whether programs are preparing learners with the knowledge, emotional tools, and framework to show up well when that moment comes.

Tiara’s message is clear: stay informed, stay engaged, and if you have the power to shape what happens next, use it.

Listen to the full conversation on Apple or Spotify.

This month, we celebrate the heart of care, the skilled, relational, emotionally demanding work that makes dignity possible.

This theme builds on our recent reflection, Palliative Care Everywhere: Caring for the Grief of Those Who Care, which explored the emotional labour caregivers carry. It also connects to our webinar that continues this conversation and deepens our understanding of caregiver grief.

Caregiver Recognition Is More Important Than Ever

This year brings a clearer picture of just how essential and irreplaceable PSWs, nurses, and hospice palliative care interprofessional teams are in Canada’s health and social care landscape. The pressures facing professional caregivers, the changing needs of our communities, and the growing national attention on palliative and end‑of‑life care all point to one truth. Recognising and supporting all caregivers is more important than ever.

Several factors highlight this urgency:

1. A rapidly aging population
More than 7 million adults in Canada are now aged 65+, increasing the demand for skilled caregivers across all settings. This demographic shift makes the need for a strong, supported workforce clearer than ever.

2. Pressures on nursing and interprofessional care teams
Healthcare professionals across the country continue to face rising workloads and staffing challenges. Their leadership in compassionate, skilled care is essential, and they need support, recognition, and resources to continue this work sustainably.

3. National recognition through federal support
In 2026, the Government of Canada introduced a temporary Personal Support Worker tax credit, offering 5% of eligible earnings up to $1,100 for the 2026–2030 tax years. This is an acknowledgment of the vital role PSWs play in home care, long‑term care, and hospice.

Together, these realities remind us that honouring the work of professional caregivers is not just symbolic but that it is necessary if we want to sustain the workforce.

The Heart of Care: What PSWs, Nurses, and Hospice Palliative Care Teams Bring

Across roles and settings, all caregivers share a commitment to presence, dignity, and connection. They bring skills that define excellent care, the human and relational abilities that can often go unseen, as well as the clinical, practical, relaitional and communication skills that support all people every day.

These essential skills include:

• Listening with intention
• Noticing subtle changes
• Supporting comfort and meaning
• Communicating with clarity and compassion

These key skills are at the centre of the palliative approach that focuses on whole‑person care, emotional support, and quality of life.

PSWs: The Backbone of Daily Care

PSWs provide the bulk of hands‑on care in long‑term care, home care, and hospice. Their work is skilled, relational, and deeply human.

To support PSWs in this essential role, palliative care education for PSWs is more important than ever. Programs like PACE for PSWs strengthen confidence, communication, and emotional readiness – the foundations of high quality hospice palliative care.

Nurses: Leaders in Compassionate, Skilled Care

Nurses guide families through uncertainty, manage symptoms, coordinate care, and support emotional wellbeing. Their work in palliative and end‑of‑life care requires clinical expertise, communication skill, and deep compassion.

As pressures on the nursing workforce grow, so does the need to honour their contributions and ensure they have the tools, teams, and support they need to continue this high quality care.

Hospice Palliative Care Teams: Interdisciplinary Care at Its Best

Hospice Palliative Care teams bring together PSWs, nurses, physicians, social workers, spiritual care providers, volunteers, and others to create spaces of comfort, meaning, and dignity.

They embody the palliative approach in action with whole‑person care being delivered through teamwork, communication, and compassion.

This aligns with the national vision of Palliative Care Everywhere, where palliative values guide care across all settings.

Seeing the Emotional Labour of Care

Caregivers carry both their own grief and the grief of those they support. This emotional labour is often invisible, yet it shapes the experience of care for everyone involved.

Building grief‑literate teams is essential. It helps caregivers feel understood, supported, and prepared for all the realities of their work.

Our webinar, Palliative Care Everywhere: Caring for the Grief of Those Who Care, explores this in depth and offers practical ways to support caregiver wellbeing.

How Life and Death Matters Supports the Heart of Care

At Life and Death Matters, we are committed to strengthening care teams across Canada through:

• Palliative care education for PSWs
• Skills‑based teaching tools for workplace educators and instructors
• Resources that build emotional readiness and communication skills
• Webinars, blogs, and real stories
• Support for teams across all settings including long‑term care, home care, hospital and hospice

Our work is grounded in the belief that quality care begins with feeling prepared, supported, and connected.

Closing: A Month of Gratitude

This month, and every month, we honour the PSWs, nurses, and hospice palliative care teams who bring a palliative approach with compassion, dignity, and humanity to all people across Canada.

To every caregiver: thank you.
For your presence.
Your skill.
Your courage.
And the heart you bring to care.

The Promise That Started It All

I don’t think you ever truly choose hospice palliative care. For me, it has felt like something I’ve been becoming my whole life.

I still remember being seven years old, lying in a hospital bed after breaking my leg. The room was dark, the hallway quiet, and I felt completely alone. When I called out, I wasn’t met with comfort but correction. I remember the feeling more than the words—the sharpness of being unseen. In that moment, I made a quiet promise to myself: If I ever became a nurse, I would be different.

I didn’t know then that this promise would shape the next 35 years of my life.

Choosing to Stay

Being a hospice palliative care nurse for me is about walking into rooms where there is grief, uncertainty, and sometimes silence—and choosing to stay. Not because I can fix what’s happening, but because I know presence and witness matters.

So much of this work lives in the in‑between spaces: the pause before a difficult question, the breath someone takes before telling the truth, the story a person needs to share one more time.

I’ve cared for people across the life span; saying goodbye to a new life in a neonatal intensive care unit to older adults closing long, complicated chapters. The circumstances shift, but the human need remains constant: to be seen, to be heard, to know they matter.

The Unseen Work of Caregiver Grief

Lately, I’ve been thinking more about the grief we carry as caregivers. Not the dramatic, singular losses that make headlines, but the quiet, cumulative ones that settle into the body over time.

The grief of walking with someone as their story changes. The grief of holding space for sorrow that has nowhere else to go. The grief of caring deeply, again and again, without always having a place to set it down.

This is, I feel, is the unseen work of palliative care—the emotional labour that rarely shows up in job descriptions but shapes us profoundly. Naming it matters. When we call it grief, we honour it. We make it something we can tend to, rather than something we silently endure.

Care as a Collective Practice

One of the greatest truths this work has taught me is that none of us can do it alone. The most meaningful care I’ve witnessed has always been collective—nurses, PSWs, physicians, social workers, spiritual care, volunteers, families, communities—each offering what they can, each holding a piece of the whole.

When it works well, it feels almost like a well functioning family, gathered around a person and each other, steadying themselves for whatever life and death bring. This is why grief literacy matters. When teams and leaders recognize grief as part of the work, we reduce stigma, create space for honesty, and build practices that protect the workforce.

Small Rituals That Hold Us

Sustaining this work doesn’t require grand gestures. Often, it’s the smallest practices that keep us whole: a moment of silence at shift change, a huddle where someone can name what they’re carrying, a few minutes of reflection after a particularly hard event.

These are not extras. They are the scaffolding that allows us to keep showing up with compassion.

Passing It On

Now, as I spend more time teaching and mentoring, I think a lot about what we pass on. Not just knowledge, but a way of being—how we sit with people, how we listen, how we honour what matters most.

Presence is a practice. It can be taught. It can be protected.

Honouring Those Who Care

This May, as we honour Nursing Week, PSW Day, and National Hospice Palliative Care Week, I want to celebrate the people who work and live in these tender, difficult spaces—and also commit to caring for them.

This work has shaped me, humbled me, and reminded me again and again, that the most meaningful care is the care we give each other.

This year, our focus brings together everything we care deeply about: compassionate community care, real conversations, and practical tools that help people speak for themselves – long before a crisis. These conversations are also essential resources for palliative care, helping teams understand what matters most so care can align with a person’s values.

Across Canada, 80% of people agree that planning for their future healthcare is important, yet only 17% have documented their wishes¹. ACP Month is our reminder that these conversations matter, and that they can begin gently, simply, and with the people we trust most.

What Is Advance Care Planning?

Advance Care Planning is a values‑based process that helps you think about, talk about, and document what matters most for your health and personal care.

According to Advance Care Planning Canada¹, Advance Care Planning helps you:

• Think about what is important to you
• Learn about the care you want
• Choose decision‑makers you trust
• Share your wishes so the right people know what you want
• Record your preferences and substitute decision‑maker(s)

ACP is part of life planning, just like preparing a will or naming beneficiaries. It helps ensure that the care you receive reflects your values, beliefs, and preferences. It also strengthens compassionate community care by helping families, caregivers, and healthcare providers understand your wishes.

Who Is Advance Care Planning For?

ACP is for everyone, not just older adults, not just people living with illness, and not just those nearing end of life.

It is for:

• Adults of any age
• People living with chronic illness
• Caregivers and families
• Personal Support Workers (PSWs) and healthcare providers
• Communities building compassionate care networks
• Anyone who wants their voice to guide their care

ACP is also a vital part of resources for palliative care, helping teams understand what matters most, so care can be aligned with a person’s values.

If not you, who? If not now, when?

Why Advance Care Planning Matters

Across Canada, organizations like Advance Care Planning Canada, Speak Up Ontario, and Canadian Virtual Hospice,are helping individuals, families, and care teams understand the heart of ACP:

• Clarifying values
• Naming what matters
• Choosing who will speak for us if we cannot
• Reducing stress for loved ones
• Supporting care that aligns with our wishes
• Strengthening compassionate community care
• Ensuring palliative care teams have the information they need to honour preferences

Advance Care Planning is part of life planning and can help everyone, including healthcare providers, to understand your values so that the care you receive respects your wishes and preferences. It is also one of the most important resources for palliative care, ensuring that care teams have the information they need to support you with dignity and clarity.

A Story That Started With Listening

In our recent blog, Speaking for Myself: What My Daughter Taught Me About Advance Care Planning, Maria shared a moment that surprised her, a moment where listening, without assumption, changed everything.

It’s a reminder of something simple and profound:
ACP begins with listening.
Not with paperwork.Not with perfect words.
Just listening.

The Cookie Jar Conversations: A Webinar About Real ACP Dialogue

On April 16 2026, ACP Day, some of our team at LDM Tiara, Kath, Maria and Michael will gather for The Cookie Jar Conversations.

We’ll explore ACP through real conversations with each other, showing how everyday moments can open the door to deeper dialogue about care, choice, and who we trust to speak for us.

And we’ll be using our Advance Care Planning Conversation Cookies to help spark those conversations.

Care Planning Cookies: Small Prompts, Big Conversations

Sometimes the hardest part of ACP is knowing where to begin. That’s why we created Advance Care Planning Conversation Cookies² that act as simple, gentle prompts to help people reflect on their values and share their wishes.

These cookies are one of our tools for compassionate community care, because they make ACP feel human, approachable, and even warm. They are also a practical, accessible resource for palliative care, helping families and care teams start conversations that matter.

One question can open the door.

One cookie can start the conversation.

One moment of curiosity can change everything.

Explore the cookies and bring them into your home, workplace, or community.

Our Top Ten ACP Tips for PSWs Who Care

Here are our top ten ACP tips for PSWs that are simple, human, and grounded in everyday practice:

1. Advance Care Planning isn’t about forms.
   It’s about conversations and listening without assumption.
2. “If not you, then who? If not now, when?”
   ACP begins with speaking and listening from the heart.
3. Sometimes the most loving thing we can do is listen even when the answer surprises us.
4. One conversation can change everything.
   One question can open the door. Sometimes, all it takes is one Care Planning Cookie.
5. Advance Care Planning is a gift to ourselves and to the people who may one day need to speak for us.
6. Real stories. Real lessons. Real conversations about what matters most.
   Listen, then start one of your own.
7. You don’t need the perfect words just the willingness to ask.
8. If you don’t speak for yourself, someone else will have to.
   ACP helps ensure your voice is heard.
9. PSWs hear what often goes unsaid.
   ACP honours those quiet truths of fear, hope, and what matters most.
10. You don’t need to have the answers.
    You just need to listen and help others be heard.

These tips reflect what PSWs already do so well: care with compassion, presence, and deep respect for the people they support.

Where to Begin: Trusted ACP Resources Across Canada

If you’re ready to take the next step, these national resources offer tools, guides, and conversation starters – all essential resources for palliative care and compassionate community care:

• Advance Care Planning in Canada
  https://www.advancecareplanning.ca
• Speak Up Ontario
  https://www.speakupontario.ca
• Canadian Virtual Hospice
  https://www.virtualhospice.ca
• Canadian Government: Implementation Guidehttps://www.canada.ca/en/health-canada/services/health-care-system/reports-publications/palliative-care/implementation-guide-advance-care-planning-canada-case-study-two-health-authorities-2008.html

This ACP Month, Start With One Small Step

Whether you read a story, attend a webinar, or open a cookie, ACP begins with a single moment of curiosity:

If not you, then who.
If not now, when.

You don’t need perfect words.
You just need to begin and to listen.

References

1 https://www.advancecareplanning.ca/programs/acp-day/

2 https://lifeanddeathmatters.ca/product/care-planning-cookies/

Advance Care Planning Day is often framed as a reminder to complete forms or make decisions “just in case.” But for me, ACP has never been about paperwork. It has always been about conversations — the brave, sometimes uncomfortable ones that ask us to listen more deeply than we think we need to.

One of those conversations happened after the Humboldt Broncos bus crash.

Like so many Canadians, I was shaken by the suddenness of that tragedy. Young people on their way to do what they loved. Ordinary futures interrupted without warning. As a parent, I felt a heaviness that lingered, and it stirred something urgent in me — the need to talk with my then 18‑year‑old daughter about values, wishes, and what mattered to her if the unthinkable were ever to happen.

I thought I knew what she would say.

Organ donation had always felt, to me, like a natural expression of generosity and care for others. It aligned with my values and my understanding of finding meaning even in loss. Quietly, confidently, I assumed my daughter felt the same way.

She didn’t.

While we spoke the horrible tragedy and what one of the family’s chose for their son ,the conversation turned to her and what she would want and she told me — clearly and calmly — that she did not want her organs donated. It stopped me short. It flew in the face of what I thought she would want, and if I’m honest, what I wanted her to want.

In that moment, Advance Care Planning became very real.

ACP is not about persuading people to make the “right” choices — or my choices. It’s about making space for their choices, values, and goals, even when they surprise us, even when they challenge our own beliefs. That conversation taught me that listening isn’t passive. It requires restraint, humility, and a willingness to set aside assumptions we didn’t even realize we were carrying.

One of the strongest messages we return to in the The Cookie Jar Conversations; Getting personal about Advance Care Planning Conversations

podcast is this: if you don’t speak for yourself, someone else will have to. And they will do their best — but they may not know what you know.

That’s where the question comes in: If not you, then who?

Advance Care Planning is about understanding who would speak for you if you couldn’t, and helping them understand what matters most to you. Not just what treatments you’d want or refuse, but what quality of life means, what you value, what you fear, and what you hope for.

Another lesson we explore in the podcast is that ACP doesn’t wait for the “right time.” Serious illness. Old age. Crisis. Those are the moments when these conversations become hardest — not easiest.

So we ask another important question: If not now, when?

The conversation with my daughter changed how I approach every ACP discussion — as a mother, a facilitator, and a listener. It reminded me that love doesn’t require agreement. It requires respect. And that one of the greatest gifts we can give the people we love is the willingness to truly hear them.

Every year on April 16, Advance Care Planning Day invites us into these conversations. It’s a national, gentle nudge to talk — not once, not perfectly, but honestly. For Personal Support Workers, families, parents, and caregivers, these conversations often begin quietly: a comment about fear, a hesitation about treatment, a simple statement like, “I don’t want to be a burden.”

These moments are invitations.

ACP is not about having all the answers. It’s about being willing to ask the questions — and then listen.

This Advance Care Planning Day, I invite you to listen to the The Cookie Jar Conversations; Getting personal about Advance Care Planning Conversations podcast — and then do one simple thing: start a conversation. You don’t need the perfect moment or the perfect words. Sometimes all it takes is one gentle prompt — Care Planning Cookies — to open the door.

After you listen, pick a cookie and ask it around your kitchen table, during a walk, or with a colleague or client:

Who would you trust to speak for you if you couldn’t speak for yourself?
What matters most to you if your health changed suddenly?
What is one thing you want people to understand about you?

Let the answer surprise you. Let it challenge you. Let it teach you how to listen.

Because Advance Care Planning isn’t about getting it “right.”
It’s about showing up — with curiosity, humility, and care.

If not you, then who?
If not now, when?

Sometimes, all it takes is one conversation.
And sometimes, all it takes is one cookie to get things started.

This blog looks more closely at who young carers are, the roles they take on, and how caregiving shapes the wellbeing, identity, and opportunities. It also explores the strengths they carry, why so many remain unseen, and how a palliative approach can better support them. Together, these threads help us look ahead to how we can continue championing young carers beyond March.

Young carers support family members living with illness, disability, mental health challenges, or age‑related needs, often quietly, unseen, and without the recognition or support they deserve. Their experiences remind us that care must extend beyond the individual to the whole family. They also show how communities that understand, and uplift young carers become stronger, more connected, and more compassionate.

A palliative approach can strengthen this support by recognizing the needs of young carers early, involving them in age‑appropriate ways, and ensuring their wellbeing is considered alongside the person receiving care. It also helps families access palliative care resources that ease pressure, improve communication, and support young carers more safely and sustainably.

Who Young Carers Are and the Roles They Take On

Across Canada, an estimated 1.25 – 1.9 million young people provide meaningful care at home¹. Many begin as early as age eight². Their roles vary widely, but often include:

• Helping with personal care
• Supporting mobility or medications
• Providing emotional support
• Managing household tasks
• Translating, advocating, or navigating services
• Caring for siblings while a parent is unwell

Many young carers provide 6+ hours of care per week, and some provide 20+ hours or more¹. Despite this, most remain unrecognized by schools, health systems, and social services³.

Their contributions are essential. Their visibility is not.

How Caregiving Shapes Young People’s Wellbeing, Identity, and Opportunity

Young carers often describe a mix of pride and pressure. They love the people they care for deeply and they carry responsibilities that can shape every part of their lives.

Wellbeing

Research⁴ shows young carers are at higher risk of:

• Stress and emotional exhaustion
• Loneliness and isolation
• Anxiety and depressive symptoms
• Low self‑esteem
• Limited time for rest or physical activity

Identity

Caregiving can shape how young people see themselves²:

• Growing up faster than peers
• Feeling responsible for keeping the family functioning
• Balancing childhood with adult‑level tasks
• Navigating complex emotions of love, worry, guilt, pride

Education and Opportunities

Young carers often face barriers that their peers do not⁴:

• Missed school or reduced concentration
• Difficulty participating in extracurriculars
• Less time for friendships
• Limited space to plan for the future
• Fewer opportunities to explore interests or career pathways

The Strengths Young Carers Carry

While the challenges are real, young carers also develop remarkable strengths³:

• Deep empathy and emotional intelligence
• Strong problem‑solving skills
• Resilience and adaptability
• Maturity beyond their years
• A powerful sense of purpose and connection

These strengths deserve recognition and celebration. But they should never come at the cost of wellbeing or opportunity.

Why Young Carers Remain Invisible

Despite their numbers, young carers often go unnoticed. Many don’t identify themselves as “carers” as they’re simply helping family. Others fear stigma or worry about what might happen if they speak up. And too often, systems are not designed to identify or support them³.

In Melody’s story, she reflects on how even close friends and teachers never fully understood the caregiving responsibilities she carried. This reminds us how easily young carers’ experiences can remain hidden in plain sight. Compassionate communities can help break this invisibility by creating environments where caregiving is recognised, talked about, and supported.

This invisibility means young carers frequently miss out on the support and resources that could make a meaningful difference.

How a Palliative Approach Can Better Support Young Carers

A palliative approach offers a compassionate, family‑centred way to support young carers and the people they care for. It focuses on communication, anticipatory guidance, emotional support, and practical strategies that reduce the caregiving load. It also connects families with palliative care resources that can ease pressure and improve quality of life. These resources help families understand illness, navigate decisions, and share the caregiving load more safely¹.

Using the PAss the PIE framework, professionals can better meet young carers’ needs:

• Prepare – Help young carers understand what to expect and what is not their responsibility.
• Assess – Identify their caregiving roles, stressors, and support needs.
• Provide Information – Offer clear, age‑appropriate explanations about illness, symptoms, and care tasks.
• Empower – Connect them with resources, respite, peer support, and school accommodations.

This month’s first young‑carer story shows the impact of this approach. In Saige’s story we see how professional support eased her daily load, restored balance, and brought moments of relief and connection back into family life.

Young Carers Action Day: A Call to Recognize and Support

11 March is Young Carers Action Day, a powerful reminder that young carers deserve recognition, support, and fair futures⁴.

This day is a call to change that. A call to recognize young carers. A call to support them. A call to build systems that give them the futures they deserve.

This year’s Young Carers Action Day theme ‘Fair Futures for Young Carers’ is a reminder that no young person should have to choose between caring for someone they love and reaching their full potential⁴.

Closing: Honouring Young Carers, Today and Every Day

This month we honour the courage, resilience, and love that young carers bring to their families every day. Their stories, shared in this month’s blogs, remind us that behind every caregiving role is a young person who deserves support, understanding, and opportunity.

Life and Death Matters remains committed to advocating for young carers, amplifying their voices, and promoting a palliative approach that supports the whole family. This work strengthens the compassionate communities that surround them and ensures families can access the palliative care resources they need¹. By continuing to build compassionate communities and expanding access to palliative care resources, we can create environments where young carers feel supported, valued, and never alone.

References

1. Canadian Centre for Caregiving Excellence. RISEUP Toolkit.
2. Young Caregivers Association. Who Are Young Caregivers?
3. Canadian Centre for Caregiving Excellence. Young Caregivers: Invisible No More.
4. Carers First (UK). Young Carers Action Day 2026 – Fair Futures for Young Carers.

In September 2022, I became a primary caregiver for my grandpa after he was diagnosed with stomach cancer. My grandpa was not only like another parent to me, but he was also my best friend. In 2018, I was diagnosed with anorexia which led to a complicated relationship with my parents at the time. A year after that, my grandma passed away, leaving my grandpa living alone. Since my grandpa and I were both in a place of feeling isolated and were struggling, we really leaned on one another, especially after Covid hit. I would stay over at his house where we would cook meals together, have movie marathons, listen to music, and play cards. When he was diagnosed with stage four cancer, I felt lost. I wasn’t sure how much time we would have left together, so I wanted to make sure we made the most of it. However, with my grandpa becoming sicker, he eventually moved in with me and my parents, where we took care of him 24/7. With both of my parents working full time and my sister living in a different city, I would take on care duties during the day. These duties included administering medications, changing my grandpa, taking him to the washroom, feeding him, and monitoring him. All a sudden my relationship with my grandpa had changed. I no longer felt like his granddaughter and best friend, but rather his full-time caregiver.

A week before he passed away, my grandpa was placed into palliative care. It was here where I felt some of the stress of being a caregiver lifting. I was devastated, knowing this meant he was no longer well enough to live at home. However, it also gave us a chance to gain back our previous granddaughter-grandfather relationship. At the hospital, I would stay with him every night, as the staff set up a cot for me beside his bed. During the day, we would watch TV, play cards, talk, laugh, and listen to music. It felt like the good ole days again. One day I even brought a DVD of our favourite movie, and the hospital staff was kind enough to set up the DVD player for us to watch it. The doctors and nurses were incredibly kind and felt like they were a part of the family. They didn’t just take great care of my grandpa, but also looked after me, especially on particularly emotional days. In the mornings, my mom would stop by before work, when I would grab breakfast and bring it back up so we could eat together. One morning before my mom left, she joked with me and my grandpa that this was my college roommate experience, as I wasn’t in school at the time. This was funny, but also very true. It was the most relaxed I had felt in a long time. After less than a week of being in palliative care, my grandpa passed away. Once again, I felt lost.

Four years later, I feel like I’ve found myself. I’m a full-time student, enjoy advocating with other young caregivers, and have a great relationship with my parents. When I look back at my caregiving experience, there was a lot of pain and devastation. However, one of the moments I look back fondly at during this time, is the “college roommate experience” I got to share with my grandpa.

A day in my life caregiving for my mother was very packed and heavy for me and my
brothers, and once we got a PSW to help out, it made a huge difference. My mother was
diagnosed with ALS in 2018, and although I started caregiving for her at that time, it amplified
in 2020.

A day in my life consisted of waking up at 5:30am to get my workout done before
6:30am, which is when my mom would wake up. I would help her get dressed and on her
CompuTrainer (a stationary bike, the only exercise that she was still able to do). I would take the
time she was biking as my time to get ready for school, and then when I was done, it was around
7:30am. I would help my mom off her bike, and help her in the shower. I would dress her, and
then get breakfast ready for her. She would start work around 8:30am at her desk, and because it
was Covid, she worked remotely.

After making sure my mom was set for the day, I would drive my brothers and myself to
school. During school, I would continue to care by constantly thinking about my mom at home
by herself, and checking in to see if she was navigating the day okay. After school, I would come home and make
myself a snack, and do homework. At around 5pm, my moms work day was done. My brothers
and I would help her make dinner, feed her during dinner as well as eat our meals, and then my
brothers and I would clean up. Getting her ready for bed is similar to the morning routine, and
once she was in bed, I would have time to myself.

When my mother finally agreed to get help from a PSW, my routine changed, and I was
so grateful for the extra help. My morning was the same, as the PSW did not come to our house
until my mom was off her bike. The PSW would shower her and get her breakfast, which gave
me an extra hour of sleep! They would be home during the hours I was at school, which helped
relieve my mental stress. After school, the PSW would help my mom until dinner. In 2022, my
mothers health declined more severely, so the PSW stayed to help out after dinner, and with my
moms bedtime routine. The difference of a day in my life before and after having a PSW helping
out at home may not seem too different, but the smallest amount of aid helped me and my
brothers greatly.

Black History Month is a time to celebrate Black leadership in Canada. For Black clinicians and caregivers, this month is both a celebration and a moment of honesty. It’s a chance to acknowledge the realities that shape their work, their wellbeing, and their ability to care safely.

This month, we explore “Caring While Black” with two Black clinicians and caregivers. They generously share their experiences of providing care within systems that were not built with them in mind.

• Yinka Oladele, a Canadian counsellor, caregiver, entrepreneur, and community leader advancing culturally responsive palliative care, cancer support, and mental health equity.
• Donna Lawrence, RN, Nurse Educator, and long‑time advocate for anti‑Black racism work in nursing.

Their recent blog posts make one thing clear: “Caring While Black” isn’t a single story. It’s a systemic reality and it calls for collective responsibility.

The Emotional and Systemic Realities of Caring While Black

Through their lived experiences, Yinka Oladele and Donna Lawrence show the emotional and systemic barriers Black caregivers and clinicians face each day. They highlight the ongoing burden of advocating in culturally unsafe systems and the resilience it takes to keep caring with compassion and integrity.

These experiences are not isolated. The Canadian Medical Association has stated that anti‑Black racism has not left the health system¹. It continues to shape access, treatment, and workplace culture for Black patients and providers. Many Black clinicians describe the same daily tension of providing care and navigating harm.

On a day-to-day basis, much of this harm shows up through microaggressions that are subtle but damaging behaviours. Healthline² identifies them as:

• questioning a clinician’s competence
• commenting on appearance or hair
• assuming a caregiver is “aggressive” for advocating
• dismissing pain or concerns raised by Black patients

Individually, these moments may seem small. Collectively, they create chronic stress, emotional exhaustion, and barriers to equitable care.

These realities echo what the RNAO Black Nurses Task Force Report identifies as persistent patterns: disproportionate scrutiny, unsafe reporting structures, and limited opportunities for advancement³. The Task Force’s 19 recommendations call for system‑level change, including transparent reporting mechanisms, leadership accountability, equitable hiring and promotion practices, and organizational standards that explicitly address anti‑Black racism.

The RNAO’s methodological considerations reinforce this message⁴. Addressing anti‑Black racism requires intentional data collection, anti‑racism competencies in education, and processes that do not place the burden of proof on Black nurses. As Donna puts it, the question is not “Can you prove racism?” but “How do we demonstrate that racism is not present?”

Moving from reaction to intention, and from performance to accountability, is how we begin to build systems where Black clinicians and caregivers no longer shoulder additional, unjust burdens.

What Culturally Safe Palliative Care Must Look Like

A fresh perspective on “Caring While Black” asks us to imagine something different. It challenges us to build systems where Black clinicians and caregivers can thrive and not just survive.

This includes:

• Trauma‑informed, anti‑racist practice
• Representation in leadership and care teams
• Safe, confidential reporting mechanisms
• Training that integrates cultural, spiritual, and linguistic needs
• Partnerships with Black‑led community organizations
• Policies that embed equity, not just programs that gesture toward it

Culturally safe palliative care is a standard. It is strengthened by access to a high‑quality palliative care training program that equips clinicians and caregivers to provide equitable, culturally responsive support.

A palliative care training program also helps to embed the principles of compassionate community care into everyday practice. This ensures that care teams understand the cultural, social, and historical contexts shaping Black patients’ and caregivers’ experiences.

As the sector evolves, having a palliative care training program imbedded in true culturally safer care becomes essential. It prepares present and future clinicians to deliver care that is clinically excellent and culturally safe, grounded in equity.

From Legacy to Action: Building a Future Where Belonging Is the Norm

Black excellence in palliative care is everywhere. It shows up in quiet rooms, at bedsides, in community groups, and in advocacy networks. It lives in the hands of caregivers who show up every day with skill and compassion. Black people often model the very principles of compassionate community care long before systems catch up.

Honouring this excellence means more than recognition. It means action.

For organizations

• Implement anti‑Black racism frameworks
• Invest in culturally responsive training
• Create safe reporting systems
• Ensure equitable hiring, promotion, and workload distribution

For supporters

• Listen without defensiveness
• Believe lived experience
• Educate yourself using credible resources
• Speak up when you witness harm

For the sector

• Embed equity into policy
• Fund Black‑led initiatives
• Prioritize representation in leadership
• Treat cultural safety as essential to quality care

Closing: We Honour, We Witness, We Act

“Caring While Black” should never require resilience as a survival strategy. It should not demand silence, sacrifice, or self‑protection.

This Black History Month, we honour the legacy of Black caregivers and clinicians. Their impact lives not only in history books, but in the quiet, courageous work happening across Canada every day.

We honour.
We witness.
We act.

And together, we build a future where care is safe, equitable, and rooted in belonging for all.

Resources for Learning, Support, and Action

Anti‑Black Racism & Health Equity

• Black Nurses Leading Change (RNAO Interest Group)
• Black Health Alliance
• Health Canada: Social Determinants of Health
• Canadian Centre for Diversity and Inclusion (CCDI)
• Ontario Human Rights Commission – Anti‑Black Racism Framework

Palliative Care & Culturally Safe Practice

• Life and Death Matters-PACE for PSWs; Integrating a Palliative Approach: Essentials for Personal Support Workers
• Canadian Hospice Palliative Care Association (CHPCA)
• Pallium Canada – LEAP Courses
• Canadian Virtual Hospice – Indigenous & Cultural Safety Resources
• BC Centre for Palliative Care – Equity & Inclusion Initiatives

Black Caregiver & Community Support

• The Oladele Foundation
• African Cancer Support Group (ACSG)
• Therapy 4 Hope
• Canadian Cancer Society – Support for Racialized Communities

Education & Allyship

• CAMH – Addressing Anti‑Black Racism in Mental Health
• The Conversation Canada – Articles on Racism in Healthcare
• Government of Canada – Black History Month Resources

References

1 https://www.cma.ca/latest-stories/black-history-month-anti-black-racism-has-not-left-health-system

2 https://www.healthline.com/health/microaggression-examples-in-healthcare

3 https://rnao.ca/sites/default/files/2022-02/Black_Nurses_Task_Force_report_.pdf

4 https://rnao.ca/bpg/get-involved/strategies-to-address-anti-black-racism-in-nursing-methodological-considerations