Navigating the Impact of Complex Illness as a Caregiver

I was honoured to present "Navigating the Impact of Complex Illness as a Caregiver" during National Hospice Palliative Care Week to VON Canada Grey Bruce, Supportive Care Program and an incredible group of Caregivers and Care Providers.

Following the diagnosis of a complex illness, it is common for family to feel a range of emotions including sadness, anxiety, anger and hopelessness. Facing these challenges can sometimes bring people together, while often, it can feel like it pulls people apart. Caregiving requires balancing multiple roles and stressors, while also navigating grief and uncertainty.

Caregiving can feel isolating and often means losses of identity, ritual and connections. Navigating the changes and uncertainty as a caregiver is part of the added demands of an illness experience.

Harris (2016) states, "Grief is a response to disorganization that occurs after an assumption about the world is challenged by a significant loss. Conflict occurs between assumptions & situations that challenge those assumptions. Grieving is the process of how the new assumptive world is (re)formed over time"

Yet, amid all the challenges and changes, grief is carried and often unaddressed. Most assume it happens only once someone is dying or has died. So much non-death loss and grief occurs throughout our lifetime, especially following the diagnosis of a complex illness, throughout the illness experience, at time of death, and for the balance of our lives as we (re)form the world around us.

Caring in Canada (May 2024) via Canadian Centre for Caregiving Excellence provides results from the National Caregiving Survey of 3,000 Caregivers and Care Providers highlighting:
- Caregiving takes a toll on a caregiver’s wellbeing
- Caregivers are working ‘extra-shifts’
- Caregivers 65+ also need care
- Caregiving has a financial toll
- Care provider shortage is linked to poor working conditions
- Diverse communities face barriers and gaps in support

Integrated and accessible support is needed for caregivers throughout the illness experience.

*Family is best defined by the person receiving care. It can include family of origin, or chosen family.

The first week of May is National Hospice Palliative Care Week in Canada

National Hospice Palliative Care Week is an opportunity to highlight quality Palliative Care across the country. This week also serves as an opportunity to call for better education and access to Palliative Care for ALL across Canada.

Palliative care is active, collaborative, compassionate and integrated person and family-centred care, for anyone, of any age, facing ANY stage of complex illness.

“Canadians should have access to affordable, culturally safe, high-quality palliative care regardless of where they live and in what setting they choose to receive care. Promoting and supporting the need for improved development and delivery of early, active, competent and compassionate palliative care is essential. This includes expert pain management; skilled psychosocial, emotional and spiritual support; and comfortable living conditions with the appropriate level of care – whether at home, in a hospital, at hospice residences or in any other settings of choice.” Source CCS

To access 10 Myths about Palliative Care, visit Canadian Virtual Hospice

For more information about Palliative Care in Canada, please visit:
The Canadian Hospice Palliative Care Association
Canadian Virtual Hospice
The Canadian Cancer Society

April 16th is Advance Care Planning Day in Canada

Planning for future healthcare needs is important.

• Who would you trust to make healthcare decisions?

• Do you know what would happen if you couldn’t communicate for yourself?

• Who would you trust to make those healthcare decisions on your behalf? 

Think about: 

• Who you would trust with making important decisions for you. 

• What matters most in your life and how that might help guide healthcare decisions you would want.  

Consider: 

• Do you know what would happen if you couldn’t decide for yourself?

• Who do you trust to make healthcare decisions that respect your wishes?

• Would that person (or people) be able to make important decisions about your health in an emergency?

• Have you spoken to anyone about what matters most in your life?

• What gives you strength in difficult times? 

• Are spiritual, cultural or religious beliefs, practices, or ceremonies are important to you?

The best time to think about this is NOW (in advance of a medical crisis), while you can make decisions and communicate for yourself. You have the power to choose who that person is. They can be a family member, a friend, or anyone in your life that you trust to make the kinds of healthcare decisions you would want. 

Ask yourself: If not you, who? 

Source: Advance Care Planning Canada

It is never too early, but it can be too late!

To learn more about Advance Care Planning in 5 Steps, visit Advance Care Planning Canada to access helpful free toolkits and guides to help you along the way. 

FREE Death Café at the David Braley Health Sciences Centre, McMaster University

In celebration of Advance Care Planning Day 2024, I am honoured to co-facilitate a FREE Death Café at the David Braley Health Sciences Centre, together with Dr. Alan Taniguchi, McMaster University on behalf of The 100% Certainty Project. Death: Something to Talk About.

Registration is required for this FREE Death Café on Wednesday March 27th (6-8pm) via Eventbrite

Death Café is an international movement where people, often strangers, gather to eat, drink tea and discuss death. The objective is 'to increase awareness of death with a view to helping people make the most of their (finite) lives’.

At Death Café, you can expect a group directed discussion of death with no agenda, objectives or themes. It is a discussion group. Please note that Death Café is NOT a grief support group, nor is this a grief counselling session.

Death Café is a respectful, public event where people of all communities and belief systems are welcome to have respectful discussions about death.

Interesting conversation is guaranteed! For more information, please visit Death Café

Exploring Grief and Moving Forward After a Pancreatic Cancer Diagnosis

I am honoured to deliver the national webinar, “Exploring Grief and Moving Forward After a Pancreatic Cancer Diagnosis” for Wellspring as they partner with Pancreatic Cancer Canada in support of Pancreatic Cancer Awareness Month.

Pancreatic Cancer is often found in later stages because it has relatively few symptoms and is statistically one of the worst cancers for treatment and survival. Anticipatory grief is one of the many unique challenges encountered following a Pancreatic Cancer diagnosis as 70% of people diagnosed with pancreatic cancer do not survive past the first year, which means a Pancreatic Cancer diagnosis can be traumatic for patients and families.

In this webinar we will define Anticipatory Grief and explore some universal sources of grief, while demystifying and acknowledging different types of loss, and consider how we uniquely metabolize grief. Lastly, we will highlight some resources for support and explore considerations for self-care.

It is National Grief and Bereavement Day in Canada

The third Tuesday in November marks National Grief and Bereavement Day in Canada. Especially on this day, the Canadian Hospice Palliative Care Association (CHPCA) encourages Canadians to engage all sectors of society in dialogues to raise #awareness, identify and #support access to a range of necessary resources for anyone facing loss, grief and bereavement.

Reach Out, Support the Grief Journey. When someone we know is faced with grief, we can often find ourselves at a loss for words. We may be unsure of how to support friends, family, or colleagues going through a difficult journey. But here’s the truth: You have the power to make sure they are not facing grief alone. Our actions can provide solace and connection when needed most.

National Grief and Bereavement Day calls upon all of us to reach out and move alongside those around us on a grief journey. It’s a day to take action, to be present for someone who needs support, even when words fail. For those who may feel uncomfortable with grief, who never quite know what to say, or are uncertain about what to do to help, there are things you can do, big or small, that can make a world of difference for someone in your life who is grieving.

Reaching out with simple gestures of kindness can make a profound #impact. Small but thoughtful actions can bridge the gap between isolation and healing. Even when it feels as though there’s nothing you can say, your actions speak volumes to people in your life navigating grief and loss. 

Together, let’s break the silence surrounding grief. Let’s move alongside those around us on a journey with grief. Join us on National Grief and Bereavement Day as we collectively learn to reach out, offering genuine support and compassion to those around us.

Source: CHPCA

Children's Grief Awareness Day (CGAD).

CGAD seeks to raise awareness of the painful impact that the death of a loved one has in the life of a child or teen, and provides an opportunity to make sure that these children and #teens receive the support they need. In just one year, over 203,000 of Canada’s 7.5 million youth under 18 will experience the death of someone in their extended family. 

1 out of every 14 children and teens will experience the death of a #parent, #caregiver or #sibling who lives in their home. These youth experience the ripple effect of multiple losses…

The death of a parent, caregiver or sibling has been found to be one of the most stressful life events that a child or youth can experience. Therefore it is important to provide children with information about grief, normalize their responses and encourage them to share their thoughts and feelings.

Children are often the hidden mourners in our society with little attention being paid to their bereavement needs. Every child has different needs, perspectives and understandings of what death means. Therefore it is important to provide children with information and education on death and grief as well as normalize their responses and encourage them to share their thoughts and feelings.

It is challenging to parent a grieving child when parents are themselves grieving. Grief is often isolating and consuming. Having access to resources and supports can help families feel connected and equipped to face their grief together.

Visit The Canadian Alliance for Children's Grief (CACG) for more information or resources. CACG is the first Canadian national group of professionals working together to ensure the accessibility of bereavement support and information to grieving children, teens and their families. Resulting from a collaborative effort amongst agencies and service providers across the country, the CACG seeks to address the barriers experienced by organizations providing services to grieving children and youth and strengthen the support offered to local communities. Source: CACG

Día de Los Muertos: A Time to Grieve & Remember

Day of the Dead is a rare holiday for celebrating death and life. It is unlike any holiday where mourning is exchanged for celebration. Day of the Dead is a holiday to remember loved ones by sharing a meal with them as one would when they were alive.

Calaveras (Skulls) are ubiquitous during Day of the Dead. The skulls are often drawn with a smile as to laugh at death itself. They take many forms such as sugar candies, clay decorations, and most memorable: face painting. Sugar skulls are decorated and placed on ofrendas (altars) of loved ones. Marigolds are believed to be the pathways that guide the spirits to their ofrendas and they symbolize the beauty and fragility of life.

Dia de los Angelitos (Day of the little angels) starts the holiday at midnight on Nov 1st, where the spirits of all deceased children are believed to be reunited with their families for 24 hours. Families construct an altar, known as an ofrenda, with the departed child’s favorite snacks, candies, toys, and photographs to encourage a visit from their departed children. The names of the departed children will often be written on a sugar skull.

At midnight of the following day (November 2nd), the celebrations shift to honor the lives of the departed adults. The night is filled with laughter and fun memories, much like the night before. However, the Ofrendas take on a more adult-like theme with tequila, pan de muerto, mezcal, pulque and jars of Atole. Families will also play games together, reminisce about their loved ones, and dance while the village band plays in their town

The next day is the grand finale and public celebration of Dia de Muertos. In more recent times, people come together in their cities, dressed up with Calavera painted faces (Skeletons) and have parades in the streets. Cemetery visits are also common on the last day as families will go to decorate the grave sites with Marigold flowers, gifts, and sugar skulls with the departed’s name on them. It’s customary to clean the grave stone and restore the color.

Source: https://dayofthedead.holiday/

Today is World Hospice and Palliative Care Day (#WHPCDay23)

Today is World Hospice and Palliative Care Day (#WHPCDay23).

World Hospice and Palliative Care Day is an annual unified day of action to celebrate and support hospice and palliative care around the world.

WHPCD has been marked every year on Saturday October 14th to advocate for better hospice and palliative care services around the world. The WHPCD theme for 2023 is Compassionate Communities.

Together for Palliative Care Compassionate Communities care for people, assist people to live in the place they call home, connect people to services, and raise #awareness about end-of-life issues.

We believe that palliative care working alongside compassionate communities multiplies the ability to respond to the needs of the most #vulnerable in our communities.

For more information, please visit The Worldwide Hospice Palliative Care Alliance (WHPCA)

Today is National Children’s Hospice Palliative Care Day in Canada

October 12th, 2023 marks National Children’s Hospice Palliative Care Day in Canada. The campaign aims to raise awareness about the importance of pediatric hospice palliative care and improve the quality of living and dying for infants, children and youth with life-threatening conditions and their families. National Children’s Hospice Palliative Care Day is held on the second Thursday of October annually.

In the delicate tapestry of a child’s life, every thread counts. National Children’s Hospice Palliative Care Day celebrates the art of “Weaving the Fabric of Care,” applauding the dedication, compassion, and advocacy of those caring for children with serious illnesses.

This day is a call to action, a chance to embrace the essential threads of care that comfort and support families navigating a child’s serious illness when they need it most. It’s about recognizing that children’s hospice palliative care is not just a specialty; it’s a shared responsibility across healthcare and communities.

We invite you to join this heartfelt movement. It’s a journey of awareness, empowerment, and care. Together, we can make a difference in the lives of youth and their loved ones through a holistic and family-centered approach to care.

Become an advocate – for each child, for every family. Discover the world of children’s hospice palliative care and equip yourself with the knowledge to identify those who would benefit most from its supportive embrace. You can be the voice that echoes through the corridors of healthcare, championing this approach to care, and the professionals of all stripes that provide it.

“Weaving the Fabric of Care” is not just a slogan; it’s a promise. A promise that anyone can integrate a palliative approach into every facet of their care. A promise that we can improve the quality of life of a seriously ill child and their family together through this approach, whether you are a nurse, allied health professional, social worker, or even a volunteer.

Let us unite our hearts, weave our stories, and together, create a quilt of care that enfolds every child in warmth, comfort, and dignity. Join us on this journey, as we weave the fabric of care, one thread at a time.

Source: The Canadian Hospice Palliative Care Association
For more information, please visit The Canadian Network Of Palliative Care For Children

Palliative Care In-Depth Online Workshop

As faculty at McMaster University and a certified LEAP™ facilitator, I am again honoured to join my colleagues from the Division of Palliative Care at McMaster University to facilitate the Palliative Care In-Depth Online Workshop combining the curriculum of Pallium Canada’s LEAP™ In-Depth with McMaster University 3 Days in Palliative Care.

This is a unique opportunity for healthcare professionals to continue learning about the palliative care approach and focus on different disease conditions and topics. The session schedule is designed to allow for national participation and clinical commitments.

This workshop has been developed for online delivery in partnership between Pallium and the Department of Family Medicine at McMaster University. Sessions are facilitated by McMaster University faculty who are LEAP™ certified facilitators and experienced palliative care clinicians and educators.

TOPICS COVERED INCLUDE:
• Recap of the palliative care approach
• Unique situations
• Transitions in long-term care
• Heart diseases and advanced liver
• In-depth communication
• Renal and neurological diseases

Please contact support@pallium.ca with any questions about the course, or to register.
Want to learn more about Pallium Canada or LEAP™? Visit pallium.ca

Demystifying Grief and Honouring Loss: Exploring Healing While Caring for Others and Ourselves

I am incredibly honoured to deliver Virtual Palliative Care Grand Rounds, “Demystifying Grief and Honouring Loss: Exploring Healing While Caring for Others and Ourselves” at University Hospitals, Case Western Reserve University School of Medicine.

In healthcare we move through an array of experiences, navigating acute emergencies, illness, death and a myriad of non-death losses, for ourselves, for all we love, and all we serve.

What about experiences that cannot be cured or fixed? As Dr. Kenneth Doka states, “Grief is a reaction to loss. We often confuse it as a reaction to death. It’s really just a very natural reaction to loss. When we lose any significant form of attachment, it’s the process of adjusting”.

There is no closure or “getting over” loss, nor are there finite timelines in grief.

We continue to grieve someone (or something) after loss and the cumulative effects and secondary losses that follow. Grieving the loss means learning to move forward, integrate, and metabolize the loss(es), while honouring the connection in meaningful and supportive ways.

In the face of trauma, loss and uncertainty, it can feel overwhelming to consider moving forward. Tedeschi & Calhoun highlight the importance (and benefit) of Post-Traumatic Growth, specifically:

• Traumatic events are not viewed as desirable

• Stories of others moving through trauma are always important in post-traumatic growth

• Strength is often correlated almost paradoxically, following an increased sense of being vulnerable

In Kitchen Table Wisdom, Dr. Rachel Naomi Remen writes, “The expectation that we can be immersed in suffering and loss daily and not be touched by it is as unrealistic as expecting to be able to walk through water without getting wet.”

There is healing power in connecting with the voices and stories of others. I am grateful to share a space to honour healing in healthcare, in the face of grief, loss, connection and community.

Rights of a Student Who is Grieving

Returning to school can be a time of tremendous grief bursts - both expected and unexpected: from completing emergency contact forms after a parent/caregiver has died (is dying) or absent in any capacity; seeing families together when a parent or sibling is in hospital, hospice or is no longer present; witnessing the range of emotions when people talk about summer experiences filled with joy and connection when grief, loss, an accident, illness and absence has been their experience instead… While not readily visible, grief will continue to influence the life of a student impacted by loss (as they live with navigating the ongoing impact of grief & grieving).

Compassion, creativity, patience and empathy are essential in responding in a non-judgmental way to the individual and unique needs of each student.

You can access the FREE Rights of a Student Who is Grieving via NACG

About Childhood Grief FREE Resource

About Childhood Grief

“The death of a family member, friend or other significant person is a lifelong loss for children. It is normal for children to miss the person who died and to experience grief that might come and go with different levels of intensity for some time after the death. It can be challenging to parents and caregivers to know what to do for, what to say to and how to help children who are obviously hurting. Here are a few suggestions about how to be helpful to a grieving child based on research and practice among children’s grief support professionals and volunteers. It is important to note that grief reactions in children are varied, wide ranging and unique to each individual.” 

The following suggestions will help guide you as you seek to be provide understanding and compassion to children living with grief:

• Grief is a normal reaction for children to the death of someone significant

• Children need to know the truth. Most parents and caregivers would agree that they would prefer that their children not have to deal with the difficult truths that might accompany a death

• Each child’s grief is as unique to him or her as was their relationship with the deceased

• Grieving children often feel alone and misunderstood

• Children will experience grief over the death of significant people at different times throughout their lives

• Grieving children often experience personal growth as a result of their loss

• Grieving children feel less alone when they are with other children who have experienced the death of a significant person and when they have loving, consistent adults in their lives

• Knowledge is Power

Source “About Childhood Grief” via NACG

FREE Individual Student Bereavement Plan

Returning to school can be a time of tremendous grief bursts - both expected and unexpected: from completing emergency contact forms after a parent/caregiver has died (is dying) or absent in any capacity; seeing families together when a parent or sibling is in hospital, hospice or is no longer present; witnessing the range of emotions when people talk about summer experiences filled with joy and connection when grief, loss, an accident, illness and absence has been their experience instead… While not readily visible, grief will continue to influence the life of a student impacted by loss (as they live with navigating the ongoing impact of grief & grieving).

You can access the FREE Individual Student Bereavement Plan via NACG

“This document is a resource for supporting students returning to school after they have experienced the death of a significant person in their lives. When a student returns to school, they may feel alone and challenged by the task of engaging with their daily routine. Schools are in a unique position to provide support for students with thoughtful plans specific to the individual’s needs. Students grieve developmentally, and their needs are unique and changing throughout the days, months, and years ahead. Those students that need and receive grief support have improved outcomes socially, emotionally, and academically.” Source “Individual Student Bereavement Plan”

Source: NACG

Teaching about the importance of empathy

To learn more about how Dr. Barbara Tatham used her own illness to teach others about the importance of empathy, please read "White Coat to Blue Gown".

"She laid herself bare for everyone to see just how hard it can be to be a patient, and in doing so, made all of us want to do better.... Barb’s honesty about her poor prognosis was painful to hear but she had clearly confronted her own humanity and mortality in a way that few of us ever will.” Source: e-Dialogue College of Physicians and Surgeons of Ontario

Undergraduate Medical Education: From White Coat to Blue Gown

I was incredibly honoured to once again facilitate this annual lecture in memory of Dr. Barbara Tatham at the Michael G. DeGroote School of Medicine at McMaster University.

Barbara was a medical student at McMaster University and went on to become an innovative Family and Emergency Room Physician and collaborative Medical Educator. After enduring a courageous battle with cancer, at the age of 32, Barbara died on October 16, 2019, a few short weeks after delivering her final extraordinary undergraduate medical education lecture, Barbara left us with her last lecture, a precious legacy, recorded at McMaster, selflessly demonstrating her indomitable spirit and compassion.

We have been fortunate to maintain contact with Barbara’s family since 2019. Their hope is that medical students while remembering Barbara’s empathy, will consider their own humanity as they go on to care for patients, families and themselves.

FREE Death Café at McMaster University: August 9th (6-8pm)

I am honoured to facilitate a FREE Death Café on Wednesday August 9th (6-8pm) at the David Braley Health Sciences Centre, McMaster University on behalf of The 100% Certainty Project. Death: Something to Talk About.

Registration is required for this FREE Death Café via Eventbrite at: https://www.eventbrite.ca/e/death-cafe-tickets-668976405437

Please note: Death Café is an international movement where people, often strangers, gather to eat, drink tea and discuss death. The objective is 'to increase awareness of death with a view to helping people make the most of their (finite) lives’.

At Death Café, you can expect a group directed discussion of death with no agenda, objectives or themes. It is a discussion group. Please note that Death Café is NOT a grief support group, nor is this a grief counselling session.

Death Café is a respectful, public event where people of all communities and belief systems are welcome to have discussions about death. Interesting conversation is guaranteed! For more information, please visit Death Café https://deathcafe.com/

FREE Death Café on Wednesday June 28th at McMaster University

I am honoured to facilitate this FREE Death Café on Wednesday June 28th (6-8pm) at the David Braley Health Sciences Centre, McMaster University on behalf of The 100% Certainty Project. Death: Something to Talk About.

We will highlight the articles, “You May Want to Marry My Husband” (written by Amy Krouse Rosenthal, 2017) and “My Wife Said You May Want to Marry Me” (written by Jason B. Rosenthal, 2018), alongside the 2018 TED Talk “The journey through loss and Grief” and 2020 book, “My Wife Said You May Want to Marry Me” by Jason, (named one of time’s best new books). 

This event is featuring “My Wife Said You May Want to Marry Me”, an extraordinary 2023 book selection for The 100% Certainty Project. Death: Something to Talk About. The book “is an inspiring memoir of life, love, loss, and new beginnings by the widower of bestselling children’s author and filmmaker Amy Krouse Rosenthal, whose last of act of love before her death was setting the stage for her husband’s life without her in a column in the New York Times.” Source: https://www.jasonbrosenthal.com/books 

Registration is required for this FREE Death Café on Wednesday June 28th (6-8pm) via Eventbrite at: https://www.eventbrite.ca/e/death-cafe-tickets-657227203257?utm_source=eventbrite&utm_medium=email&utm_content=follow_notification&utm_campaign=following_published_event&utm_term=Death+Cafe&aff=ebemoffollowpublishemail 

Please note: Death Café is an international movement where people, often strangers, gather to eat, drink tea and discuss death. The objective is 'to increase awareness of death with a view to helping people make the most of their (finite) lives’.

At Death Café, you can expect a group directed discussion of death with no agenda, objectives or themes. It is a discussion group. Please note that Death Café is NOT a grief support group, nor is this a grief counselling session. 

Death Café is a respectful, public event where people of all communities and belief systems are welcome to have discussions about death. Interesting conversation is guaranteed! For more information, please visit Death Café. https://deathcafe.com/

It is National Hospice Palliative Care Week in Canada

The first full week of May marks National Hospice Palliative Care Week in Canada. Palliative care is person-centered care. That means, in part, that wherever there is a person with a life-limiting illness, palliative care can be provided. If someone is facing significant health-related suffering because of a life-limiting illness, palliative care can help regardless of the setting of care, regardless of a person’s illness or prognosis, regardless of their postal code. Palliative care is an approach that aims to alleviate the suffering of people facing a life-limiting illness. It can be provided in any setting – from hospice, to long-term care, to hospital, to home.

While access to palliative care has improved over recent years, the latest data shows that only 58% of Canadians who died in 2021-2022 received palliative care, usually in a hospital. The “Palliative Care Everywhere” campaign highlights that there are no limits on where a palliative approach to care can be provided and reminds us that wherever people face life-limiting illnesses, end-of-life, and grief, there must also be a place for palliative care.

"This week, we celebrate the indispensable and compassionate care provided by health care workers, volunteers, unpaid caregivers and many others across Canada. The impact of palliative care on a person’s quality of life and on their family is profoundly meaningful, and every person with a life-limiting illness deserves to receive this level of care," said Laurel Gillespie, CEO of CHPCA. “Sadly, less than 60% of Canadians who died last year received care from the discipline that specializes, in part, in caring for the dying. It is time for everyone in Canada to come together to build a future where ‘Palliative Care Everywhere’ is true in every postal code.” Source: CHPCA