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.

FREE Advance Care Planning (ACP) workbooks

April 16th is National Advance Care Planning Day in Canada

“If Not You, Who? Who would you trust to make your healthcare decisions? Planning for your future healthcare needs is important. So, we’re asking: Do you know what would happen if you couldn’t speak for yourself? Who would you trust to make those #healthcare decisions for you? 

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. 

• Think about who you would trust with making those important decisions for you. 

• Think about what matters most in your life and how that might help guide someone in making the kinds of healthcare decisions you would want.  

• The best time to think about this is now when you can speak for yourself. We have useful guides to help you along the way. 

Choosing a Substitute Decision-Maker (SDM)

Advance Care Planning policies can vary dependent on your province or territory. In order to ensure your end of life wishes are honoured it is crucial to have an understanding of your province or territory policies. This includes understanding what your #rights and #privileges are, as well as understanding the laws and regulations regarding end of life care, specific to your province or territory. While creating your advance care plan it is also important to make sure that you are using the correct documents for your province or territory. 

• Who do you trust most to make decisions for your health care that follow your wishes?

• Would that person be comfortable with making important decisions about your health quickly or in an emergency?

• Have you spoken to them about what matters most in your life? When someone knows what you value most in your life, they can make more informed decisions about your health care.

• What Matters Most? What does a good day look like for you?

• What situations do you find difficult?

• What gives you strength in difficult times?

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

• What do you value more: the possibility of a longer life, or the possibility of a better quality of life? 

These questions can help guide you and your substitute decision-maker and assist them to prioritize what matters most to you when weighing care options.

April 16th is Advance Care Planning Day. So, ask yourself: If not you, who?” 

Source: Advance Care Planning Canada 

There are multiple FREE Advance Care Planning (ACP) workbooks, toolkits and guides specifically created to follow the provincial/territorial requirements for your advance care plan. Visit for FREE FREE Advance Care Planning (ACP) resources across Canada https://www.advancecareplanning.ca/acp-across-canada/

April 16th is National Advance Care Planning Day in Canada.

It’s about conversations. It’s about wishes. It’s how we care for each other.

Advance Care Planning is about having conversations with family and friends, especially your Substitute Decision Maker – the person who will speak for you if you cannot speak for yourself in case of a health emergency. It may also include writing down your wishes, and talking with healthcare providers and financial or legal professionals.

Advance care planning is a process of reflection and communication, a time for you to reflect on your values and wishes, and to let others know your future health and personal care preferences in the event that you are unable to consent or refuse treatment or other care.

1. Think about what is most important to you – your values, wishes and beliefs.

2. Learn about your overall health. This may include current conditions you want to better understand.

3. Decide on your Substitute Decision Maker(s), one or more people who are willing and able to speak, for you if you cannot speak for yourself.

4. Talk about your values, beliefs and wishes with your Substitute Decision Maker(s), family, friends and health care providers.

5. Record your values, wishes and beliefs in your Advance Care Planning Guide, in a letter, poem, video or audio recording.

Source: Advance Care Planning Canada

ADDITIONAL RESOURCES:

For more information on advanced illness, advance care planning, palliative care, end-of-life care and grief, please visit: 

Canadian Virtual Hospice www.virtualhospice.ca 

Living My Culture www.livingmyculture.ca 

Advance Care Planning Canada values a free, accessible and open shared knowledge amongst the community. The website provides you with all the necessary tools to inform yourself on the most recent advanced care planning updates and developments. For more information and FREE resources, visit: https://www.advancecareplanning.ca/

The 100% Certainty Project: FREE Event

I am honoured to be a member of both The 100% Certainty Project and the Division of Palliative Care at McMaster University.

The 100% Certainty Project, in partnership with Epic Books, PX Dermody Funeral Homes and the Hamilton Public Library, advocates that issues of #death, #dying, #grief and #bereavement need to be “reclaimed” by the community - by private citizens who are accustomed to end-of-life care being provided by our #healthcare system.

The 100% Certainty Project is hosting a FREE MOVIE at The Westdale Theatre in #HamOnt on Monday, March 27th (6:45pm). JOIN US in the beautifully renovated historic Westdale Theatre as we view the film (based on the #1 New York Times bestseller A Man Called Ove, a previous 100% Certainty Project book selection). This celebration-of-life story is a major motion picture starring Tom Hanks!

“Meet Ove (a.k.a. Otto) - the kind of man who points at people he dislikes as if they were burglars caught outside his bedroom window. He has staunch principles, strict routines, and a short fuse. People call him “the bitter neighbor from hell.” But must Ove be bitter just because he doesn’t walk around with a smile plastered to his face all the time?

Behind the cranky exterior there is a story and a #sadness. So when one November morning a chatty young couple with two chatty young daughters move in next door and accidentally flatten Ove’s mailbox, it is the lead-in to a comical and heartwarming tale of unkempt cats, unexpected friendship, and the ancient art of backing up a U-Haul. All of which will change one cranky old man and a local residents’ association to their very foundations.

Fredrik Backman’s beloved first novel about the angry old man next door is a thoughtful exploration of the profound #impact one life has on countless others.” (source: Simon & Schuster)

REGISTRATION IS REQUIRED ON EVENTBRITE via https://www.eventbrite.ca/e/a-man-called-otto-free-screening-tickets-581260484757

Supporting children and youth who have a family member with an advanced serious illness

Supporting children and youth who have a family member with an advanced serious illness via NACG The Dougy Center & KinderCare

At some point, we all encounter a child or teen who is living with the anxiety of a family member’s life-limiting illness. You can have the opportunity to be a support person, providing empathy as they face the serious illness, grief, loss and perhaps death, of a family member.

Some considerations include: Listen, Acknowledge, Understand, Provide Consistency, Help, Safety, Provide Resources

Source: https://childrengrieve.org/12-resource/309-resources-2

A Conversation... About Advance Care Planning, Life, Love, Loss & Legacy

SO grateful to have this conversation about Advance Care Planning, Life, Love, Loss & Legacy with Laurel Gillespie at Advance Care Planning Canada with the Canadian Hospice Palliative Care Association.

Creating safe spaces for people to have informed conversations about wishes and values is so important. Exploring and honouring connections and meaning for any individual and family in the face of illness and loss can be invaluable.

Please join us for a discussion about these invaluable conversations, while also exploring ways to connect with healthcare providers, and most certainly, with those we love.

Consider who, and what, gives your life meaning? Not just at the end of life, but now. It’s never too soon, but it can be too late.

Click here to listen to this episode of “A Conversation With…”

Function in the Midst of Dysfunction: Supporting Families Facing Serious Illness

Almost all Canadians would benefit from palliative care. Only one in seven can actually access it at end-of-life

“The key to providing decent palliative care is a little bit of basic planning. Four conditions – cancer, cardiovascular disease, COPD (lung disease) and diabetes – account for 70 per cent of deaths.

Those chronic conditions all have fairly predictable courses of illness in the terminal phase. You don’t get diagnosed with lung cancer or heart failure one day and die the next. It’s a months-long process and providing pain relief (palliation) should be standard, and a priority.

Two in three people receive home care in their last year of life. But only one in seven receive palliative care in the home.

That’s the failure point – and that’s what we need to fix.

There needs to be a commitment – philosophical and financial – to bringing palliative care to patients when they need it and where they want it.

Not everyone can (or should) be cared for at home in their final days. It’s back-breaking, emotionally-draining work for loved ones. Yet many would do so willingly and lovingly.

But they run up against a gross number of barriers, ranging from difficultly getting home visits from physicians (who are poorly remunerated for that work in many provinces), lack of nursing support (because of caps on home care hours), and absurd rules that mean drugs taken at home are not covered by medicare.

All the problems raised by the CIHI report are easily resolved. For example, having paramedics provide palliative care can eliminate transfers to hospitals. Sending doctors and nurses to homes or nursing homes can free up hospital beds – and save money in the process. Not to mention that, at the very least, people deserve a modicum of dignity in their dying days.

The whole point of palliative care is to improve quality of life. We shouldn’t let bureaucratic and structural inadequacies undermine that necessary and noble work.“ by the brilliant André Picard via The Globe and Mail

Support for individuals and families across Canada facing Pancreatic Cancer

Am honoured to be part of this brilliant new initiative offering free support to anyone facing Pancreatic Cancer across Canada. This initiative is a collaboration between Pancreatic Cancer Canada Foundation and Wellspring Cancer Support Network

For more information, or to access support, please visit: https://wellspring.ca/online-resources/pancreatic-cancer-peer-support/  

Practising compassion in an uncompassionate health system. Hearts in Healthcare

"Yet, amidst the storm, some remarkable health professionals create a circle of calm. They go about their work in an unhurried way, finding time to greet their patients, put them at ease, listening deeply and offering kindness and compassion. They don’t neglect their clinical tasks, indeed they seem to get the work done with quiet efficiency. These inspiring workers go home with satisfaction and joy in their hearts. How is that possible?"

Source: Hearts in Healthcare Practising compassion in an uncompassionate health system 

Who Will Care for the Caregivers?

"If it’s a certainty that all of us will experience illness, it’s a near-certainty that most of us will care for someone with an illness. But our current conception of patient and disease seems too narrow. It may help to recognize that while patients’ needs come first, illness is often a family affair.

For many, caring for a loved one provides tremendous purpose and fulfillment. It can deepen relationships and offer the time and space for connection where it otherwise might not exist. It seems that the goal, then, should not be to reduce family caregiving, but to reduce its burdens".

The role of #Social #Workers in #Palliative, #end of life and #bereavement care. #hpm

"Social work is essential to palliative, end of life and bereavement care. Some social workers deliver specialist palliative care social work; many others encounter people who are close to or at the end of their life, or are becoming or are bereaved. Social workers have a great deal to offer". 

#Canadian Virtual #Hospice. Information and #Support on #Palliative and #End-of-Life #Care, #Loss and #Grief. @VirtualHospice

"The Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators."

Observing the Wish to #Die at #Home. #hpm

“We often hear from family members that they find great value in our Guide for Family Caregivers, detailed information on how to handle such common end-of-life symptoms as breathing problems, pain, changes in behavior and sleeplessness. The piece details several signs that may signal a loved one is transitioning from life to death, such as no appetite or urine output, and changes in breathing sounds and patterns.

We encourage people to be a calm presence, to hold the loved ones hand, to call in others who wish to be present, as well as call Hospice for support. Hearing is the final sense to go, so we encourage family members to continue speaking to their loved one, reassuring that everything is all right.

‘What we are trying to do is normalize what they are going through,’ says Joel. Death, after all, is not an aberration but a universal end we all one day meet. ‘We want the family members to know what the very end of life looks like and what they can do when the time comes. What can they do? Literally, just hold your loved one’s hand’.”

#Memories of a #Caregiver - Honoring Voices: Walking Alongside The #Caregiver. #hpm

In Part 2 of our "Honored Voices" series, we listen to bereaved caregivers and support professionals and what can be learned from their experience. This video is designed for those who are currently supporting caregivers or those who have experienced the loss of a loved one.

National #Family #Caregiver Day.

"On the first Tuesday of April, Canadians come together to recognize family members, friends, neighbours and other significant people who take on a caring role to support someone with a diminishing physical ability, a debilitating cognitive condition or a chronic life-limiting illness.  Known as National Family Caregiver Day or National Carer Day, this special day encourages all Canadians to pay tribute and recognize the valuable contribution of family caregivers to our lives and our society as a whole."#Family

Compassionate Care Benefits. #Caregiver #Support #hpm

"Compassionate care benefits provide temporary income support to eligible individuals who must be away from work to provide care for a gravely ill family member at risk of death.

Effective January 3, 2016, the enhanced benefit, announced in 2015, allows claimants to collect up to 26 weeks of benefits, up from the current 6 weeks. Further, the period during which benefits can be taken is expanded to 52 weeks (up from 26 weeks). Benefits can be shared between family members.

Eligibility for compassionate care benefits remains the same, including the requirement for a medical certificate signed by a doctor attesting to the family member’s condition".

What Luck Means Now

"The day we learned the news, just 15 months had passed since our wedding on a New Hampshire hillside with friends and children gathered, fireworks exploding and a band backing us up as we performed a duet on a John Prine song and talked about the trips we would take, the olive trees we would plant. Each of us had been divorced almost 25 years. How lucky, everyone said, that we had found each other when we did.

Now, luck means having this operation. In four hours, luck will mean getting a call from a nurse who says: 'They’ve reached the tumor. They’re going in for it'."

When Your Loved One Is Ready for #Hospice Care - and You Aren't. #HPM

“And I had a lot of questions about hospice care, including whether I could stop it if I changed my mind later. (He told me I could stop it at any time, for any reason, and that if I changed my mind again I could resume the services.) The conversation was incredibly stressful. At one point I realized I was holding my breath.

After answering all my questions, Doug looked at me kindly and said, ‘You know, Marie, the real question for the caregiver is how to help the patient have the highest possible quality of life in the time that is remaining.’

That completely changed my thinking about the situation. It gave me a new and positive goal - to bring Ed as much happiness as possible. It led me to think about all the special things I could do for Ed -- visiting him more often, taking my little Shih Tzu to see him, having that violinist come back and play another concert, reading to him from the newspaper, and buying him even more of the stuffed animals he loved so much.”

Helping #Children #Cope with #ALS

"When a family member has been diagnosed with Amyotrophic Lateral Sclerosis (ALS) children have many questions and concerns about the person they know and love. We offer these guidelines as a tool to assist your family when talking or sharing information and personal feelings about ALS. You may also want to share this information with other important adults involved in your children’s lives such as teachers and coaches".