Thursday 1 February 2024

Couples as Caregivers

February 14th is of course Valentine's Day and this year, I am planning a very special Caregiving Essentials webinar with... my husband! Jim and I have been married for 47 years and for most of those, we have been caregivers. As a couple, we've cared for our mothers, my step-father and of course our son Nicholas. I've been reflecting lately on what it takes to give care and maintain a loving, spousal relationship. There is no denying, it's a challenge.

There's something about caregiving that takes the "red" out of "hot" in the marital bed. Maybe it's the fact that we are constantly watching for the needs of another. Or perhaps we are just too tired. You can't drink from an empty cup and you cannot experience flickers of passion if you feel like a wet dishcloth.

What happens when the needs of that vulnerable charge never really diminish, they increase day by day?  We keep our caregiver eye firmly fixed on our loved one... we keep them safe.  So, what does it take to keep the romantic fires alight?  I would say that it requires a decision - a decision to look away from your care recipient for a few minutes and look at your partner.  It's difficult, especially when looking only at your loved one becomes a habit - a habit that eventually feels like necessary breathing.

And TIME is the enemy here.  Most caregivers have no respite, especially if their loved one is complex.  One couple I know who run a home hospital for their 42 year old son have not been out to dinner since 1997.  They cannot trust others to look after their precious son - his care would tax even a well-staffed, state of the art medical facility.

Some couples will have to muster lots of determination to make that decision to remain close.  Many will have to create complicated puzzles for respite plans, however brief.  But once the decision is made to have some physical contact with a partner, the decision is there - it becomes real.  Hands will be held, necks will be stroked, hugs have a chance of leading to something closer.

It takes courage to turn away from a fragile elder, medically complex child or ill spouse, even for a minute.  But a little planning to ensure the best safety measures possible for a break of fifteen minutes or a weekend away can make a caregiver and his or her partner into a couple.

Saturday 30 December 2023

Why 2024 Will Be the Year of the Caregiver

My New Year's resolution is to work hard at the Canadian Centre for Caregiving Excellence to get a national strategy for caregivers - ALL caregivers, patients and families. 

The third day of the November Canadian Caregiving Summit was all about how we can achieve real change here and worldwide for you, me and the millions of caregivers who need help now. We wanted to know what had been achieved in other countries and how they did it. 

First off, we heard from Allison Barkoff, acting Assistant Secretary for Aging and Principal Deputy Administrator, Administration for Community Living at U.S. Department of Health and Human Services. She declared that her mission was to ensure every person can live and participate in their community, regardless of age or ability. Not just people with Alzheimer's or childhood disability, EVERYONE. Caregivers included. Allison described a framework for thinking about care infrastructure: that supporting it is a matter of civil and human rights. And that care infrastructure consists of paid care AND families. We cannot support one without the other and expect positive change. A key aspect of the federal "wins" for caregivers that Allison described was in combining issues of aging with disability. Another key element was political will. An executive order by President Joe Biden created the opportunity for a big tent movement culminating in the RAISE Family Caregivers Act. "We must make the business case to support caregivers", Ms. Barkoff said, "and then we must act with radical incrementalism." In other words, be visionary, determined, collaborative, strategic and know that small steps on a single path can lead to new territory. 

Greg Link of the US Department for Community Living (Director, Caregiver Support) told us that the RAISE Act includes a list of nearly 350 actions that 15 federal agencies agreed to take. He urged us to adopt a similar big tent approach and then seek elected officials to enact a national strategy. He said, "have a policy that's big enough that any group that looks at it can think, "there's something here for us."" It's a whole society approach. 

Next, an international panel of caregiver leaders from the USA, UK, Ireland and Brazil compared and contrasted barriers and facilitators for engineering supportive change in their respective countries. One UK example has stayed with me: The Care Act states that caregivers are equal to patients and thus should have equal support from health and social systems. Dr. Nikki Dunne from Family Carers Ireland told us how her organization successfully lobbied to pay family caregivers

In keeping with the idea that care provider wellbeing is intertwined with family caregiver wellbeing, I was keen to listen to a panel on just that subject. A number of front line caregivers told us how they felt invisible and under-valued. Their stories of commitment to caring in the face of racism and apathy brought me to tears. 

But we need our elected officials to put skin in the game. We heard from Members of Parliament representing each of the major political parties in Canada. This isn't just talk - we need our tax dollars to support families because caregivers are in crisis. Thankfully, our message was well received. 

We heard about policy innovations in Canada and how we leveraged terrible pandemic lock-down challenges to achieve the broad acceptance of "essential family caregiver" in hospitals and long term care homes. 

Next, Dr. Brian Goldman interviewed Baroness Jill Pitkeathley, founder of Carers UK and "mother of the caregiving movement" worldwide. It was truly inspiring to hear the sum of her accomplishments over a lifetime of care advocacy. She challenged us, "You can do the same!" 

Finally, it was time to chat amongst ourselves and set policy priorities for caregiver support in Canada. The discussion was passionate and we could tell that change is coming. We ARE a movement and together, we are stronger. I will always remember the words of Allison Barkoff, "Big groups speak with louder voices." Well, it's time to be heard. I call for a National Caregiver Strategy in 2024 and I hope you'll raise your voice with mine.

Happy New Year, everyone!

Friday 22 December 2023

Isolated for the Holidays

I haven't forgotten to write up Day 3 of the Canadian Centre for Caregiving Excellence Conference - I WILL get to it (all my notes are made and I can't wait to tell you what happened!). But, it's coming up to Christmas and I want to share something that is holiday-related. 

A few days ago, I was browsing a facebook group for parents of children with disabilities. One mother asked for ideas on how to have fun at Christmas when extended family was unable to join and everyone felt blue that "nothing special" was going to happen over the holidays. Being homebound with loved ones who are mobility-challenged or too medically fragile to leave the house can be especially dispiriting at this time of year. But leave it to caregivers to share creative ideas about how to find the bright side and make happy family memories in spite of health challenges that necessitate being isolated at home over the holidays. Here are just some of great ideas I read with a few of my own thrown in for good measure.

  • Ask at your local shelter whether they do "doggy days out" - some let people borrow a pet for a few hours of unconditional love and playtime
  • Buy a Nerf gun and set up a targets (away from anything breakable) in the house and get ready to laugh
  • Choose a seasonal movie and menu to match for every day of the holidays
  • Christmas Bingo with "fabulous" prizes from the Dollar store
  • Christmas-themed charades
  • Build an epic fort and have hot chocolate in it
  • Play "Ghost Charades": the first round is the usual way of playing. The second round is using the same set of clues, but this time acted out under a bedsheet
  • Have a scavenger hunt in the house
  • Bring out old photos and tell stories about them (or make up stories)
  • Have a beach party and rent a hot tub
  • Have a singalong watch party of your favourite musical movie
  • Wrap dollar store gifts and try to guess what's inside without unwrapping it - the closest guess wins the present
  • Cook holiday food on Zoom or Facetime with family members - hanging out in the kitchen together can be fun
  • Add your idea HERE

Happy Holidays, everyone! And may 2024 bring caregivers recognition, appreciation and a National Caregiver Strategy! 

Tuesday 28 November 2023

The CCCE Summit Day 2 - Visit or Revisit the Highlights!

November 7th was Day 2 of the Canadian Caregiving Summit and it was just as exciting as Day 1! 

The theme of Day 2 was "Defining the need for a national caregiving strategy." The Canadian Centre for Caregiving Excellence told us that Canada (like many other countries) has reached a tipping point: many caregivers feel like they cannot go on, care providers are leaving the sector and people accessing care are struggling. The second day of the Summit focused on defining the need for a national caregiving strategy and its potential to transform the care economy for a brighter future of care. 

We kicked off the morning plenary with a panel of Indigenous caregivers and experts discussing "Caregiving in Indigenous Communities and Decolonizing Care." Via video recording, we learned about the challenges and successes in supporting caregivers across 25 very remote communities in Nunavut. With 84% of the population identifying as Indigenous, any help for families must be culturally sensitive and accessible, even if the vast majority of communities are fly-in only. Panel moderator Angela Bradley from Community Living Toronto introduced fellow panelists Amber Ward (a second-year medical student at UBC), Holly Prince (researcher in the field of indigenous palliative care at Lakehead U) and Grant Bruno (Cree PhD candidate at the U of Alberta). Hearing all the different perspectives on care and family in Indigenous communities reminded me that the relationship-based communities of our First Nations have much to teach us about interdependence. Grant Bruno introduced a concept that we all talked about throughout the conference: care gifting. He said, "gifting care allows us to survive. Care as a transaction is not healthy. We shouldn't expect something back when we give care. In my community, we understand that ceremony is necessary and with it comes suffering, but also love, like when you dance in the hot sun for hours. I give care all the time every day to my family and to my friends. But my cup is overflowing because of ceremony, relationships and strength-based stories." 

I had the pleasure of moderating the next panel, a subject very close to my heart: The Nexus Between Caregiving and Care Providing. Paul Knoll is a 51-year-old Ottawa-based artist with Down Syndrome. Paul lives with his sister, Helen Ries (co-founder of Siblings Canada) and Helen's husband Steffen. Paul described how his support workers honour privacy in the Knoll/Ries household and how family performs certain care acts that paid staff cannot. Why? Because Helen and Steffen know and love Paul best. 

Next, we heard from Ann-Marie Binetti, a manager at Community Living Toronto who also cares for her parents at home. Ann-Marie didn't downplay the challenges of managing so many paid and unpaid care responsibilities in her life, but she also observed that, "I'm a better manager at home and more compassionate at work because of my role with my parents." 

Then Dr. Afolasade Fakolade spoke about her research in the area of caregiver wellbeing at Queen's University. "Caregiving is not a pathology", she said, "we need to protect caregivers and care providers simultaneously. Both need training in the core competencies of their roles. Just asking, "How are you doing?" is not good enough!" Finally, Dr. Heather Aldersey also from Queen's University spoke about a study she is currently undertaking called "Beyond Services." That study seeks to investigate ways and means of enabling and supporting natural care - the unpaid support in families that is so often unrecognized and undervalued. Both paid and unpaid support are necessary but balancing those out is tricky and families want choice in that balance. 

The next panel "Care Provider Workforce: Meeting the Needs," moderated by Johnna Lowther from Caregivers Alberta first introduced Dr. Ito Peng, a care economy researcher from the University of Toronto who presented the "5 Rs of care work: Recognize, Reduce, Redistribute, Represent and Reward”. Dr. Barathi Sethi championed the idea of a caregiver-friendly workplace policy and emphasized how this would benefit the wellbeing of all, but especially racialized women working in the front lines of health care. Jhoey Dulaca of the Migrant Workers Alliance for Change talked about the need to create pathways to Canadian citizenship for immigrants working in health care. John Yip, CEO of SE Health, surveyed all the home care staff at his company and found that their wellbeing was suffering because they feel so under-appreciated and undervalued. He is taking innovative steps to address this malaise in his workforce. Union representative Tyler Downey tackled the issue of racism and systemic oppression in health care systems. He challenged health care leaders to stop depending on barriers to the career growth of foreign-trained workers because they constitute cheap, skilled labour on the front lines. 

The morning plenary sessions ended with a bang! In the panel, "How to Build a Federal Benefit from the Ground Up", we learned the story of two federal benefits that helped to lift Canadian caregivers and their families out of poverty. Al Etmanski shared his ten-year history developing the Registered Disability Savings Plan, using a relationship-based approach to crafting solutions even when government bureaucrats say it cannot be done. The story of unlikely champions in government working together with broad public support was inspiring for us all. Tyler Meredith told the story of creating the Canada Caregiver Credit from within the highest level of government where that idea originated. Finding the perfect partners at the perfect moment was a message I took away and, that change can happen with patience and perseverance! 

Breakout sessions in the afternoon were wide and varied. I couldn't attend all the sessions because many were concurrent, but I can say a bit about two. I moderated a session titled "Round the Clock: The Complexities of Complex Care." The mother of a medically complex young man, Marcy White, identified two of her greatest challenges: the lack of proper training in home care nurses and the disorganized and dangerous transition of youth from pediatric to adult health care systems. Susan Bisaillon, CEO of Safehaven (a respite and residential facility for complex care children and adults) spoke about the need to "act now and apologize later" to meet extraordinary needs of her clients. Researcher Lin Li told us about the evidence that validates the testimonies of other panelists and added that family priorities also include how to construct a meaningful life for complex youth after school ends and how to enhance autonomy and independence when disabilities make that a huge challenge. Alex Munter, CEO of the Children's Hospital of Eastern Ontario offered the vexing perspective of how the billing systems of provincial health care makes delivering complex care...complex. "To innovate, we come up against remarkable regulation. It's hard to serve complex patients when we have 80 accountability agreements with Ontario and each agreement relates to a different body part." Dr. Nathan Stall then introduced a perspective on complex care seniors. Together, we wondered whether the big tent approach of the CCCE movement could provide a template for innovation in getting better services for the miniscule percentage of the patient population and their families with the very highest needs. 

As the mother of a complex son, I was delighted to attend another panel on complex care titled "Missing from the Data: Working Parents Caring for Medically Complex Children." I identified with the dilemma expressed in that panel - that a lifetime of caring for a technologically dependent child meant loss of salary, pension and social opportunities. This lived experience is not documented in the literature. But it needs to be! 

My next blog post will provide a round-up of the last day of the CCCE Conference. I hope by reading these panel descriptions, you will be inspired to click this link to join the movement for caregiver change in Canada!

Monday 20 November 2023

The Canadian Caregiving Summit: Day 1 - All the Juicy Bits!

I had the pleasure and privilege of attending the Canadian Caregiving Summit from November 6-8 in Ottawa, Canada. I cannot begin to tell you how thrilling it was to join with so many national and international caregivers, researchers, front line workers and policymakers. Together, we kickstarted a movement for public policy change in Canada to support caregivers, both paid and unpaid. I know that I speak for everyone at the Summit when I say that we know change is coming! 

So, in a nutshell, here's what happened at the conference on Day 1: 

Host and caregiver Ron Beleno introduced Elder and Chancellor of the University of Ottawa, Claudette Commanda to give her blessing to us all. We felt a sense of history, love and belonging in her beautiful words. She talked about LOVE - a word that I believe belongs caregiving conversations!

Next, Dr. Naomi Azrieli, CEO and Chair of the Azrieli Family Foundation introduced the roots and context of the conference and the Canadian Centre for Caregiving Excellence. Both the centre and the summit are powered by the Azrieli Foundation and it was Naomi who originally posed the idea of a national caregiver support initiative to the foundation board two and half years ago. Dr. Azrieli spoke movingly about working together to improve care in a fractured and violent world - a world on fire. She said, "We are grieving. We are stressed. But our initiative and many others besides, give us solace and energy. This summit gives us an incredible sense of possibility." Naomi described the moment when the idea of a caregiver support initiative first was proposed. "We didn't know what this idea would look like but we knew that Canadian caregivers were in crisis", she said, "and we are still in crisis. And it is only by bringing many voices together that we can enact change." It was a thrilling spark to ignite the discussions that would follow. 

Liv Mendelsohn was the next speaker. Liv is the Executive Director of CCCE and she took a deeply personal approach in her remarks. She described the circles and cycles of care in her family beginning with her mother Lillian and "Bubby" Myra. When Liv's babies were born, Lillian cradled them to give Liv a much needed rest. Myra's hand guided the very young Liv safely across the street and when Myra was diagnosed with Alzheimer's Myra moved into Liv's family home. Then it was Liv's hand that guided Myra safely across the street. When Mom Lillian was diagnosed with terminal cancer, Liv became caregiver again until her beloved mother died. Today, caring for her father, Liv is looking to the future. She observed that her children will care for her, bringing care in Liv's family full circle. 

Then, Liv presented new data from a national survey of caregivers in Canada. This is what we learned: 

  • 90% of respondents need broader financial support
  • 2/3 of caregivers report financial hardship that is tied to caregiving duties
  • 94% need better access to home care services
  • only 25% feel well supported by government 
  • 64% of care providers say higher pay is needed for job satisfaction
  • 1/3 of care providers have thought about leaving the profession due to low wages and burnout or stress

Next, distinguished health journalist at the Globe and Mail and author, Andre Picard, gave a keynote titled Why Care Matters. He set the stage by observing that people are living longer than ever before and in an aging society, that reality is worth celebrating, not catastrophising. Picard's speech centred on the theme of respect: respect for women who make up the majority of caregivers and respect for patients and their health care and dependency needs. He remarked that the 53,000 deaths of seniors from Covid in Canada constituted a "massacre of neglect" based on ageism and ableism that is embedded in our health policies. Picard called for a transfer of funding from long term care to home and community care in order to end "the apartheid that is the reality of over 400,000 Canadians living in institutional settings when they would rather be at home with support." Andre Picard reminded everyone, especially the policymakers in the room, that policy change with teeth and funding is required if we truly want a future that includes respect for people with care needs and their families. 


Reciprocity in Care was the next panel, recorded by moderator Terrence Ho and siblings Amy and Holly Mathers. Born with a genetic disability causing severe kidney disease, Amy Mathers received a kidney transplant at a young age. The sisters bonded in adulthood over "survivor guilt" - Amy because a healthy child had died to save her life with a new kidney and Holly, because Amy was born with a genetic disease, not herself. They described the term "club sandwich caregiving" as opposed to simple "sandwich caregiving". It was a term that many conference-goers would use to describe their own situations with layered and multi-generational caregiving. 


There were many more exciting panels on November 6 and you can read about them HERE. 

Photo provided by CCCE and taken by Byfield-Pitman


For me, the highlight of the day and of my working life happened at the Gala that evening. I was awarded the Vickie Cammack Trailblazer AwardThe Vickie Cammack Trailblazer Award is awarded to a passionate individual who has demonstrated unwavering dedication to changing the landscape for caregivers and/or care providers in Canada. I was moved to tears because Vickie was my friend and my mentor. Her husband Al Etmanski, Canada's most brilliant social innovator in disability poverty reduction, gave a speech as did Vickie's daughter, Lena. Vickie died on December 27, 2022 from pancreatic cancer. She was a personal hero and close friend. You can read more about her remarkable contributions to caring families HERE

My next blog post will take you through the highlights of the Canadian Caregiving Summit, Day 2! 


Saturday 11 November 2023

Caring, Grieving and Remembering When the World's On Fire

Last week I had the privilege of attending the Canadian Centre of Excellence (CCCE) Summit. It was three days of continuously invigorating, challenging and hopeful discussions. I will write more in the coming days about the Summit and what I learned, but today I want to reflect on the meaning of care in times when part of the world is at war. Today is Remembrance Day and the news is full of unimaginable violence and brutality in the Middle East. The CCCE is powered by the Azrieli Foundation and Naomi Azrieli in her opening remarks at the Summit reflected on how we must persevere in caring even when "the world is on fire." This is a post that I wrote on Remembrance Day in 2019 and it seems especially appropriate today. 

 November is a sombre month. The leaves have fallen where I live, and the skies are steely gray. Rain changes to sleet and then back to rain again. Geese cry overhead.

On the streets, most people are wearing poppies. "Lest we forget" is a warning phrase we see in bus stations, on facebook and on veteran sponsored ads on television. I won't forget the sacrifices made by our soldiers, because my Dad was one who fought in Europe during WW11. He was one of the lucky ones - he came back.

My Dad was kind, gentle, quiet and very funny. My sister and I adored him. In 1973, he suffered the first of three strokes and for two years until his death, my Mom, my sister and I cared for him at home.

Recently, I have been thinking a lot about the meaning of care over years - how care changes and how it changes us. Maybe it's the melancholy of November or perhaps it's the messages I see in my news feed about Caregiver Month and Remembrance Day (or Veterans Day as it's called in the US).

Yesterday I listened to an extraordinary podcast interview with Dr. Arthur Kleinman, author of The Illness Narratives and his latest book, The Soul of Care: The Moral Education of a Husband and a Doctor. For ten years, Dr. Kleinman cared for his wife who had Alzheimer's. He also happens to be a medical anthropologist at Harvard. But here's what he said that reminded me of my own life of caring and of my Dad:

"The real issue about caregiving is that there's no Hollywood ending. So, how do we endure? This is the challenge. We are never sure that we can endure the unendurable. How do we keep going?

Image result for arthur kleinman wife

How many people come to a wall and feel that we can’t get over it but because of love, we get over it. Love and moral commitment. The last part is that care does not end with the death of the person - you care for memories after that. Building a story about one’s life and one’s family. And central to that is memory, memory of the care you gave and what went before… the time we spend developing those stories."

I do remember my Dad and in that way, I continue caring for him. And this month, I salute every other caregiver who is with someone who needs them, finding a way to scale a wall of despair and exhaustion because of love.

Wednesday 1 November 2023

Here's a Concept That May Explain a LOT

 A few months ago, I was chatting with the caregiving thought leader and founder of the Caregiving Years Training Academy, Denise Brown. Denise and I always have great conversations and this time, she mentioned an idea that really caught my attention. "You know why caregivers are so desperate?" she asked, "it's because they don't have their basic needs met." 

I've been thinking about this a lot. When I read about the real life trials and tribulations of overworked and overwrought caregivers, I ask myself, "which of their basic needs are not being met? Do they have enough rest? Do they have enough money to live without worry about food and shelter costs? Do they have time for reflection in order to process loss and grief? Do they have access to exercise and time outdoors?" The list goes on. Most often, I see that caregivers have multiple unmet needs. And these needs are BASIC, they are not frivolous. Basic needs are the minimum standard that humans need to survive, much less thrive. 

What if we had support programs that were designed to meet caregivers' basic needs? What would such a program look like? 

Next week, the Canadian Centre for Caregiving Excellence is holding its first ever Summit from November 6-8th in Ottawa.  Organizers will be seeking policy suggestions from the audience and I intend to suggest this one: that meeting caregivers' basic needs should be one framework for considering how to advocate for a national caregiver strategy. 

So, I would like to know from you: 1) Do you have your basic needs met? and 2) Do you have caregiver support policy ideas for the federal or provincial levels of government in Canada? 

Thank you for sharing!