Thursday 27 June 2024

New Resources for Working Caregivers and Their Employers!

Did you know that more than 3.5 million workers in Canada are also family caregivers? And over half of those are women who provide more than 20 hours per week in unpaid care at home. That's like having a whole second job! 

This year, I had the pleasure of co-developing a McMaster Continuing Education free online course for employers titled Creating Caregiver-Friendly Workplaces. The course is primarily for human resources managers who seek to attract and retain valued employees who may otherwise have to leave employment due to their care responsibilities. But working caregivers are welcome to take advantage of this free learning resource too and all students receive a McMaster University micro-credential upon successful completion. Check it out! 

Dr. Allison Williams is a McMaster researcher whose investigations centre on working caregivers. Her website is another goldmine of resources including infographics, quizzes, guides, checklists and even a National Standard for Helping Worker Carers in Your Organization.  This website is your go-to for user-friendly tools to embed in your strategic plan to create your carer-friendly workplace.

The third resource I want to tell you about is a new book for working caregivers and their employers, Working Caregivers: The Invisible Employees by Selma Archer and Zack Demopoulos. This is a wonderful guide full of real life work-care balance challenges and sound strategies to address them. This book is easy to read and offers managers and caregiver employees alike the inspiration, confidence and toolkit to engineer real change in the workplace. 

I highly recommend all of these resources for anyone seeking to alleviate personal working caregiver stress or those seeking to offer support through accommodations in the workplace. Our economy needs workers who are not stressed, exhausted and liable to quit due to burnout. There IS another way we can care for the aged, ill or disabled in our society and support caregivers to remain in the workforce. As our population ages, this culture shift for workplaces is not a luxury; it is essential. 

Tuesday 16 April 2024



I am delighted to host this guest post by Ottawa caregiver and author, Lise Cloutier-Steele. Lise is the author of There’s No Place Like Home: A guide to help caregivers manage the long-term care experience and her website can be found at

I am 71 years old, and like many seniors in my age group, I sometimes wonder what my exit from life will look like. Despite my daily efforts to eat well, exercise and maintain an active lifestyle, anything could happen. After all, illness does not discriminate. 

Recently, I watched a beautiful movie starring James Cromwell and Geneviève Bujold, whose outstanding performances moved me to tears a few times. Still Mine, was released in 2012; it was filmed in Ontario and New Brunswick, and it’s the true story of a farmer caregiving for his wife when she begins to suffer from dementia. The husband had a great plan to build a smaller home to make everyday living easier for him and his wife, and despite the many problems he faced with his project, it all worked out in the end. Still Mine is currently available on Crave TV, and you can watch the official trailer HERE.

I couldn’t help but think that this is how I hope things will work out for my husband and me, and there’s no reason why we couldn’t enjoy a similar happy outcome, one that would allow us to retain our independence and dignity right up to the end. But for that to happen, planning for any eventuality is key. 

There have been times when I’ve told my husband that if he became ill, and couldn’t care for himself, a long-term care facility would be out of the question. I always add: “That would be over my dead body!”. Of course, that assumes I would be available and able to coordinate home care for him, and advocate on his behalf. If that were not the case, health care system authorities would likely have him committed to a care facility in no time. 

If I became widowed, and could no longer care for myself, the same could happen to me. I know I would be devastated if I ended up in a facility where basic care and safety could not be guaranteed, as my late father was when he realized there would be no turning back to the life he once knew. It didn’t matter how many times I explained to him that Mom’s cancer left us with no other choice but institutionalized care for him. That just made him cry even more, and although his tears made me feel guilty and sad, I couldn’t blame him. Needless to say, knowing what I know now about long-term care, he had good reason to cry. 

It's been nearly 14 years since my father passed away, but the sad reality is that there remains a need for major improvements to long-term care programs. On September 7, 2023, Ontario Ombudsman Paul Dubé called for an overhaul of the government’s inspection system after his latest investigation found it was completely overwhelmed during the first wave of COVID-19. However valid and urgent the Ombudsman’s recommendations may be, their implementation will take time. You can read the Ombudsman’s complete report HERE

In his March 2023 annual report, Ontario Patient Ombudsman Craig Thompson had warnings of his own. He concluded that the COVID-19 pandemic is a factor that continues to expose and aggravate long-standing stresses on our health care system. Highlights of the Patient Ombudsman’s report are available HERE

Case in point: a few months later in November 2023, the Ottawa Citizen reported that there had been 7,157 confirmed COVID-19 cases among residents and staff of Ontario long-term care facilities since late August 2023. Of those, 181 residents were hospitalized and 106 died. It was not a big surprise then, to learn from this report that as of November 14, 2023, there were 105 ongoing outbreaks in long-term care homes across the province. Since then, I have come across dozens more recent media reports of persistent issues with long-term care, which naturally lead to greater cause for concern and worries about the future. 

The documentary film Stolen Time, recently released on March 22, 2024, is yet another compelling call for justice for residents in care. The film follows elder rights lawyer Melissa Miller as she takes on the corporate for-profit/nursing-home industry, which is notorious for its lack of transparency and accountability. The trailer for the film can be viewed here on the website for the National Film Board of Canada or on the website for the film company Intuitive Pictures. The film should prompt all Canadian seniors to do what they can to push the political will to effect change in long-term care once and for all. 

An important first step, as suggested by Ms. Miller in a recent television interview, would be to take the profit out of care. No one wants to spend their later years in an institution, and so more than ever, seniors need a plan for their golden years that would allow them to age in place with dignity. It could include a variety of options such as a granny suite, co-habitation, provisions for in-home care if needed, or a retirement residence where assisted-living services are available. 

My husband and I live in a senior community, where folks tend to look out for one another, and this bodes well for us to remain independent. Should one of us be left behind, neighbours would always provide a human connection. I guess this part of our plan to age in place has worked out well. It's the possibility of a non-optional long-term care outcome for either one of us that I continue to struggle with. 

Yet, it’s not like I wouldn’t know what to do, having experienced caregiving for my father while he was in a long-term care facility for a period of over three years. I think I would know instinctively what would, or wouldn’t work, for myself or my husband. 

In the meantime, home is home, where we plan to make the best of each day going forward for as long as we possibly can. If a health challenge becomes part of our life together, then we would face it with a strategy that has worked well for us up until now: common sense with a mix of love, kindness and compassion.
Photo of Lise Cloutier-Steele by Wayne Cuddington of the Ottawa Citizen

Thursday 4 April 2024


Trying to balance work while caregiving for a family member or friend can feel frantic and impossible. It's exhausting to prop up a fiction that we "should" be able to manage everything, all at once, by ourselves. But now, there is hope that workplaces everywhere will embed caregiver support that will draw and retain talented employees who also have care responsibilities. Both the evidence and the employer training are here! 

Over the past year or so, I have been working with a team at McMaster University to develop a new, free online course for employers who seek to attract and retain workers who have care responsibilities at home. And now, CREATING CAREGIVER-FRIENDLY WORKPLACES is open for registration! Tell your friends, your family members and everyone who has a stake in making workplaces caregiver-friendly!

The case for making it easier for employees to balance work and care isn't only about caregiver wellbeing (although that's important too, of course). There is a sound economic argument for businesses to engineer this culture shift: 

  • Over 60% of caregiver-employees are caring for their parents, or their parents-in-law
  • 41.5% of caregiver-employees are between the ages of 45-65, representing the most experienced in the labour market
  • 6.2% of caregivers are sandwiched between child rearing and caregiving, in addition to their paid work responsibilities.
So what can employers (Human Resources managers and other business leaders) learn in this course? They will discover a step-by-step approach to creating a system of flexible supports that meet the needs of their caregiver employees. For example, how to create: 
  • Support services, such as counselling, support groups and skills training
  • Flexible work arrangements, such as: working from home and job sharing
  • Strategies which support employees, such as: culture change initiatives and educational workshops
  • Paid or unpaid leave, such as: sick days/leave and family medical/compassionate care leave
  • Financial and other forms of assistance, such as: employee assistance plans (EAPs) and insurance coverage

Depending on the size of the business, employers can put their course learning into implementing a Canadian Standard for Caregiving Workplaces (see the links below), or they can pick and choose whatever strategies work for their individual circumstances. The point is, both workplaces and families are healthier and more sustainable with caregiver support. 

To access the Standard Carer-Inclusive and Accommodating Organizations, follow this link: CSA B701:17 (R2021). From the link choose View Access. You will be required to register to view the Standard, however, the login is free to viewers in Canada. Once you have created an account, you will be allowed to download the Standard.

To access the Helping worker-carers in your organization Handbook (CSA B701HB-18) follow this link: CSA B701HB-18. From the link, follow the same instructions as provided for the Standard.

The time for a change in the way that we work and live is now. Let's start by encouraging all managers everywhere to consider how they can shift workplace culture to accommodate the real, caring lives of employees. A great place to start is by learning how in this free course: Creating Caregiver-Friendly Workplaces AND participants receive a McMaster Continuing Education microcredential. It's a win/win for all.  

Resources: This course is based on the research of Dr. Allison Williams at McMaster University. Her terrific webpage of resources for both employers and caregiver employees can be found HERE

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!