THE CAREGIVERS' LIVING ROOM A Blog by Donna Thomson
Tuesday 16 April 2024
PLANNING FOR THE LONG TERM
Thursday 4 April 2024
SUPPORT FOR WORKING CAREGIVERS? NOW THERE'S A WAY - SPREAD THE WORD!
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.
- 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
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
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
Tuesday 28 November 2023
The CCCE Summit Day 2 - Visit or Revisit the Highlights!
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 Award. The 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!