Saturday, 26 November 2022

When a Book Hits So Close to Home: The Lady With The Crown

When I was very young, I wished for some big event to happen to me, something truly dramatic - tragic, even. I hadn't yet heard the expression "Be careful what you wish for." 

I was 16 when my father had his first of three strokes. I remember the day - I was sitting in class. The sun was streaming through the window (for some reason I recall white, very bright light) and when the principle called me to the hallway, I felt special and important. My next memory is standing in the office, telephone in hand. My mother was telling me that Dad was in the hospital and had suffered a stroke. I must come immediately. What was a stroke? I don't remember how I got to the hospital, but I do recall standing at the foot of my Dad's hospital bed beside my sister, frozen in fear as he urgently "spoke" to me and my sister. Except it wasn't speech, it was garbled nonsense. I fled. Years later, I reflected sadly that he was probably trying so hard to reassure us that he was fine. 

I've just finished reading The Lady With the Crown - A Story of Resilience by Kathleen Canrinus. I devoured this riveting memoir over the course of today. I literally could not put it down. Kathleen's mother Dorothy was a larger than life, boisterous and willful community leader of sorts before a traumatic brain injury profoundly changed her and shattered the family life that Kathleen had known. Kathleen and her brother were teenagers, transformed in a day from sullen and distracted to urgently longing for their Mom to whole again. 

This book is for anyone who loves a great memoir, that goes without saying. But it will be especially meaningful (as it was for me) for those who have given intensive care to a loved one over many years. And Kathleen Canrinus did this for her mother in spades. The personal transformations that took place in the author's family and the making peace with unfairness is what struck me. Like my own mother whom I've written about here many times (such as HERE shortly after her death), Dorothy was a potent mix of sometimes infuriating opposites. But the author does not waste words, nor does she romanticise the events of her caregiving relationship. The language is spare and sometimes as she described disastrous events, I imagined her typing out the words, head turned away and eyes shut tight. 

But this is a book that is ultimately uplifting. Because although Kathleen Canrinus' caregiving experience was completely unique, she generously invites readers like me to reflect on our own lifetime of caring as we empathise with hers. 

I highly recommend this book and I'm going to give it to my sister. Then we're going to pick apart our memories and continue the job of making peace with what happened in our family. 

Tuesday, 22 November 2022

All Together Now! The Power of Teamwork in Caregiving

I actually published this post a few months ago but I want to reprise it because (pause for happy dance), I am hosting Dr. Brian Goldman on our next Caregiving Essentials webinar to talk about teamwork in caregiving! Join us for what promises to be a rich, rich discussion about how to effectively create and collaborate on care teams at home and in institutional settings. Free but you have to register to get the link - click HERE! 

Today I finished reading The Power of Teamwork: How We Can All Work Better Together by Dr. Brian Goldman and I had to share my excitement about it right away. There are SO many lessons here for family caregivers and the circles of care that we manage. I've written about Dr. Goldman before, notably in a review I penned of his excellent The Power of Kindness back in 2018. Dr. Goldman is an ER doctor in Toronto, and he is a compelling storyteller. He's the host of the CBC, widely syndicated White Coat/Black Art show as well as the podcast, The Dose. When Dr. Brian Goldman talks, I listen and learn.

So let me tell you what I learned about caregiving and leadership from The Power of Teamwork. I learned that groups are not the same as teams (we KNOW this but seeing the words in print made me stop and reflect on all the times I've been frustrated in "team meetings" for my son or my Mom and now I understand that it was because people at the table were actually in groups - groups that excluded me). I learned the term "flattened hierarchies." I love that! We are all human, we each have a particular role to play in a project of care, a role that is based on our talents, skills and knowledge. And from the team, leaders naturally emerge. And their roles aren't static; they can change, depending the situation. In his book, Goldman tells the story of Dr. Kevin Menes, an ER doc who happened to be working a shift on the night of the worst mass shooting in US history.  Fifty-eight people were killed on October 1, 2017, when Stephen Paddock opened fire on the crowd attending the Route 91 Harvest music festival on the Las Vegas Strip in Nevada. Nearby Sunrise Hospital and Medical Center treated 199 patients in just six hours. Dr. Kevin Menes took charge of operations. He was an exemplary team leader. Rules were broken to meet the needs of the moment, hierarchies were flattened. It is a riveting story of coordinated care in the most horrendous and chaotic circumstances.

Dr. Trevor Jain, a young doctor on the scene of a terrible Swissair plane crash near Halifax in 1998, set up a massive makeshift mortuary and set about identifying the remains of hundreds of deceased passengers. He reflected on his own experience and that of Dr. Menes, "If you let people do what they're trained to do, and grow into the role and encourage it, you as a leader, it's just going to make you look outstanding. It's not insecurity. A leader should never be insecure. They (the other team members) are just going to make you look phenomenal."

There are so many lessons for caregivers in The Power of Teamwork. If you feel like your circle of care has "sides" or you just want to be a more effective care team leader, buy this book now! It is wonderful.

Saturday, 12 November 2022

A Man Finds His Purpose in Caregiving | Ousmane | The New Yorker Screeni...

Lately I've been talking about "slivers of time" for self-care or reflection. If you can find half an hour today, watch this short film about a homesick immigrant who finds purpose and meaning in caring for an elderly neighbour with dementia. It's a quiet film shot in my hometown of Montreal. I found it to be so poignant in its many messages about family and the need to give and receive care. I send a virtual hug to everyone in the Caregivers' Living Room today. 


Monday, 7 November 2022

Canada's Caregiving Crisis and HOW TO FIX IT

Buckle up because today, the new Canadian Centre for Caregiving Excellence released a white paper on the crisis state of caregiving in Canada and HOW TO FIX IT. 

The report is titled Giving Care: An approach to a better caregiving landscape in Canada.  If you're a policy nerd like me, you can download the full report or, if you'd prefer the short version, just click the link for "Executive Summary." 

In a nutshell, the report identifies our biggest challenges this way: 

  • Services for caregivers and care recipients are insufficient, fragmented and difficult to access 
  • Financial supports are insufficient and ineffectively designed 
  • The care provider workforce is in crisis 
  • Supports for caregivers do not meet their current and future needs 
  • Leaves and protections for employed caregivers are inadequate
The report boldly asserts that caregiving is the next policy frontier for our country (I agree!). And here's what's being proposed to our elected officials: 

  • Create a co-ordinated approach to caregiving, through: a common and inclusive definition of caregiving; a national caregiving strategy; provincial caregiving legislation; and international caregiver recognition 
  • Improve, expand and invest in services for care recipients and caregivers, through: home and community care funding; mandatory assessment of caregiver needs; integrated care across services and sectors; and public navigator roles 
  • Develop strategies for supporting employed caregivers, through: expanded leaves and benefits, flexible work legislation and promotion, caregiver-friendly workplaces; and government leadership 
  • Develop financial supports that reflect the value of caregiving, through: inclusive tax credits and benefits; caregiver allowances or income; and increased supports for people with disabilities 
  • Develop the workforce and improve conditions for care providers, through: competitive wages and increased funding; professionalization of care provider roles; support and protection for migrants to fill workforce gaps; and a workforce development strategy. 
I want Canada to be the world's best place for caregivers to live and work. If we join hands and create a social movement for change, we can make that happen. Please share this blog post with your friends and family. And talk about these ideas online using the hashtag #CdnCaregiving! 

Tuesday, 1 November 2022

November Caregiver Support Challenge


November is many things. For Canadians it's the dark month, the lead-up to Christmas. For Americans, it's Thanksgiving month. For all of us, it is National Caregivers Month (well, it's really a designation that originated in the US, but ALL of us can and should claim it too because... why not?!)

This year's theme for National Family Caregivers Month is "Caregiving Around the Clock." It's a great theme and one that I'm sure resonates with every one of us. Because we DO give care around the clock. We are on call or actively giving care 24/7 without a break. 

Let's use this November to reach out to our extended families, friends, neighbors and others to tell them we need support. When someone asks, "How can I help?", have three responses at the ready. Maybe you can ask a sibling to sit with your loved one for a couple of hours. Maybe you can ask for a meal delivery. Or maybe you can ask them to listen when you explain a typical day in your caring life. 

"Ask for what you need" is my new mantra and this November is a good opportunity to do just that. Best of  luck and please let us know in the comments how your November support challenge works out. 

Monday, 26 September 2022

Artists as Designers of Dying and Funerals

 I've been thinking about death and dying a lot lately. Maybe that's because I watched all of the Queen's funeral or maybe it's because I read about the actor Alan Rickman's newly published diaries, Madly Deeply in The Guardian yesterday. 

It wasn't the diaries that caught my breath (although those are a delicious read), it was his wife Rima Horton's description of Alan's dying days: 

Alan’s last diary entry was on 12 December, but he had been getting weaker and writing less for some time. All through the autumn he was eating less and often feeling sick. But we continued to do most of the things that had always been part of our life. We saw films and plays, met friends, went out to dinner or entertained at home. Alan also spent a lot of time watching TV – his two favourite programmes at that time were Don’t Tell the Bride and Say Yes to the Dress. Our trip to New York in November was very important. To stay in our flat again and see so many of the friends who had meant so much to us over the years. Alan loved New York.

He went downhill after that. He was admitted to hospital on 20 December and never left.

The last two weeks of Alan's life were extraordinary. His hospital room was turned into a salon. Belinda (Lang) produced a table-top Christmas tree, Emma (Thompson) brought in a standard lamp, cushions and a throw to cover the sofa. And an infuser. Miranda (Richardson) added a window bird-feeder. I brought a beautiful table lamp from home.

Different friends came in each day. Sometimes, Alan told me who he wanted to see. Otherwise, they just came. There was often a lot of laughter. Alan was in bed but always a major voice in the proceedings.

He designed his own funeral. Ian Rickson (theatre director) was put in charge. Alan chose where it would take place, who would speak and what music would be played.

He was surrounded by people who loved him and up until 13 January was still in control of everything that was going on around him. But he wasn’t there after that, and he died at 9.15 in the morning of 14 January 2016. I was there. He wasn’t in pain. He just went.

    Alan was cremated on the morning of 3 February with close friends and family present. The funeral service was held that afternoon in the Actors’ Church in the heart of London’s theatre district. The chosen music was Uptown Funk and Take It with Me by Tom Waits. We finished with everyone singing The Sun Ain’t Gonna Shine Anymore. Then, in keeping with tradition, the Reverend Richard Syms asked us to give Alan “one last wonderful standing ovation”.

    The beautiful image of Alan Rickman's hospital room so full of love expressed in the presence of friends and in brought objects of beauty and comfort made me think that we need artists to demonstrate guide us in creative solace. We need the fearlessness of actors to attend to the moments of dying. There is something so resolute and loyal about the gifts bestowed on Alan - and it seems to me that each person asked himself, "If I were Alan, what would comfort or delight me? What would demonstrate to me that I am loved?" 

    There were touches of this love and creativity in the Queen's funeral too. Centuries-old traditions of fanfare have been honed by artists throughout the ages for the monarch's send-off. And these traditions are familiar to the British people - they represented a heartfelt goodbye from everyone in the country.

    I want artists at my deathbed. I want actors to visit me and not be afraid to laugh. And at my funeral, dance music and a standing ovation would be awesome. I hope my family reads this. ☺

    Saturday, 24 September 2022

    The Perfect Fake Independence

     The other day I was browsing facebook posts in an online caregiver support group when I read, 

    "My mother was living the perfect life of fake independence when she fell and broke her hip. Before yesterday, she lived in an apartment that adjoins our house. I cooked all her meals and checked on her multiple times every day, just dropping in for "chats" or to deliver folded laundry." 

    The idea of fake independence really got me thinking. Isn't this what we all try to achieve? Propping up the dignity of our loved ones, hiding their dependency needs behind closed doors, pretending that they're fine, just fine. 

    I remember a conversation with a girlfriend a long time ago that went like this: "I know exactly how to keep my husband "Henri" (not his real name) happy. I plant a seed in a pot of earth and place it on the window sill. Every day I water the little pot and make sure it has plenty of sunshine. One day, the plant is grown and a flower blooms. Come here, Henri, I say! Come and look at what YOU have DONE!" We laughed so hard and I knew exactly what she meant. 

    Doing the work of keeping the family well even as the needs of a loved one's age, disability or illness progress is invisible work. Part of the job is making sure that it seems easy and no trouble at all to meet everyone's needs. Even better than that is to prop up the fiction that THEY are in fact doing these tasks themselves. But one day, the smoke and mirrors will evaporate when a hip is broken or when a caregiver becomes ill or incapacitated him/herself. This is a terrible moment. 

    Is it a good thing to create perfect fake independence for someone who is frail or ill? I don't know. Maybe it's what some people want but I think if my husband or my daughter was helping me get through the day, I would want a clear eyed view of who is doing what. I would want to thank them. And I would want to fold the laundry myself, if I could.