Tuesday, 9 August 2022

COMMUNICATING WITH LOVE - How to Relax and Chat With Someone with Memory Loss

If you care for someone with a diagnosis of Alzheimer's or dementia, you have probably seen this image on social media: 

I've posted it on my Facebook page, The Caregivers' Living Room and the most common reply is, "That's all very well, but those instructions are more easily said than done!" I have to agree. 

The good news is that I am writing to tell you about a book that arrived last week in my mailbox. It's called Communicating With Love: Creating Joyful Conversations with Memory and Elder Care Residents by E. Jane Wyatt. I had agreed to review the book and this afternoon, I read it in one reading (it's part of the author's Caregiver 10 Minute Guide Series). Easy to read and published in large print, this is a gem-filled treasure trove of wisdom. Here's what I learned: 

Communication with someone who has a significant memory deficit is much easier with careful planning. This may seem self-evident at first, but it's a lesson that I've had to learn and relearn over the 30-plus years of my own caregiving. Planning and communication are the details that make or break minutes, days and lifetimes of both caregiver and care receiver. The author shares wonderful examples of good planning and poor planning when visiting someone in their own home or in institutional care. 

Communicating when someone may not recognize you is a tricky business. The challenge of keeping a conversation going when someone has advanced dementia is enough to keep many people away. But again, the author gives us a gentle and easy-to-follow guide to introducing ourselves (how to enter the room and say hello), how to ask open ended questions with memory prompts, how to tell a "therapeutic fib" and other tricks she has learned through caring for her own mother and for a friend, both who suffered from severe memory loss. 

Communicating With Love is a companion book to its precursor, Visiting With Love. Both are very reasonably priced and available from all online booksellers. I highly recommend them.

Sunday, 10 July 2022

Lessons for Caregivers in a New Book, The Power of Teamwork

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."

So coincidentally, today I was scrolling through my personal facebook page when I saw a post from my friend, fellow complex care Mom and caregiving coach, Brenda Blais-Nesbitt

"Team work makes the dream work!!"
This was so true of Nikki's care in hospital tonight. She had such good days on Wed and Thurs and I really thought she would be going home on Thursday but that hope was vanished for a number of reasons.
I guess the fact that it didn't happen was a blessing in disguise or we may have been right back in the ER as there have been a few glitches. Today was a struggle for her.
But here's the thing. I had a theory about why Nikki was both lethargic and had increased difficulty breathing today. AND I knew how to fix it. At home, I would have just done it. But being in the hospital is a different story. So, I proposed my plan to the nurse ... it involved a medical procedure that I can and have done on a regular daily basis for the past 11-12 years. The nurse had to ask the Resident to order it though, before I could do it. The Resident (who did not know Nikki) did not want me to do it. She wanted to try something else and wait to see if that alternative would solve things by tomorrow for her. That meant Nikki would be incredibly uncomfortable with increased work of breathing throughout the night.
And then Nikki's nurse advocated for me and my idea. She agreed the procedure needed to be done ASAP for Nikki's comfort and to help her BREATHE. She also advocated strongly with the Resident that I be allowed to do it. The nurse explained that I knew Nikki's anatomy better than anyone and that I had significantly more experience doing the procedure than she (the nurse) did (she had done it twice in her 3 year career). I have done the procedure thousands of times and I've also trained all of our home care nurses on it as well.
The Resident consulted with the general surgery team to come up and do it. They gave her their blessing to let me do it. And you know what? I am happy to say that it was the BEST decision ever. By the end of the procedure Nikki was alert, breathing SOOOOO much better and will have a much more comfortable night.
This is what collaboration is all about. Collaborative care and team work literally did make the dream work for Nikki today. For someone as complex as Nikki is, it literally does take a team working together for a common goal - Nikki's comfort, her health, and her safety. Thank you to a very dear friend of mine who recently pointed out to me: Nikki has a circle of care around her, one that I've been very good at allowing others enter to help me care for her. What's not in a circle? SIDES!! There should be no sides in care. It's truly a privilege to be in Nikki's circle and be joined by others who are surrounding us with physical care for Nikki, and love, support, and guidance for both of us through such challenging times. Team work really truly does make Nikki's dream work for her.

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.

Sunday, 12 June 2022

All My News: A Personal Update

 It's Sunday morning and the thrum of rain on our metal roof is lulling me into a thoughtful mood. It's a good day for writing. So I thought I would pause and reflect on my life and activities. Here's what's been happening: 


Jim and I have been updating our wills, Powers of Attorney and financial plans. Nicholas has a Power of Attorney naming us as his POAs but he needs a will. This requires a capacity test by the lawyer. So, next on our to-do list is prepare Nick for the test and coach him on his assets and various pension benefits. Nick needs a will because he has an asset - a Registered Disability Savings Plan, a financial instrument in his name that we've contributed to for many years. It's a great savings tool for Canadians with disabilities because the federal government matches our contributions up to a possible maximum of $90,000. This RDSP plan together with the Henson Trust that Jim and I set up in our wills ensures that Nicholas will have the money he needs to provide all the "extras" for a good life that we currently pay for, after Jim and I die. We've thought a lot too, about setting up a circle of social and medical decision-making family members and friends that will outlast me and Jim. For this aspect of our future planning, the resources available at the Canadian PLAN Institute have proved invaluable. "Safe and Secure" by Al Etmanski has been our essential guidebook throughout this whole family future planning exercise. 

Apart from future planning, I've been coordinating wheelchair modifications and new slings for Nick's ceiling track lift system. Of course Jim and I continue to carefully consult on our family's safe re-entry into society, given that much of the country believes that Covid is over (it's not). We speak with Nick on the phone or zoom every day and visit at least once a week (if his schedule allows!). 


I often laugh as I explain to new acquaintances that I am living my life backwards. For most of my adult life, I was a full-time primary caregiver for Nicholas and part-time helper for my Mum. Then in 2011, Nick entered his wonderful medical group home where he is now living his best adult life with the help of one to one nursing support. Mum died in 2018 at the age of 96. 

So, I began my working career as an older adult. I'm 67 now and I work on a variety of projects that spark joy and passion in my heart. I facilitate a free, online course through McMaster University Department of Continuing Education called Caregiving Essentials. It's a great course and for me, one of the best parts is hosting a (free) webinar series in which I get to have the MOST interesting conversations with all sorts of fascinating guests. You can watch all of our past webinars on YouTube HERE

Another project I'm deeply involved in at McMaster is the Family Engagement in Research Course. It pairs family members of children with disabilities (all ages) together with researchers in the field of disability. Course participants work in small groups to learn both the theory and practice of family-engaged research partnership. The course became so popular that we've evolved a new Leadership Academy to be launched this fall (stay tuned for more news). 

I've just joined the Advisory of the Canadian Centre on Caregiving Excellence, a new organization that promises to radically shift (in a good way) the manner in which both paid and family caregivers are supported in Canada. It's fantastic and I can't wait to see the change that's coming. 

This Thursday, I leave Ottawa for Canmore, Alberta, where I'll be joining fellow board members for a weekend working retreat of the National accessArts Centre. It's an AMAZING arts training and exhibition centre for both passionate amateur as well as professional disabled artists. 

I care so much about all the work I do for all these organizations because they each have an important role to play in upending power structures that oppress people with serious health challenges or disabilities and their families. I believe everyone who experiences being marginalized (including us caregivers!) should have an equal place at those decision-making tables that concern what happens in our daily lives. I also believe in the worth of my own and others' caring life experiences and I talk about that worth every chance I get. 


I've been taking care of myself this spring by spending time with friends on the golf course and tennis courts. For me, keeping fit has been harder during Covid because I used dance for fitness. I'm still super careful about masking indoors so the gym is out of the question. That means I've had to (re)learn outdoor sports from my youth. During my 25 years of caring, I could never leave home to pursue any kind of sports in my community, but there's nothing stopping me now. So, I've taken lessons and I'm out there doing my best (which isn't very good). As they say though, golf is a good excuse for a lovely walk with friends and for me, tennis is about the laughter at both the good and the terrible shots. 

Me with my tennis coach, Petra Januskova - thank heavens she is so kind! 

Daisy is a guest of honour at our little (not fancy!) golf/tennis club! 

From my house to yours, I wish everyone who visits The Caregivers' Living Room a restful day in which at least one person says to you: THANK YOU. 

Saturday, 16 April 2022



For 23 years, we ran a “home ICU” for our son Nicholas. Nick was born with severe cerebral palsy and he is very medically complex. Moving from crisis to crisis with multiple diagnoses meant that I needed someone in our circle of care to be my close partner in assessment and medical decision-making. Luckily, that partner was our family physician. And he made house calls.


Before our GP agreed to take Nicholas on his caseload I would scan my son for frightening new symptoms, alone at home wondering whether I was witnessing early signs of a life-threatening crisis or simply a fleeting and insignificant manifestation of his disability. Should I call 911 or do nothing? I never knew.
One day, I asked our GP why he took on complicated patients like my son. He replied, “Oh, I guess I’m just OK with uncertainty.” I could have hugged him. When I asked him why he was willing to do house calls, he smiled and said, “Seeing you all at home, I get the information I need to make the right diagnosis. Plus in the end, it saves me time.”


This doctor was my partner in care and my co-assessor (he’s now retired but luckily, he trained his replacement to follow his methods of home-based care). The pandemic has added virtual visits to our menu of appointment options. But in our family, those virtual visits are very effective only because our doctor has made a study of Nick in his environment.


Our GP is sensitive to changes in my son’s affect – he can sense changes on a computer screen because he knows Nick in real life, at home. I can envision a better system for delivering care in the community – one in which the home is the examining room.


Of course patients must visit the clinic from time to time for various tests and procedures, but there is nothing like a home visit for a doctor to understand an illness experience in one’s own environment and in my own case as a caregiver, to explain it. In my opinion as a frequent user of medical services, patient and family centred care should be located in the patient and family home. It’s that simple.

Monday, 4 April 2022

National Caregiver Day in Canada: All the News!

 The first Tuesday in April is National Caregiver Day in Canada and this year, there is lots of news to share! 

Although it doesn't formally launch till May, activities at the newly minted Canadian Centre of Caregiving Excellence have begun! I am so honoured to serve on the advisory board. I don't know if there's a word in english for a potent mixture of delight and optimism, but that's what I feel about this new centre. I know that a new era of support is dawning for Canadian caregivers. Here's a snippet from the centre's webpage: 

Our Mission

The Canadian Centre for Caregiving Excellence supports and empowers family caregivers and care providers, advances the knowledge and capacity of the caregiving field, advocates for effective and visionary social policy, with a disability-informed approach.

If you are regular reader of the Caregivers' Living Room, you'll know that I facilitate a free online course at McMaster Continuing Education called Caregiving Essentials. The course has rave reviews from a wide range of caregivers (both paid carers and family caregivers) who want to enrich their understanding of both the family caregiver experience for their own families and for families they may be serving in a paid role. All are welcome! The big news is that the Caregiving Essentials course is now available in FRENCH! Check it out here: Les Soins Essentials. And finally, if you're not already a listener, Caregiving Essentials offers a monthly free webinar with yours truly interviewing the most interesting guests. I always try to pry open topics that matter deeply to us, but many of us rarely discuss. You can find the link to register for webinars HERE and you can have a look at past webinars HERE

I am a champion of caregiver training and support. One important way that we can contribute AND be supported is by partnering in health research. Because I'm the Mom of a young man with cerebral palsy, I am a family partner in disability research. I'm part of a small team that co-developed and co-instruct a course at McMaster University called Family Engagement in Research. The course is completely unique in that we train researchers and parents of children with disabilities in both the theory and practice of working together. The parents' lived experience of raising children with disabilities informs both what is researched and how it is researched. The course has been so popular that we are now developing a new Leadership Academy for graduates of the Family Engagement course who wish to take their skills to the next level in order to partner at an organizational or regional level. The Leadership Academy launches in the fall of 2022 - I'll keep you posted as it develops! Oh, and by the way, we are planning to scale the Family Engagement in research course to other areas of health research in longer term. Wouldn't a similar course for Alzheimer's or dementia researchers learning together with caregivers be fantastic? 

Finally, an online event especially for working caregivers on National Caregiver Day: The Vanier Institute is hosting a free webinar titled Balancing Work and Care: Strategies for Meaningful Employment. It's April 5th from 1-2pm and you can register HERE. 

Happy National Caregiver Day to all my fellow Canadian caregivers and families! 

Friday, 18 February 2022


Today, February 18, is National Caregiver Day in Canada and it seems like a great time to tell you about all the great opportunities for caregivers that are new and exciting. So grab a coffee and click the links in the list for more information!

1. A totally FREE online course for caregivers from McMaster University Department of Continuing Education titled CAREGIVING ESSENTIALS that includes learning modules about 

  • Adopting the caregiver role, including legal and financial information
  • How to navigate the health care system 
  • How to take care of yourself so you can care for someone else
  • Health and medical information management
  • Resources
  • COVID-19 Conversations Corner
Participants who achieve at least 80% on the quizzes receive a certificate of completion in the form of a micro-credential (a qualification that you can add to your LinkedIn or Facebook profile! 

And more exciting news: McMaster Continuing Education is pleased to announce Les Soins Essentiels, a free online, non-credit course designed to support and guide French-speaking caregivers.


The course content and activities are available to be completed at your own pace, when it's convenient for you. This course will guide you through five modules, and direct you to a wide variety of resources. The skills and knowledge learned are meant to benefit caregivers in any way they choose.


Beginning March 7, you can register and access the course by clicking here. The course will run from March 7 to June 24, 2022.”


2. Full disclosure about the Caregiving Essentials Course: I facilitate it and so I had to list the terrific monthly series of FREE WEBINARS that complement the course (but are open to the public). Bookmark THIS SITE to register for each upcoming webinar. If you click to register today, you'll be signing up to join me and Sue Robins on March 2 at noon - we'll be talking about Sue's new book Ducks In a Row and all about how experiencing health care as a patient or caregiver shouldn't be so difficult that it makes us cry. If you can't make the live webinars, you can always check them out along with a selection of terrific past webinars I've hosted HERE. I guarantee, this is fun and interesting listening (well, I had fun and thought the conversations were super-interesting, so naturally I think you'll agree! 😁)

3. A fantastic new announcement is the creation of a new Canadian Centre for Caregiving Excellence. A program of the Azrieli Foundation, The Canadian Centre for Caregiving Excellence supports and empowers caregivers and care providers, advances the knowledge and capacity of the caregiving field, advocates for effective and visionary social policy, with a disability-informed approach. Stay tuned here and on The Caregivers' Living Room Facebook Page for more information about this centre as it evolves. This work will really make a positive difference for caregivers in Canada moving forward! 

4.  Another FREE course for caregivers at McMaster Continuing Education is Infection Prevention and Control for Caregivers and Families. In this course, you will learn:
  • Important terms and concepts such as infection and germs
  • Hand hygiene and handwashing best practices
  • Personal Protective Equipment (PPE), including masking
  • Environmental cleaning
  • Navigating infection realities during the pandemic

Upon successful completion of the course, you will receive a co-branded McMaster Continuing Education and Desire2Learn Open Courses Certificate of Completion to recognize your achievement.

5. The Waiting Room Revolution is my new favourite podcast. Drs. Hsien Seow with Sammy Winemaker are the dream team of palliative care experts who guide patients and families to have the conversation THEY want with their clinicians and extended families. But there is so much to learn here for ALL caregivers. 

I hope all caregivers in Canada have a fantastic day today. Together, let's celebrate our role and our contributions!

Sunday, 30 January 2022

Two Cups of Tea and Slivers of Time


The other day I recorded a short video for the (free!) online Caregiving Essentials course that I facilitate at McMaster University Department of Continuing Education. I was talking about self-care. And I was reflecting on the idea of (and sorry if you've heard me say this many times before) that there are two people in a caregiving relationship and they both need care. That means YOU need care just as much as your loved one. But given that many of us are on call 24/7 and we are exhausted, doesn't caring for ourselves sound like just one more thing on a long list of essential tasks?

It doesn't have to be so. I call my approach "two cups of tea." When your loved ones says "I'm thirsty, would you bring me a cup of tea?", don't think "Yes, right away! I'll have mine later." No, make two cups of tea and enjoy yours now, while it's hot. If you want to read a book, read aloud together. If surfing the web is your solace and relaxation, find something to watch or listen to that you will both enjoy. If none of these things is possible because of disease progression or cognitive impairment, think of "slivers of time." One caregiver told me that she does sudoku puzzles when her husband is in the bathroom - we had a good laugh at that one. Yesterday I looked at the image above and I did two things: I read some poetry (the gorgeous words of the Irish poet Seamus Heaney) and I wrote this short poem...

Pour yourself a cup of tea and tell me about your slivers of time.