Saturday, 16 April 2022

THE DOCTOR WILL SEE YOU NOW - AT HOME

 


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

FOR NATIONAL CAREGIVER DAY: ALL THE GOOD THINGS

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.


Sunday, 2 January 2022

The Tiniest New Year's Resolution

It's the new year - a time for hope and resolutions. But it's also 2022 and we're in the midst of a new surge in the pandemic. The usual template for hope and resolutions doesn't fit. So what ARE some positive changes we can make right here, right now? Maybe this New Year offers us an opportunity to look inward and reflect on the meaning of our caregiving lives. Can we make tiny changes that will help nudge us into a clearer sense of self?

For caregivers, change is not so easy.  We want our imaginations to drift into the dream territory of “who would I like to be?”, but we are pulled back quickly to, “who MUST I be?”  Even the question of “who have I become?” for caregivers is tricky and complicated.  Perhaps the only answer to that query is found in another question, “Who WAS I?”

For caregivers, the dance of competing identities is refereed by personal freedom or the lack of it.  Ideas of spontaneity, whimsical choice, time wasted, hobbies enjoyed – these are foreign to most caregivers.  And yet, our true selves are most evident in such deeply personal activities.  Unfettered by the concerns of others, do I prefer solitude or company?  Would I choose to knit or to dance?  Taken together, these choices tell us about ourselves and give us a clear sense of who we are, or who we used to be.

Time and time again, caregiving counsellors wag their fingers at us, “Take time for yourself”, they say.  But sometimes, carving out space and time is not so easy, especially if that muscle isn’t exercised regularly.  I remember once, sitting at home when my husband took the children to the park.  I didn’t know what to do – I tried to read a magazine, but the pictures and writing were meaningless to me.  I had lost my sense of self.  I was given a sliver of freedom,  but I didn’t know what to do with it.

Sometimes layering on architecture for action helps.  A thought or idea can perform this function.  Something like, “I can’t go outside today, but I am here in this room.  What actual choices do I have here, right now?”  Taking time to look around and choose to wash the dishes instead of baking a cake can be revealing.  Pondering the meaning of small choices can help to answer the question, “Who am I now that I am a caregiver?”  Choosing to wash the dishes may provoke a realisation that warm, soapy water is soothing, or that there is satisfaction in a tidy sink.  Perhaps baking a cake is an act that is infused with love and the memory of birthdays past.  Perhaps these choices echo back a message that the caregiver identity is a nurturing one.  Meanings that can be discerned about personhood from small choices in daily living will fuel a sense of power and self-knowledge.

Perhaps a worthy caregiver New Year’s resolution would be to reconcile past and present identities.  “Who would I like to be?” is more difficult, but not impossible to ponder.  Maybe the way toward that tricky territory is to change the question to, “Who would I like to be today?”  The answer could form a worthy resolution for 2022.

From my family to yours and to all Caregivers everywhere, Happy New Year.


Wednesday, 22 December 2021

THE TWELVE DAYS OF A CAREGIVER CHRISTMAS

 

This is a reprise of a Christmas post from 2017. Hasn't the world changed since then?! Then again, time moves more slowly in caregiving. Merry Christmas, everyone! And may we all stay safe and healthy in 2022. 

My words to the carol "The Twelve Days of Christmas" are fun, but they reveal a truth about caregiving, too. We all begin with a task or two. "Oh, it's not much", we think. "That's no trouble at all." And it isn't. But then two tasks becomes four and four becomes eight, and so on. Soon, we discover that we are very, very tired. But nevertheless, we persevere. So here's to all of you in celebration of the loving care you provide every day of the year.



On the First Day of Christmas on my list of things to do: I cooked dinner for my fa-mi-ly.

On the Second Day of Christmas on my list of things to do: I shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Third Day of Christmas on my list of things to do: I called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Fourth Day of Christmas on my list of things to do, I picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Fifth Day of Christmas on my list of things to do, we went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Sixth Day of Christmas on my list of things to do, I did six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Seventh Day of Christmas on my list of things to do, I bought seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Eighth Day of Christmas on my list of things to do, I disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Ninth Day of Christmas on my list of things to do, I ordered the meds, disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Tenth Day of Christmas on my list of things to do, I calmed jangled nerves, ordered the meds, disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Eleventh Day of Christmas on my list of things to do, I wrapped all the presents, calmed jangled nerves, ordered the meds, disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Twelfth Day of Christmas, I poured myself a drink, calmed jangled nerves, ordered the meds, disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

HAPPY HOLIDAYS, EVERYONE!

From me and my family to you and all of your loved ones, I wish you a very Merry Christmas and Happy Hanukkah this holiday season. May 2022 be a good year for all of us! xox


Marjorie "Tootie" Thomson-Higginson 
Dec. 24, 1921-August 16, 2018


Friday, 17 December 2021

ADVOCACY BIG AND LITTLE: You Can't Do Caregiving Without It

I have the pleasure of facilitating a free online course called Caregiving Essentials, offered through McMaster University Continuing Education. A companion project is a free monthly webinar series, also called Caregiving Essentials - it's open to anyone, anywhere. You just have to register to get the zoom link. 

Anyway, I wanted to share my recent webinar conversation about advocating in caregiving with friends and thought leaders in caring, Maggie Keresteci and Sue Robins. I spoke with them in my latest webinar and ohhh man, did we ever have a fun and interesting conversation!!! 

Grab a cup of tea or coffee and have a listen. If thoughts about your own advocacy wins or losses come to mind, post them in the comments - I love to hear from you! 



And if you have time for more holiday listening, you can hear my chat with caregiver and social worker, Stephanie Muskat HERE.  We shared personal stories and talked about Stephanie's clinical therapy practice especially for family caregivers. Want to register for more webinars? Go HERE. Next up in the Caregiver Essentials webinar series is my chat with Dr. Pat McGrath, one of Canada's most distinguished psychologists and researchers in caregiver trauma. Join us for that one on January 11 at noon EST if you can. 

AND FINALLY, A CHRISTMAS TREAT FROM ME TO YOU

Here is my recipe for White Chocolate, Cranberry, Pistachio Bark - Perfect for making with your loved one, giving or just eating it all yourself! 



1 pound white chocolate (I use Baker's or you can use the same quantity white chocolate chips)

1 cup dried cranberries

1 cup shelled, salted pistachios

Melt chocolate in a plastic or glass bowl in the microwave - start at 2 min. on high, then if the chocolate is not all melted, stir and continue microwaving for 25 seconds or until melted (but not burnt!)

Stir cranberries and pistachios into the chocolate. Pour onto foil or parchment lined cookie sheet and refrigerate for at least one hour. Break into pieces and enjoy!