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



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.


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. 


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! 

Wednesday, 1 December 2021

CircleOf - The Newest Online Caregiver's Best Friend

If you are a regular reader here in the Caregivers' Living Room, you will know that I love online tools that help family caregivers ease the burden of care by organizing the good will of friends and family members. Even if you have only one friend and one sibling who have offered to help out, an online tool makes it easier for them to follow through and for you to control accessing the help you need when you need it. I first became aware of CircleOf, a new app for caregivers, on Twitter. Then I dug a little deeper and decided it was time to share what I learned - this is a GREAT tool to broadcast your family needs and keep everyone in the loop easily and efficiently. I'm a fan! - Donna

1) What is the origin story of CircleOf? Did the idea come from your own caregiving experience? 


CircleOf’s CEO, Michael Jordan, was invited by a friend, Kate O’Keeffe, head of Cisco’s HyperInnovation Living Labs, to participate in a design thinking event considering the future of healthcare. About 50 to 60 high-level executives from big organizations like Cisco, Walgreens, Community Health Network, and the University of California San Francisco joined together with cancer patients and their care teams for two days to focus on improving outcomes. Mike’s team concentrated on care coordination and informed decision making. CircleOf was born out of a realization that really wasn’t about the patient, but instead more about the primary family caregiver’s need to be able to quickly assemble a support team of family and friends around them. How to figure out a way to make it easy for those caregivers to ask for help, receive help, and best organize the resources of their team.


While CircleOf originated in the Silicon Valley tech space, most of the CircleOf team have had deep, personal experiences with caregiving, illness, and loss. It brings us to this work in an extremely heart-centered way. Following losses of both parents to cancer in a short time, Kerry Lange, CircleOf’s COO and Chief Evangelist, and Alanna McLeod, Director of Engagement, worked together at Reimagine, a non-profit focused on breaking down taboos around death and dying. Karen Purze, Head of Product, cared for both of her parents while working for an Internet of Things company and wrote a book about the topic. When we saw what CircleOf was doing, we all asked, “Where do we sign up? We know how to build this product, we know what the experience should be because we are your customers.”



2) Tell us about the app, its features and how you made design decisions in adding those features.


Oftentimes, people suddenly find themselves as the primary caregiver, and they’re not only struggling to organize their new life as a caregiver, but they don’t know what they need right out of the gate. The CircleOf app helps you build the right team and puts the right resources and recommendations in front of you to get the support you need. You can ask for that help, then individuals can offer assistance, and it schedules everything automatically. It connects to your calendar, sends reminders and notifications, and keeps everyone in the loop in real-time. We know that caregiving can be unpredictable and things can change quickly, so our users really rely on those features.


The app also reduces a lot of the awkwardness of asking for help because you’re being transparent and specific about what you need as you lay out a care plan and a care schedule for a loved one. With CircleOf, you are able to assign appropriate tasks to the appropriate people, instead of everybody baking homemade cookies and no one helping with tasks that are truly meaningful. Then people know what their role is, and take responsibility for those tasks.


Constant communication also can take up a lot of precious time from a caregiver, who might have text threads with different friends and family, a group on social media, etc. With CircleOf, they can communicate in one place, and keep everyone updated. Essentially, caregivers are often relying on a number of different tools to manage all of their tasks and needs, but this app brings it all into one central place.



3) Is there a cost to use the app and if not, what is your business model? 


The app is currently free for anyone to download on the App Store and Google Play! We’ve also worked with large companies to include CircleOf as an employee benefit - as so many caregivers are also workers juggling part- or full-time jobs. And we’ve been piloting the technology with senior living facilities. We see a lot of potential for its use with professional caregivers who have multiple clients. All this being said, we’re constantly evolving and improving the app based on feedback from users, and this will help inform our future business model, such as upgraded paid features, or costs for multiple teams. But for now, it’s FREE!



4) What are the security features in the app? Can medical records be stored in CircleOf? Can health providers participate as part of a network of care in the app?


CircleOf is a secure, private care community, and we don’t share your information with anyone. It’s like having your own private chat and collaboration layers. For example, your team can have an inner circle, with whom you might share more personal information and ask for certain types of more intimate help. And you can have a broader friends and family group that gets other information and tasks. There’s a timeline that’s similar to social media platforms, group and direct messaging like text, and also video chat. So, you have access to your community in the way that people are used to communicating, but with more privacy and a sense of safety, because we know that caregiving and healthcare is sensitive for many people.


We don’t currently have a feature to store medical records; however, it’s something we’re considering, along with medication tracking and note-taking or recording for doctor appointments. We’re always innovating and coming out with new features. And our partners at Community Health Network, which is a large regional healthcare system, has an innovation team that we work with to test and launch advancements to the app technology.



5) What are caregivers saying about how CircleOf changes the caregiving experience? 


We’ve heard some wonderful feedback about how they love having all of their caregiving tools in one place instead of cobbling together scraps of paper and various chat threads to organize and communicate. It saves a lot of time, which is precious to caregivers and the loved one they’re caring for. And on a more emotional level, being able to gather their network and feeling like they’re surrounded with support is invaluable. No one can do it alone, even though we sometimes feel like we can or we have to. Sometimes we don’t even know what kind of help to ask for, even when our friends and family say they’re here for whatever we need. CircleOf helps relieve some of that stress. People genuinely do want to help, and this technology makes the connection actually happen!

Monday, 15 November 2021

When Caregiving Calls - A New Guide for Care

 Today it is my pleasure to introduce the very wise caregiving expert and author, Dr. Aaron Blight. I can't remember exactly where or when I first met Aaron online, but I know that I instantly recognized his original approach to caregiver support and we became fast friends and kindred spirits. I asked Aaron to describe his own caregiving journey and tell us about his new book, "When Caregiving Calls" - grab a coffee, read and enjoy! 

1) How did you become interested in caregiving? Tell us about your journey. 

 Family caregiving entered my life in early 2000, when my mother-in-law received the unexpected diagnosis of a brain tumor. After brain surgery to remove the tumor, she moved into our home, and my wife and I became official members of “the sandwich generation,” caring for our children and her mother at the same time. We cared for her mother through subsequent cancer treatments and cognitive decline, over the course of five-and-a-half years, until her death in 2005. After my mother-in-law passed away, I left my job in national healthcare policy at the U.S. Department of Health and Human Services and opened a private duty home care company. My company employed caregivers who helped aging and disabled people in their homes with activities of daily living. I also proceeded to study caregiving as a phenomenon of social science in connection with my doctoral degree. I sold my home care company in 2017 and have been focused on supporting caregivers ever since. 

2) In your book, When Caregiving Calls: Guidance as You Care for a Parent, Spouse, or Aging Relative, you talk about a theory of caregiver identity. Can you tell us about that? 

Family caregiver identity theory was developed by two applied gerontologists, Rhonda Montgomery and Karl Kosloski, as they studied family caregivers over the course of nearly three decades. The researchers discovered that family caregiving is marked by a series of role-based transitions, starting from an initial set of family relations that change over time due to changes in the caregiving context. As the care receiver’s needs become greater, the caregiver’s actions must change—and this changes the caregiver’s role identity within the relationship. I discovered Montgomery and Kosloski’s research during the literature review for my doctoral dissertation. Their work had a profound impact on me. Years after my mother-in-law had been diagnosed with cancer, and after providing home care services to so many families experiencing similar trials, the essence of the family caregiving struggle was finally explained to me. I was excited to share caregiver identity theory with the families served by my home care company. I included the theory in my book, and I continue to teach it in workshops for caregivers today. The value of the theory is in its practicality, universality, and simplicity. 

3) What advice do you offer to caregivers in your book for people who are facing a new diagnosis? How can someone prepare for the role? 

 It can be completely overwhelming to receive an initial diagnosis—and then realize how much there is to do and how unprepared you are for everything that is to come. First, breathe. Then go to work. One of the most important things a new caregiver can do is choose to adopt a learning orientation to caregiving. I’m talking here about a mindset. Family caregivers don’t start with training or education or certification that “qualifies” them for the new role. However, if you allow yourself to be taught by your loved one, by healthcare professionals, by other caregivers, by friends and family, and by your experience, you can—and you will—grow into the role. Faith in your ability to learn how to address caregiving’s challenges will accelerate your growth as a caregiver. 

4) What do you think is the toughest challenge that caregivers face today? 

COVID-19 has increased all of caregiving’s challenges. Caregiving is hard enough, but COVID has made it harder. In today’s environment, caregivers must worry about and protect against transmission of COVID-19 to their vulnerable loved ones. In addition, many of the measures that have been taken to protect us from COVID-19 have simultaneously increased the risks of loneliness and social isolation, especially among the elderly. We’ve seen long-term care facilities shut their doors to visitors, depriving families of the opportunity to see and touch their loved ones. Caregivers are less likely to engage respite care due to COVID-19 related concerns, which means they get less relief. The COVID environment has clearly created more stress for both caregivers and care receivers alike. 

5) You owned a home care company - what advice do you have for families who are considering being a paid caregiver into their home? What are the pitfalls and the advantages of using home care? 

Home care can be an excellent alternative to facility-based care, but the idea of inviting people you don’t know into your loved one’s home can be daunting. You want and need an agency you can trust. When Caregiving Calls: Guidance as You Care for a Parent, Spouse, or Aging Relative, contains tips for selecting the best in-home care agency—which includes asking several questions to determine if an agency is reputable and able to meet the needs of your loved one. Cost is a significant consideration. The cost of home care is usually calculated on an hourly rate, making the total cost directly tied to utilization. When an individual needs only a limited number of hours of care per day or per week, home care can be much more affordable than facility-based care. However, when intensive supports are required and the individual needs as much as 24/7 care, home care is likely to become costlier than facility care. Because utilization drives your cost, more hours of service will lead to higher overall cost. 

6) What do you think caregivers learn "on the job" that could benefit society at large? In other words, what qualities do we develop that others may not? 

Donna, in your book, The Four Walls of My Freedom: Lessons I’ve Learned from a Life of Caregiving, you wrote, “a life that we value and have reason to value is one that has at its heart caring and belonging.” I love that statement! Caregivers demonstrate and develop an array of the noblest human qualities—dependability, loyalty, kindness, selflessness, empathy, compassion, and love, to name a few. Today’s society is laden with so much division and strife that I actually wrote a blog post about how caregiving exemplifies the healing that our society obviously needs. Imagine what the world would be like if we collectively committed ourselves to caring, giving, and receiving across divisions of race, gender, politics, age, COVID-19 status, and so on, simply because we are all human beings. A caregiver looks beyond the scales of social identity to see and to serve the real person in front of them, which is a great lesson on belonging to our larger society.

Friday, 29 October 2021

Help! I'm a Caregiver and I Need Therapy!

About forty years ago, I had what we called then, a "nervous breakdown". My life unravelled as I sunk further and further into a deep clinical depression. Back then, I had a LOT of talk therapy. Slowly over time and with the help of medication, I pieced my life back together in such a way that afterwards, I was stronger and healthier than I ever could have been had I not faced down my demons and bad emotional habits. 

I am fan of therapy. So when my son was born with disabilities and I became a caregiver in earnest, I naturally sought out a wise and compassionate therapist - someone who I imagined would understand the challenges of giving total care to a very medically complex baby. One after another DIDN'T understand. "I can't treat you if you don't get 8 hours of sleep every night", a therapist said. "But how will that happen? My baby has a neurological injury that means he screams at night - he has what the doctors call neurological irritability", I tried to explain. "I'll write you a note saying you need more sleep", he said. I left the note on the office table, walked out and never returned. 

So imagine my delight when I discovered Stephanie Muskat, a Toronto-based social worker whose own family caregiving experience prompted her to found Compassion in Caregiving - a therapeutic resource especially for caregivers! Here, you can learn a bit about Stephanie and her work. But I also encourage you to tune in to a FREE WEBINAR in which I'll be chatting with Stephanie about what makes therapy tailored to caregivers such a rare and much-needed commodity! The webinar is November 9th at noon, EST. You can register HERE

1) Stephanie, you are a social worker who founded a caregiver support practice in the Toronto area called Compassion in Caregiving. How did this all come to be? Tell us the story of your practice. 

I founded Compassion in Caregiving in January of 2021. Although we are currently a virtual practice, I do hope to bring it in-person once the pandemic settles down. We service all of Ontario for private therapy and family counselling and we provide many support services to those around the world through our many social media channels. 

Compassion in Caregiving is an act of passion for me. When I was 19 years old my mom began to show signs that we later realized were a complicated mix of neurodegenerative diagnoses- primarily FTD mixed with Alzheimer's. As her young primary caregiver I sought out support as I was really struggling at the time and was mostly met with dead ends. None of the support groups out there were groups I could relate to. Many were comprised of spouses of a loved one with dementia who were in their 70s and 80s- they felt really bad for me as a young caregiver which only made me feel worse ultimately. 

I was part of a general caregiving group for young caregivers but as with many public government funded group, it was very time limited and once it was over my access to support was not there. None of my other therapists 'got it' or had the specific knowledge of caregiving that I was looking for. 

I always had a passion for mental health and health and spent many years in university volunteering and working in the mental health field. I obtained my MSW in 2015 from the University of Toronto and once I felt I had sufficient experience to start my own practice, I decided to found Compassion in Caregiving to fill in the gaps that many caregivers face. I offer specialized caregiver therapy and family counselling which includes assistance in navigating the healthcare system and social supports in the Ontario region and as a previous primary caregiver, I get it.

2) I know that you practice in a hospital setting as well as in private practice. What is the difference between offering your professional support in the hospital vs private practice? 

Yes I do. I am an inpatient acute care social worker at one of the largest hospitals in Canada. Unfortunately, as is the reality with much of acute care, my time with patients and their families is limited, particularly as inpatient social workers wear many hats aside from counselling and assisting families in accessing community resources. We are heavily involved in discharge planning and family and patient advocacy in the hospital, and as the pressures for available hospital beds always remain high, discharge planning is one of the main areas we assist in. I am able to provide brief solution focused therapy to patients and their families but not regularly and definitely not in the way I am able to in my private practice. I also only see patients and families for the duration of their hospital stay which can sometimes only be days. The therapeutic relationship is short. 

In my role, every patient is assigned a social worker. I take on clients automatically and they remain on my caseload for the duration of their stay in hospital.

Unfortunately current or previous patients of mine in hospital cannot become private clients due to hospital policy, nor am I able to discuss my practice. However, I do have colleagues who have suggested their patients reach out to me- again if they are a patient in my hospital I cannot provide private support but these patients can benefit from our other services on our social media platforms. 

Private practice is paid for (some insurance companies do pay for our support- many are paying for social work support these days), but I can offer regular, ongoing, tailored and deep emotional support that I am just not able to provide for hospital patients. 

3) What do you think is the greatest support need that caregivers have today?

Definitely specialized therapeutic support and assistance with navigating our healthcare system and the community supports available. It can all be so overwhelming and confusing.

4) I know that your work and interests focus a lot on the impact of illness or dependency needs on family. Can you say some more about that?

Yes that is correct. Both in my private practice and in the hospital I am working with clients and their family members who are significantly impacted by a recent or ongoing diagnosis that shifts the dynamic of an entire family system. Sometimes this means that an individual who was acting as a parent or who was managing certain tasks in the family unit (ie. bills, cooking, homemaking, was the primary income earner in the family household) is now experiencing a degenerative diagnosis and is no longer able to engage in those tasks. Oftentimes these individuals were also a main emotional support for other family and friends and are suddenly unable to be that support. This results in an increased dependency on other family members and friends to take over those tasks and shift their 'roles' in the original family unit. There is also now the added impact of the loved one's illness and changes on the family members which were not there previously. As you can imagine this results in a huge shift and upheaval in a family system and can result in a tremendous amount of stress and frankly 'chaos'. Everything changes in a dynamic that previously had an ongoing organic dynamic and flow.

5) What have you learned about how caregivers can make peace with loss, grieving and in some cases death of a loved one? 

I have completed many trainings on loss and grief and death, but nothing can prepare you for the real life work. Working in the acute care setting I have been at the bed side of patients when they pass away and I have to say that the peace and relief that is present in the room once the family knows their loved one is no longer suffering is one that is unmeasurable. Quite often a loved one has been in and out of the system for years and the family faces some relief to know that the difficulties they have faced and also the upheaval that the family has faced is no more. It is extremely difficult for the family to mourn the loss of a loved one, but I find there is more so relief after death unless it is an acute and unpredictable illness.

The most difficult part for caregivers, I find, is losing their loved one to an ongoing degeneration while they are still alive. Seeing their loved one change and shift into someone they do not recognize, but still meeting with them and engaging with them is so difficult and causes ongoing tremendous amounts of grief. Every new change in their loved one brings about a new cycle of grief. It is so difficult to manage and accept and although many have to come to terms with the loss over time, it is still extremely painful for them to experience. 

6) Finally, do you have any thoughts or advice about resilience and self-care when caregiving is prolonged over years? How can people get in touch with you? 

Don't wait until everything builds up and you are overwhelmed. Do not put off self-care and time for yourself until you feel that you 'need it'. Make time for it in the moment whenever you can, even if it's ten minutes a day. You may not feel as though you need it in the moment, but if you do not care for yourself regularly, stress can catch up with you very quickly all of a sudden and lead to burnout. And burnout is much more difficult to manage and navigate than regular self-care to prevent overwhelm. This is not a sprint. It's a marathon. Take care of yourself and pace yourself every step of the way.

To reach me, please visit my website at, on instagram @compassionincaregiving or on my podcast, Caregiver's Compass, which can be listened to on almost all podcast platforms.

Stephanie Muskat, MSW, RSW 
Licenced Psychotherapist (Ontario, Canada)
Founder, Compassion in Caregiving 
Instagram: @compassionincaregiving

Thursday, 14 October 2021


When our son Nicholas was two, he had an operation to insert a feeding tube in his tummy. It was a tough decision made a little easier by the fact that our son's cerebral palsy made sucking, chewing and swallowing so difficult for him that his growth slowed to an alarming rate. On discharge day, I received "training" on how to operate the new tube and pump. Stressed and exhausted, I nodded my head and did my best to appear like a competent mother. By the time we got home, I couldn't remember a thing. 

Over the years, I've become increasingly passionate about the need for caregiver training. Families deliver an amazing 70-80% of all community care in Canada, yet we receive almost no training or support even when our daily tasks are so complex that they are performed only by nurses in the hospital. 

Today I want to tell you about two FREE online training courses for caregivers that are offered by McMaster University Department of Continuing Education. The first is called Caregiving Essentials. It includes so many fantastic tools and resources such how to construct a "Caregiver Action Plan" and templates for note-taking at important doctor appointments. There's an active discussion board for sharing experiences with other caregivers and monthly webinars (spoiler alert: I facilitate the discussion boards and the webinars - they are guaranteed to be fun and interesting!). 

The other FREE course is Infection Prevention and Control (or IPAC) for Caregivers and Families. Using plain language with lots of visual infographics for good measure, this course explains how to break the chain of viral transmission, how to wear PPE correctly and how to protect our families from COVID19 and other flu viruses. 

What graduates are saying about Caregiving Essentials

"This course has really helped me understand a lot more about the caregiver rules and having to take time for yourself as well. So I thank you and this school for offering this course for free. I found it very helpful and it also gave me some time to myself to do something I have been wanting to do and that's learn more about the health side of things."

- Charity 

 Our course participants were in different stages of their caregiving journeys. We heard from people who had just started to become more involved in care, to people who had been providing care for decades or more. Please find shared below a sampling of the sentiments and opinions. These stories highlight the need for a flexible approach to caregiver education, and the various demands that caregivers face in their roles.

  • "I've referred at least 4 people...I've shared congratulations for offering something that is much needed in the community"
  • “I particularly liked that I could access it when I had time to. That was a big bonus for me, and being free is also helpful too. I found it exceptional. I found it very useful and very helpful.”
  • “The material was very well organized... It lent itself well to doing things independently and online which is what I was looking for.”
  • “ built my confidence because when your loved one becomes ill, it's very overwhelming...This kind of calmed me down and said, 'Yeah, I can do this. I can handle this’.”
  • “ was kind of refreshing to get the perspective that there's lots of people out there dealing with this...It helped me keep everything in perspective.”
  • “...the advance care directive... I had really never heard of before and so I took steps to put that in place after the course.”
  • “The resource list at the very end is complete and valuable...the fact that it was so full, I found that reassuring. Even though I’m in healthcare, I only found out about services through word-of-mouth, speaking to this person who went through the same thing or something similar. Navigating the system is difficult, but having that list at the end was reassuring that there are supports out there and I’ll l certainly be using it.”
  • “...there was a section around the health challenges, the mental challenges, and the social system challenges of a person, and my a-ha moment was around social isolation. I know I can provide good physical support. I know the house is safe. I know they’re getting to their appointments. But the part I didn’t realize was they’re in their home and they’re not leaving their home and they’re not interacting with the people who they used to before. What it’s going to spur me to do is look more at new day programs or clubs…” 
  • AND about the Infection Prevention and Control course: "I took the Infection Prevention and Control for Caregivers and Families course and I absolutely loved it! It shows you how quickly infections can spread as well as how easy it is to break the chain."
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Photo by Toa Heftiba on Unsplash