Friday 8 April 2016


I thought it was time for an update on what's been going on with me. Since Christmas, it's been busy! Here's what I've been up to:

My husband Jim and I went down to Cat Island in the Bahamas for a few weeks. Every year we stay at a little stone cottage on the beach called The Point House.  We love Cat - it's very undeveloped, populated by a few (deeply wonderful) friends, with breathtaking scenery. It was a perfect place to rest, read and work on my new book.  Thank goodness for the internet - we skyped Nick and Mom every day.

Ahhh, the new book! My co-author Vickie Cammack and I have been religious about chatting on a weekly basis to refine ideas, talk about structure and keep the project moving and growing.  I've published snippets that we've written, but here is a statement of our purpose:

What is this book about? Human caring relationships are the subject of this book; their fragility, their strength, and their meaning.  Natural care is like clean air or water. We can’t live without it and we expect it to be there when we need it. But we don’t teach it, value it or support it. Family caregivers are struggling and families are even collapsing under the weight of picking up after overtaxed health and social care systems. What is the future of families and of living and dying at home?  This book is a clear-eyed deep-dive into the present and future of our most precious national resource: loving care.

What is the central thesis?   Care is love in action. It is a source of wisdom, comfort, growth and meaning.  This kind of loving care must function within the realities of burden, obligation and efficiency, but it reaches far beyond. Care is a precious and fragile resource that can and must be taught, nurtured and supported. Three ways to do this are: embracing the language of care, valuing the knowledge of care and fostering new relational approaches to caregiving. The valuing and supporting of care in families will ensure that everyone may reap the benefits of giving and receiving care across the lifespan now and in the future.

Before leaving for our southern sojourn, I worked on a new health navigator program at the Children's Hospital of Eastern Ontario. Complex care parents said they needed help coordinating resources and assistance in and out of hospital, so two parent navigators were hired to complement the roles of system navigator and knowledge navigator. Finding a way around health, education, recreation, social services, government and local systems for complex families is so mind-bendingly impossible that three types of navigators work together to ease the way. It's all brand new and I helped out by writing the training protocols, orientation and resource materials for the parent navigators. Everyone hopes this model will help families.

For the past couple of years, I've had the pleasure of sitting on the board of NeuroDevNet, a Network of Centres of Excellence (NCE). NeuroDevNet is the entity that disseminates Canadian federal government money for research in the area of neurodevelopmental disabilities in children (autism, CP and FASD). I represent the voice of patients and families. It's been great fun to learn about research and my involvement with the universities led me to participate in a kind of dragon's den competition for major government funding of a three year project looking at the life course of children with brain based neurodevelopmental disabilities. Our project is called Child Bright and WE WON! You can read all about it HERE.  Work will begin in earnest soon and I'm looking forward to the excitement, optimism and camaraderie that Child Bright will bring to my life.

A couple of days ago, I opened my inbox and found an exciting message from Mark Stolow, the CEO of The Caregiver Network.  He and I had tossed around an idea for a podcast on advocacy for caregivers and I've recently learned that Mark got funded for the project, so it's a go! I teach advocacy to caregivers on a fairly regular basis, but I've never done an online presentation, so I'm looking forward to this new opportunity.

I continue to support Tyze Personal Networks (called Community Tyze in the USA), an online tool to coordinate the help of friends, extended families and paid supports in the lives of caregiving families. In our family, we use Tyze to coordinate our caregiving - I don't know how we'd cope without it.

The really important news is, of course about my family.  We are all doing pretty well, but there's been a few bumps in the road with Nick lately.  Right now, he has the flu. I'm going over this afternoon to give him some TLC - he's had a fever, sore throat and lethargy for the past week or so. We're watching him carefully because we know that a mild flu could turn sinister and even life-threatening very quickly in his case.  Mom is doing well, but she's slowing down a lot. I went to Montreal yesterday to visit, bring her new nightgowns, a maple fudge cake and homemade brownies (her favourite) and bring her out for a haircut and blow dry.  We had a lovely visit with lots of laughs.  Her regular and beloved helper Glenna broke her wrist recently, so my sister and I are picking up the slack and making sure that Mom has plenty of smokes and rum (if you read my blog regularly, you'll know my Mom)!

All in all, I feel blessed every day by the love in my family and by the opportunities I have to make a positive difference in the lives of family caregivers.

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