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Category Archives: Network Stories

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Caring, Inspiring, Teaching: Caregivers’ Careers

You can see in Susan Beayni’s eyes just how much she loves her daughter, Rebecca.  Love, contribution, friendship and community have been the pillars upon which Susan has built her personal and her professional life.  My interest is in how lo… Continue reading

Jim Flaherty, poverty fighter

Today, Jim Flaherty, Canada’s former Minister of Finance is bring honoured with a state funeral. Even his critics acknowledge his commitment to people with disabilities and their families. They point to the Registered Disability Savings Plan as the highlight. My commentary, Thanks to Jim Flaherty Canadians with Disabilities can Fulfill… Continue reading

Manufacturing a Crisis

Recently a medical crisis was declared. The result was a tremendous outpouring of anger, resentment and judgment. People were called names. Consideration was given to removing a parent’s right to make medical decisions with regards to their children. Some even advocated for removing the children from those parents who didn’t comply with the proclaimed action needed to ward off the impending medical crisis.
The crisis that triggered this outpouring of anger and judgment? An “outbreak of measles”. The media has been incredibly vigilant in reporting the few hundred cases of measles in Canada in recent weeks. By last count there have been 375 cases reported in British Columbia, six in Calgary, one in Edmonton, 11 in Regina and 11 in Ontario (Huffington Post, April 13, 2014).
Individuals of my age are a bit mystified by the intensity of the purported crisis. As someone who grew up in the sixties, most everyone I knew contracted measles at some point in their childhood. Up until 25 years ago almost 100% of children contracted measles. But suddenly, a “measles outbreak” is resulting in a reaction as intense as the SARS crisis of a few years ago or the AIDS epidemic even prior.
How did this event become so disconcerting that normally well meaning and well-intended individuals feel compelled to treat others badly?
Two colleagues shared with me the impact of this purported crisis on their lives. One, a mother of a four year old, informed me that she finally succumbed to having her daughter vaccinated for measles after a barrage of phone calls day after day insisting that she “do the right thing and get her daughter vaccinated”. “You won’t be able to live with yourself if your daughter gets measles” she was informed.
The second, another mother, shared with me the following:
“Hey, there’s a measles outbreak! Have you heard? It’s got just a wee bit of media attention. I’m having a difficult time filtering out the unkind things people have to say about people who do not vaccinate. Selfish. Should be kept in a bubble/sent to an island/excluded from society. Stupid. Negligent. It’s amazing how nasty people can be, and how it is apparently okay to suddenly become unkind about parental choices when the topic is vaccination.”
I’ve received my own dose of unkind words and judgments when I’ve attempted to defend the rights of parents to make an informed decision with regards to vaccinations. CTV News reporter Jon Woodward holds people like me responsible for the reduction in vaccination rates in his article/commentary – ‘BC Vaccination Rates Drop Amid ‘Misinformation’ campaign. Mr. Woodward is typical of most media pundits in his assessment that I am “misinformed”. His failure to provide or demand any evidence of vaccine safety and effectiveness is not considered relevant.  
The National Post conducted a survey to elicit opinions on whether vaccinations ought to be mandatory, thereby denying a parent the right and responsibility to choose what is in the best interests of their child. Not surprisingly, given the bias in the media’s reporting of this complex topic, most Canadians support denying a parent the right to make this decision.
This event is similar to numerous other events over the years. Witness 9/11 and the invasions of Iraq and Afghanistan.  We are inundated with information that is purported to be true by well meaning people. Remember those weapons of mass destruction? Some kind of urgent action is needed we are told. There is no time to think. There is no time to discuss the matter. Anyone who does not respond as demanded is somehow irresponsible, selfish or delusional.
David Icke has made considerable effort over the years to explain how it is that we are so easily seduced into a reactive response. He describes the process as ‘Problem – Reaction – Solution”. A problem is manufactured. A reaction is elicited. And a solution is offered for us.  Witness the recent events: Measles Outbreak = Crisis – This is terrible and something must be done – Take away a parent’s right to choose the medical treatments for their healthy child.
We would be wise to be more discerning in how we are coerced into making reactive decisions rather than thoughtful and well-informed decisions. We ought to be especially sensitive to situations where we become emotionally hijacked and insist on an immediate solution without the benefit of thoughtful discourse.
These reactive actions undermine our capacity to use our gifts of intelligence and compassion. We all deserve better. The answer will not be to change the way media reports these issues. It will be our unwillingness to become so easily coerced and distracted from the real issues at hand.

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A Little Care is Great – Too Much is Toxic

This morning, I was scanning caregiving news online and came across an article titled “The Grandma Effect: A Little Caregiving Sharpens the Brain – A Lot Dulls It.”   It turns out that scientists in Australia have shown that grandmothers cari… Continue reading

The Wisdom of Caregivers: Part II – Our Power and Love

Recently, I wrote about the wisdom and knowledge of caregivers.  Families giving care sometimes feel that they are operating in a vacuum – that the only compassionate place is the home because societies in which we live are driven by an ethic of individualism, consumerism and the perpetual growth of a paycheck.  So, how can we nudge our neighbours, institutions and governments to value and support our caregiving life? How can we create communities that will ‘future-proof’ our vulnerable loved ones and ourselves?  How can we teach our fellow citizens to behave with compassion and be allies in ‘judging and acting fairly’?
AdamKahane, in his book “Power and Love” wrangles with society’s toughest challenges.  He writes about joining hands across divides to co-create solutions to difficult social problems.  He writes “In order to do that, we have to work with two distinct fundamental forces that are in tension: power and love.  Kahane defines power as “The drive of everything living to realize itself, with increasing intensity and extensity.”  So power in this sense is the drive to achieve one’s purpose, to get one’s job done, to grow.  Much of our consumer driven society functions on that operating system.  He defines LOVE as “the drive towards the unity of the separated.  So love in this sense is the drive to reconnect and make whole that which has become or appears fragmented.  

Kahane says we need a little love AND a little power if we want social change.  I believe that our caregiver advocacy movement is dominated by love and that we could all use a dose of power.  If we are dominated by love, governments are dominated by power.  They are so fragmented that for many, applying for assistance is more bother than it’s worth.  My years of applying for respite and homecare funding have led me to believe that the starting question for bureaucrats who design these social programmes must be, “How can we make this programme accountable?” rather than,  “How can we make this programme helpful?”

Listen to what Kahane says about balancing love and power to achieve social change:

People who can understand the concerns of others and mix those concerns with their own agenda have access to a power source denied to those who can push only their own interests.  In this fuller understanding, power is a verb meaning to give and take, to be reciprocal, to be influenced as well as to influence.  To be affected by another in relationship is as true a sign of power as the capacity to affect others. …. As you become more powerful, so do those in relationship with you.  As they become more powerful, so do you.  This is power understood as relational, as power ‘with’, not power ‘over’.  Deep change, Kahane maintains, calls for a balance of these two forces because systems based on just one of those forces alone will result in stagnation.  And this carries the risk of the overall failure to respond to the chaotic changes that are the natural fallout of human relationships. 

The impetus required to reinvent the most deeply embedded habits is called for when the results of ineffective systems are a great enough irritant to the majority, that a general consensus to throw in the towel ensues. 

This happened in Anchorage Alaska when Dr. Doug Eby and his colleagues became so frustrated with the poor outcomes of traditional western medicine that they invented an entirely new blueprint for delivering healthcare. 

The NUKA Model of Care was born out of the realization that the “owner/users”, as their patients are called, held a good deal of the power for achieving decent health outcomes.   Particularly in the case of chronic care,  it is often patients who decide whether or not to fill a prescription or to take a full course of medical treatment.  The NUKA model of care retained a traditional model of ICU care, because in that setting, patients need systems to take over.  But Dr. Eby describes the design of traditional health care delivery for chronic conditions as akin to throwing a stone at a target on the wall.  In the messy business of dealing with people, he says, it is not a stone you are throwing at the target, but a bird.  No matter how hard you throw that bird at the target, it still may veer off in another direction before it hits the wall.  Systems that are rooted in the respect for freedom, yet offer support for our failings or changed trajectories, will result in better outcomes.  Dr. Eby worked with aboriginal elders in Alaska to reinvent a healthcare system that balanced love with power.  NUKA’s operating system is designed to work within the messy realities of real life and real caregiving. 

Kahane’s ideas and the NUKA model of care combined with our knowledge and experience give us an inkling of how to begin thinking differently about crafting a future for ourselves and most importantly, our vulnerable loved ones.  What are the forces that have power over us and prevent us from reaching our goals?  One force is our own inclination to diminish the value of our needs.  Instead, we look at programme requirements and funding eligibility and stay awake nights trying to squeeze our family circumstances into those narrow parameters.  I remember years ago, filling out a form for home help.  An older, more experienced Mum was sitting beside me at the kitchen table and she asked, “how much are you asking for?”.  I replied, “Ten hours a week, that’s the maximum.”  “But that’s ridiculous,” said my friend.  “You need at least thirty hours a week. Write 30 hours.”  I began to realize that day that Nick’s needs were not something imaginary.  Certainly, I did not need to apologize for the manpower it required to keep him alive, well and happy.  And if government did not provide me with the help we really needed, well, I would look elsewhere.   I would begin to imagine what network centred care might look like for my family and how, together, we could invent solutions for future proofing Nicholas.

Here’s something new: our family (like many others) is using technology to share the care, wisdom and knowledge.  We use an online social network called Tyze, a kind of highly specialized version of Facebook.  Regular readers of my blog will know that I am a huge fan of Tyze – I have written often of the benefits of online care coordination and the capacity of technology to help families share the burden of care.   Let me tell you a bit about how we use Tyze in our family.  We began by inviting members of our family to the site, simply to keep them up to date on the health and daily life activities of Nick.  At that time, Nicholas’ nursing needs were very high.  We were running a home hospital and trying to ensure important messages got through to all his care staff was increasingly difficult and frustrating.  I would leave notes about medication changes or other critical directives in a bedside chart, on a white board above Nick’s bed and still they would be missed.  I began to think that perhaps I could use Tyze for caregivers, our doctor, social worker and any other professionals on an as-needed basis.  Now, we keep the family in touch with Nick’s news via emails and Facebook.  Tyze became, for us, a secure way to let everyone know about medical or rehab issues, to alert the team to things like skin breakdown and bowel protocol, and to keep a daily seizure record.  We are very fortunate that Nick’s GP agreed to participate in our Tyze site – he can check in anytime to see how Nick is doing, especially if there are fluctuating symptoms, which there often are.  We a Tyze site for my Mom’s care too.  In her case, we use it to coordinate the support she needs between members of our extended family.  If and when her needs increase, we’ll invite paid caregivers to her network. 
Technology is a gift that connects us to our past, our friends and our neighbourhoods.  I use a blog and a facebook page to advocate for families who give care to someone who is vulnerable. Our story-telling online is vital because it will, over time, shift opinions in the wider society about the value of giving and receiving care. The caregiving narrative in all its forms is the most fundamental tool in shifting attitudes about our knowledge and wisdom in wider society. 

I have never met another caregiver who did not know what they needed to thrive as a family.  We know that paid care together with the love and support of friends, family and neighbours is for us, the key to a good life.  This is a future we must build for everyone, including those with differing abilities.  We must balance our love with power.  We must ally with anyone who shares our vision for an inclusive society and must build a future where care is valued and shared.  Our future depends on it. 

My book, “The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving” (House of Anansi Press, 2014) is available now everywhere in Canada and for pre-order online in the US.  

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An Early Morning TV Interview About My Book

Yesterday morning, I got up really early and travelled to the studios of CanadaAM in Toronto.  Here’s the interview about the new paperback edition of my book, “The Four Walls of My Freedom: Lessons I’ve Learned from a Life of Caregiving” (House o… Continue reading

The Wisdom of Caregivers – Part 1

What exactly is the wisdom of caregivers?  The Oxford Dictionary defines wisdom as the quality of having knowledge, experience and good judgement.  Let’s start with knowledge.  What do caregivers know?  Well, we know our loved ones and they have taught us the skills required for achieving intimacy in loving relationships.  That knowledge is rare and valuable. We need to stop the clock in order to listen to our loved ones.  That different pace of observing each other closely and patiently is a skill we have honed and one that people in the Slow Movement aspire to attain.  The Slow Movement advocates a cultural shift toward slowing down the pace of daily life.  One proponent, describes the philosophy this way:

The only thing for certain is that everything changes. The rate of change increases. If you want to hang on you better speed up. That is the message of today. It could however be useful to remind everyone that our basic needs never change. The need to be seen and appreciated! It is the need to belong. The need for nearness and care, and for a little love! This is given only through slowness in human relations. In order to master changes, we have to recover slowness, reflection and togetherness. There we will find real renewal.

EvaFeder Kittay is a philosopher and someone whose work I admire.  
She is also the mother of Sesha, her daughter who is now 35 and has severe cognitive impairments. Eva writes that to be a good caregiver for someone like Sesha, one must become transparent.  She describes the wholehearted listening that Sesha commands and the delights that await anyone willing to suspend their ego and their busy agenda in order to commune in that humble and quiet way.  Eva told thisstory about an important moment of learning: 
“I had been with Sesha in Central Park and I was working on some walking exercises that the folks at Sesha’s early intervention programme had assigned.  I was working terribly hard trying to get Sesha to cooperate and do what I was supposed to get her to do.  I sat her down on her stroller and I sat on a park bench.  I realized that I was simply exhausted from the effort.  I thought, how on earth am I going to do this?  How can I possibly do this job?  When I looked down at Sesha and saw her little head pushed back against her stroller and moving first to one side and then to another, I couldn’t figure out what she was doing.  Until I traced what her eyes were fixed on.  She had spotted a leaf falling and she was following its descent.  I said, “Thank you for being my teacher, Sesha.  I see now. Not my way, YOUR way, slowly.”  After that, I fully gave myself over to Sesha.  That forged the bond.” 

This story is important because it underscores the beginning of an understanding and acceptance of a ‘new normal’ that is driven by love, vulnerability, patience, respect and resilience.  A quick scan of the media will reveal a hunger for this knowledge, because beside every advice page about spiritual growth and life satisfaction will be articles about exploding health and social care needs due to the numbers of people aging into disability and people with disabilities aging.  These demographic trends are unprecedented and the only group with first hand experience in coping is … us.  But we have been so busy giving care that we haven’t yet figured out all of the policy and business solutions to ensure a future good life for ourselves and our loved ones.  For that, we will need to forge partnerships and think creatively. 

As for technical knowledge, I wager that I am not the only caregiver online today who knows how to change a gastrostomy tube, empty a catheter bag or discreetly soothe an anxiety attack. A recent study published by the American Association for Retired Persons showed that more than half of family caregivers polled were performing complex nursing care on a daily basis.   More than two thirds were giving medications, including those delivered by injection or IV.  Thirty years ago, tube feeding would have been a nursing need requiring hospitalization.  Today, families are expected to roll this task into their day alongside walking the dog and fixing school lunches.

Each of us has a caregiving experience that is unique.  Our lives are often punctuated by the extremes of emotion and many of us describe our family life as a ‘roller coaster’, reeling between hope and despair, grief and joy.  The constant though, is love.  Individually and collectively, we embody resilience, compassion, generosity, hospitality and ingenuity.  We embody those qualities partly because of the care that we give, but also because we are constantly presenting our loved ones to the world as we see them – whole and beautiful, but with exceptional needs.  At the same time, we have to see our dependent loved ones as others see them, because if we didn’t, we wouldn’t be able to make those fine adjustments necessary to ensure their dignity remains intact.  Our knowledge and experience give us a crash course in becoming fully human.
Besides knowledge and experience, the final component of wisdom is the ability to judge and act fairly.  How can we galvanize our knowledge and experience to forge partnerships that will enable us to co-create innovative solutions to our loved ones’ future-building challenges?  How can we create communities that will future-proof ourselves and our dependent charges? How can we teach our fellow citizens to act fairly?

That will be the subject of my next blog post, so stay tuned!  But for today, know that we caregivers are rich in wisdom, knowledge, compassion, creativity and humanity.  If there is a ‘secret’ to happiness and what it means to be human, caregivers are likely to know it. That’s why it’s important to tell our stories and be known in wider society….. because we are all caregivers at some point in our lives.
“The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving” (House of Anansi Press, 2014) is available now from all Canadian booksellers and available for pre-order in the U.S. from online sites.

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Reading Old Family Photos – Did My Nana’s Sister Have a Disability?

My Nana, Christina Mary McLeod, was a strong woman.  I remember washing a grey, hooked rug with her at our family cottage on a Quebec lake.  She filled the old claw-footed bathtub with some warm and soapy water, then helped me roll up my trou… Continue reading

The Transition to Friendship

By Tina Dam


Last April I decided to stop being Cath’s Community Connector. This was not an easy decision but I was so glad to pass the role on to an amazing Community Connector named Ayria.

Like so many …

How Are The Children?

A number of life altering decisions are before us. These decisions are being made around boardroom and caucus tables of various government and non-government organizations around the world.  
The discussions are occurring in the White House of the US government, the halls of the Canadian Parliament Building, the offices of the National Energy Board, and various meeting rooms of environmental groups, citizen advocacy organizations and First Nations Councils.
Many will not describe the decisions as “life altering”. Most of the dialogue will be about financial implications and economic development. To frame the conversation in the language of “life altering” is a perspective many will resist.
The decisions I’m referring to are the multiple proposals for consideration including: the twinning of the Kinder Morgan Trans Mountain Pipeline, the Keystone XL Pipeline, the Northern Gateway Extension, the Athabasca Pipeline Twinning Project, among others. What each of these initiatives has in common is a significant expansion of the extraction of bitumen from the Alberta Tar Sands.
Proponents of the pipelines and tar sands extraction would have us believe these actions are the only reasonable actions given our dependence upon oil and oil products. Defenders of the Keystone XL pipeline argue that not building the pipeline will not reduce world-wide carbon emissions because someone else will built a pipeline and the carbon will be released eventually. The idea of leaving the bitumen in the ground is not considered a viable option.
There are all kinds of economic arguments that make pipeline development the right choice. And if economics were the only criteria for success, the decision would be an easy one. However, economics is only one consideration, and I would argue is the least important consideration.  If a hierarchy of needs were established similar to Maslow’s hierarchy of needs, life would always come before money.
We are beyond speculation on the effects of carbon on global warming and climate change. There is increasing evidence that our carbon-based economy is eroding the very livability of the planet. Elizabeth Kolbert, author of the powerful book, The Sixth Extinction, asserts that we are witnessing a wide-scale dying off of species comparable to five earlier extinction events.
The culprit behind this extinction, however, is not an asteroid but rather a single species: human beings. In countless ways, we are rendering the Earth uninhabitable to many of our fellow Earth-dwellers.
Kolbert notes that “It is estimated that one-third of all reef-building corals, a third of all freshwater mollusks, a third of sharks and rays, a quarter of all mammals, a fifth of all reptiles, and a sixth of all birds are headed toward oblivion.”
We need to use one of our greatest gifts – our intelligence, to figure out how to live in peace with our fellow creatures. The violence that humans have done to the planet will not heal without a change in direction. Countless species have already died or are doomed.
There is a Chinese saying that states: “Unless we change our direction, we will end up where we are headed.” The direction we are headed is becoming increasingly dire, such that to say “yes” to any of the decisions before our governments and National Energy Board is akin to mass insanity.
The Maasai people of Africa, one of the most respected and intelligent tribes on the African continent, offer this daily greeting to each other: “How are the children?” The traditional response is, “The children are well.”
If we were being honest with each other we would need to respond with, “The children are in danger.”
Will we sit passively and allow our governments and corporations to make decisions that are not life sustaining? Will we continue to indulge in practices that encourage and support tar sands extraction? Will we do more of the same and expect a different outcome?
Ultimately the decision belongs to each and every one of us. The future of our children and grand children is in our hands.

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