Thursday, 16 October 2014

Managing Chaos: Lessons for Caregivers From Military Special Forces

The world of illness, disability and caregiving is peppered with terminology from the battleground.  We 'battle' cancer.  We 'fight' to get our loved ones the services they need.  We don't invite friends over because our houses look like 'a bomb went off'.  When the going gets very tough for caregivers, it certainly feels like we're operating in a war zone.

The other day, I was listening to a banker talking about the volatility of financial markets.  She used a word I hadn't heard before - VUCA.  It's a military term used by forces in Iraq and Afghanistan and it stands for 'Volatile, Uncertain, Complex and Ambiguous'.  "Wow", I thought, "there must be lessons here for caregivers!"
So, I googled VUCA and found a website about using military lessons learned for corporate leadership.  And my intuition didn't steer me wrong - these lessons really are absolutely relevant to caregivers.  Because our world is always volatile, uncertain, complex and ambiguous.

  • Always retain a clear vision against which judgements can be made, with agility to flex and respond appropriately to rapidly unfolding situations.

  • Provide clear direction and consistent messaging against a backdrop of continually shifting priorities, supported with the use of new virtual modes of communication where necessary.
  • Anticipate risks but don’t invest too much time in long-term strategic plans. Don’t automatically rely on past solutions and instead place increased value on new, temporary solutions, in response to such an unpredictable climate.
  • Think big picture. Make decisions based as much on intuition as analysis.
  • Capitalise on complexity. If your talent management strategy is working, then you should be confident that you have the right people in the right place. This will enable you to rapidly break down any challenge into bite size pieces and trust in the specialist expertise and judgement of those around you.
  • Be curious. Uncertain times bring opportunities for bold moves. Seize the chance to innovate.
  • Encourage networks rather than hierarchies – as we reach new levels of interconnection and interdependency collaboration yields more than competition.
  • Leverage diversity – as our networks of stakeholders increase in complexity and size, be sure to draw on the multiple points of view and experience they offer. Doing so will help you expect the unexpected.
  • Never lose focus on employee engagement (here, think of the doctors and home nursing team, if you have one - even your extended family).  Provide strategic direction, whilst allowing people the freedom they need to innovate new processes, products and services.
  • Get used to being uncomfortable. Resist the temptation to cling on to outdated, inadequate processes and behaviours. Take leaps of faith and enjoy the adventure.
Each of these elements of VUCA has great resonance for caregivers.  Some are easier than others to implement, but many of them tell us what we already know (but forget in a crisis or in a moment of self-doubt).  'Get used to being uncomfortable' is a lesson all caregivers must learn and re-learn every day.  But taken together, all these elements of VUCA give us reassurance that being uncomfortable is A-OK and just a natural way of being when dealing with adversity. 

My book, 'The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving' (House of Anansi Press), is available now from all major booksellers in the USA and Canada. 

Monday, 13 October 2014

Thanksgiving 2014

On Thursday, October 9th, Natalie arrived home from university to spend Thanksgiving Weekend in Canada with us.  

We drove to my husband's family cottage on a lake north of Montreal, Quebec.

Where we were greeted by a full moon!

In the morning, we got up and lit a fire in the wood stove.

Then went for a walk in the woods.

It was cold outside, but cosy in the living room of the cottage.

The autumn colours were beautiful.

And we watched the bluejays at the feeder outside the window.

We paddled over to the Thomson family cottage across the lake (Jim and I met at the lake and these are our grandparents' places!).  My sister Karen was staying at the Thomsons' and we all hoped our Mom, Grandma, would be well enough to come up for a Thanksgiving visit and dinner.

Grandma wasn't feeling well, so she couldn't come that day.  But we skyped and had a lovely chat.  She arrived the next day, but we had to return to Ottawa, so we missed our visit with her.  I'm glad she got to spend the day up north with Karen and her family.

We had our turkey with all the trimmings.

And the next morning, with mist was on the lake, we packed the car to head home to Ottawa and Nicholas.

We had a picnic at Nick's place and a really wonderful visit.  Then we dropped Natalie off at the airport, kissing her goodbye till her next visit home at Christmas.

Tonight, we had another Thanksgiving dinner at home with Nicholas and his helper/friend Tom.  Nick and I made a rum cake for dessert - Nick's favourite! 
We skyped Grandma again and told her about the cake.  "Forget the cake and just pass the rum!" she said!
Tonight, I said grace at the table.  "Thank you, Lord, for the food on our table.  But thank you most of all for the love in our family.  Thank you for the love today and every day."  We weren't together all at once this Thanksgiving, but we came together in the ways that we could.  And we felt very grateful all the same.

Friday, 10 October 2014



Anger that my son has pain. Anger that my husband is away on business.  Anger that the caregiver didn’t show up for my Mom.  Anger that the milk is sour in the fridge. Anger that the doctor smirked when I asked a question.  Anger that an old colleague’s career is flying high.  Anger that the dog rolled in something awful. Anger that I have to do the night shift tonight alone. Anger anger anger.

Anger is an emotion that all primary caregivers know too well.  Witnessing the unfairness of our loved ones suffering, combined with a sense of unwanted labour forced upon us sometimes swirls into a toxic stew of seething resentment.

Righteous anger that spurs us on to defend the interests of our vulnerable loved one is energizing – it is a positive force.  But bitterness is negative.  It sucks the life out of our best selves and it feeds on inertia.  It’s hard to move forward constructively when you feel consumed by resentment.

The primary caregiver may have a network of close family and friends around her (or him), but there will be some days that the leadership role takes its toll.  An angry, resentful attitude doesn’t attract friends.  Bitterness sends potentially helpful well-wishers scurrying back to the safety of their peaceful homes.  It isolates.

So, what can be done with these feelings when they stalk us through the day and night?  For years, I held my anger inside when I felt it, and I certainly don’t recommend that as a strategy.  Looking back, I wonder how I got through many of the toughest times.  They say hindsight is 20/20 and I’ve combed through the memories of my life to find strategies that worked sometimes for me, even though I may not have realized it at the time. 

In my book, The Four Walls of My Freedom, I wrote about how I thought of our family life as a swim marathon across a large body of open water.  Jim was in the safety boat – he needed to be there, because to survive, we couldn’t have everyone in the water.  During storms, I cried for him to let me give up the marathon and let me into the boat, or to have him jump in with me.  But the lucid part of me knew that we needed Jim’s salary and that personally, I needed to have one person in the family who grounded us with a sense of order.  “Everything will be all right”, he said.  “You are a great mother.” 

I’m no longer swimming the marathon.  Nicholas is healthy and happy at the moment and I have retired from nursing him.  Others do that now.  My Mom is doing OK and our entire family pitches in daily to ensure she feels safe and loved.

What did I learn about swimming a marathon of caregiving through unsettled waters?  I learned that there is an end to the marathon, even though it is beyond the horizon – it exists.  Every caregiving experience has a beginning, a middle, and an end.  I know that changing your swimming  stroke is a strategy that works for the long haul.  Floating on your back to rest and look at the stars means you stay in the water, gathering energy to swim hard the next day.  Getting through a long stretch means switching from butterfly to side-stroke.  It’s old-fashioned, but it’s what our mothers taught us and it’s energy efficient.  I know that staying in the water with lots of people on the boat passing snacks and throwing a life-belt are the difference between drowning and mastery of the waters.  And sometimes, in long stretches of calm water, it’s essential to trade places with a strong swimmer on the boat.  It was hard to trust that others could swim or that they would stay the course if I looked away, but it was a necessary lesson.  I learned that it’s always possible to jump back in and swim strongly after a rest and a change of perspective, especially when swimming against the current.

The biggest lesson about anger a life of caregiving has taught me is that resentful anger is not my friend.  Treating it like a friend only hurt me more, every time.  Changing my stroke, changing my perspective… those are the strategies that worked for me to banish bitterness.

My book, The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving (House of Anansi Press, 2014) is available from all major booksellers in Canada and the USA.

Wednesday, 8 October 2014

My Guest Post on LOVE THAT MAX: 5 Secrets of Special Needs Parent Happiness

This is my guest post on the wonderful blog "LOVE THAT MAX" the inspiring and informative blog by Ellen Seidman.  I am so grateful to Ellen for hosting my family story of caregiving.


5 secrets of special needs parent happiness

This guest post is from Donna Thomson, author of the new book The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving. Donna is mom to Nicholas, who has cerebral palsy; they live in Ottawa, Canada. Donna began her career as an actor, director and teacher. In 1988, when Nicholas was born, Donna began a second career as a disability activist, author and consultant. Nick is 25 now and, Donna says, "He finds meaning and purpose by writing his hockey blog. He is active on Twitter and Facebook. His favorite activity is managing an online fantasy hockey pool."

Nick is looking to get a job, she continues, and recently created and delivered a resume to his local community ice-hockey arena; he's hoping to be hired for a part-time volunteer job. "This particular dream is still a work in progress, but he's determined to succeed," says Donna. She is married to James Wright, a retired career diplomat, and is also mom to Natalie.

I was alone with the doctor in the hospital playroom when she gave me the news about our six month-old baby son. "Never be normal" are the words I recall. I also remember “generalized cerebral atrophy." Pea brain, I wondered?  "Esophageal reflux," she continued, listing his challenges as her eyes welled up. "Nothing to keep food down where it belongs. Common in cerebral palsy. Pain similar to heart attack." I stared unblinkingly at the blue stripes on her blouse. I looked down and something red caught my eye. Blood was oozing from the edge of my thumbnail where I had bitten it.  

"Now I will be able to feed my child," I thought. Nick had never managed to suck or swallow efficiently, and his efforts to feed were punctuated with gasps and coughs. He spat up most of what he did manage to ingest. Suddenly, I was convinced that if I could learn to correct my feeding technique, all would be well.  "I will become an expert," I thought. "I will apply myself to becoming a great mother, and my baby will grow into someone perfectly perfect."

Passing the ward desk, I noticed the nurses half turned, whispering, their pitying eyes fixed on us. I scooped up Nicholas, deposited him into a stroller and paraded up and down the hospital halls, back straight, eyes fixed ahead.But I was not all right. I wrote in our baby book: "February 22-25, 1989: Nick admitted to hospital. Cat scan, PH probe and digestive barium x-rays. All abnormal…trying to absorb this terrible news."

Over the twenty-six years of our son Nicholas’s life, I have learned lessons about what it takes to thrive against all odds. These are five building blocks of happiness I’ve learned along our rocky path:

Accept the unacceptable. 

From the moment of Nicholas's diagnosis to the instant we realized that it was time for a wheelchair, we have been forced to accept the unacceptable. When it became apparent that Nicholas would never express himself verbally, a conversation with another Mom helped me reframe my thinking. "We don’t do our own dry cleaning or make our own soap," she said, "so what's the matter with a computer helping Nick to speak?" After that, assistive devices became our friends, not our enemies. Nick has taught me to trade my definition of success for his.

Embrace interdependence. 

Striving to be independent and self-reliant is a strong message in our society. And it's a toxic one: An inability to achieve independence is seen as a moral failure of personhood and if we believe that, we don't see our own frailty or that of everyone we love, especially our children. We are meant to be inter-dependent. Nick's network of support includes our family, his paid helpers, his friends and his doctors.  Together, we all help Nick to live a good life on his terms. We rely on each other as any winning team does.

Design your life intentionally. 

A wise friend told me recently that our most vital challenge in contemporary family life is to be intentional. Intentional about asking our children what a good day looks like for them, intentional about asking for what we need, even intentional about being happy instead of miserable. At Nick's neighborhood school, the other children were friendly, but brief in their conversations. One day, when I was volunteering in the classroom, I noticed an impulsive boy with a fiery temper was transformed into a caring, model student when paired with Nick. This young lad became a daily after-school visitor and frequent dinner guest. I learned how to engineer social opportunities for Nicholas by watching for signs that others needed something Nick and our family had to offer.

Know that a good life is possible. 

Everyone has different idea of what they need to be happy. In our family, we began by asking ourselves, "Given our realities, what is a life that we value and how can we create it?" For me, this meant learning to be mindful and grateful at home, but to begin planning for a retirement from giving full-time care to our son. Living in the moment gave me joy, but planning my own future gave me hope.

Stop time with special time. 

When Nicholas was young, he did a kind of non-directive communication therapy called "Special Time." During the hour, the therapist did not speak herself, except to reflect back to Nick what she saw him do and what it might mean. It was an hour of intense intimacy and heightened listening. Special Time had many communication benefits for Nicholas, but it had benefits for me, too. I learned the value of stopping time in order to listen intently and exclusively to those I love. Even ten minutes a day of special time with a son, daughter or spouse enriches family life.

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Monday, 6 October 2014

The Worth of Vulnerability

Marilynne Robinson is a great American novelist and essayist who mines contemporary society for meaning.  Her themes are expansive and biblical in their proportions.  This what she said in a New York Times Magazine interview recently:

“People,” Robinson said, pausing before she defined that familiar word in original terms: “Brilliant creatures, who at a very high rate, predictably, are incomprehensible to each other. If what people want is to be formally recognised in society, to have status, to have loving relationships, houseplants that don’t die, the failure rate is phenomenal. . . . Excellent people, well-meaning people, their lives do not yield what they hoped. You know? This doesn’t diminish, at all, the fact that their dignity is intact. But their grief . . .”

I've been thinking a lot about grief lately, especially the grief of being inadequate to meet the needs of our loved ones.  When I can't soothe Nick's pain or when I hear my Mom (who lives in a different city) tell me over the phone that she hasn't eaten breakfast because her caregiver never arrived.  And I've been thinking about if and how my son and my mother are formally recognized in society - are they at all?  Robinson's mind seems to have wandered in the same direction as mine.  Here's what she said about human worth: 

The idea is that there is an intrinsic worth in a human being. Abuse or neglect of a human being is not the destruction of worth but certainly the denial of it. Worth. We’re always trying to anchor meaning in experience. But without the concept of worth, there’s no concept of meaning. I cannot make a dollar worth a dollar; I have to trust that it is worth a dollar. I can’t make a human being worthy of my respect; I have to assume that he is worthy of my respect. Which I think is so much of the importance of the Genesis narrative. We are given each other in trust. I think people are much too wonderful to be alive briefly and gone. 

We are given each other in trust - that is something I feel, absolutely.  I've given a lot of thought to the notion of human worth, especially that of people who require care.  What about someone like Nicholas who will never be employable and will always need total care?  I love him, but how can I publicly defend his worth?

Many parents will identify with me when I talk about Nicholas’ contribution to the quality of my life, especially to my spiritual wellbeing. I am a better person for loving him and caring for him. But certainly I cannot say that because I have cared for my son, and consequently increased capacities for selflessness in myself by virtue of attending to his needs, that either of us would wish to claim that as his contribution to life in general.  As the special needs Dad and theologian David A. Pailin said,  “Those who are looking for a reason to justify caring have not understood that love is a self-justifying and all-sufficient ground for certain types of behaviour. Those who remain puzzled by love (and even cynical about references to it) should therefore consider whether the contributory worth notion of value has blinded them to what is good in itself.”  

Some activists in the disability movement defend the worth of those with cognitive disabilities by pointing to the “contribution of being.” But that stance is rooted in what positive effects might be experienced by an able-bodied person while spending time with someone who seems unresponsive. “I love spending time with my aunt who has advanced Alzheimer’s disease because we just sit together. I have a busy job and she helps to slow me down” is one story I heard to back up this theory.   But, what if this aunt had no visitors who enjoyed sitting with her? Does this woman’s worth diminish the longer she lives without her capacity for reason? What if all her relatives were killed in an accident and there was no one left who remembered this elderly woman before the onset of her disease? In the case of the severest forms of disability, it may be too difficult to imagine an individual ever having capacity. How do we rate the worth of such souls? The theological anthropologist Hans Reinders expands on the idea of received love as the scorecard for worthiness. “The gift that profoundly disabled human beings have received is the gift of being, which is derived from the freedom of judgement. No entrance tickets are needed, no exams have to be passed. ...The gift of being is not an abstraction; it is the gift of being what you are.”

When I was researching my book and casting around for a theory of human worth that would include my son, I had a conversation with the distinguished professor and academic, Melanie Walker.  I told Melanie that the best theory I'd found so far was a religious one, but I worried that it wouldn't be inclusive for anyone who didn't believe.  "Well, you'll have to find a theory that's not religious", she said, shrugging.  "Try reading Eva Kittay."

Eva Kittay is a philosopher, but she's also a disability Mom.  Kittay's daughter Sesha has a severe cognitive impairment.  Kittay has a wonderful theory of human worth that includes her own daughter, Nicholas and my Mom.  "We are all some mother's child", she maintains. "Our dignity, I want to argue now, is bound both by our capacity to care for one another and in our being cared for by someone who herself is worthy of care."  This idea is perfectly personified by the mother and newborn baby.  This relationship of dignified, perfect care and pure love, is at the root of equality in human dignity and civil society itself.

Recently on Facebook, I saw that Eva Kittay had started an innovative project to persuade young academics from varied gender, economic and racial backgrounds into graduate work in philosophy. Her  inclusive project is called PIKSI.  With women and even people with disabilities entering graduate careers in philosophy, perhaps we'll have more inclusive theories of human worth that resonate with me and other families like mine. 

Thursday, 2 October 2014

A Dream Come True: How One Community is Supporting its Citizens with Disabilities from Cradle to Grave

Until very recently, I have never met a parent of a child with disabilities who didn’t worry about the future.  “What will happen to my child after I die?  Where will my child live? Who will love my child and keep him safe?”  These are the anxieties that make restful sleep impossible for ageing parents.

Recently, I spent the weekend at a family conference outside of Brantford, Ontario.  Children with disabilities and their parents sat with me around the campfire and told me their stories.  One young man relaxed in his wheelchair while younger children sang songs or lounged on the lap of a parent.  All the children at this gathering suffer from an intractable form of epilepsy called Dravet Syndrome.

Ankie Werdekker is the mother of Gavin, an engaging pre-teen who was born with this genetic anomaly.   Ankie is a Brantford native and the conference organizer.  She's also the Secretary of the Canadian Association, ''.  She told me about ‘Peace Haven’, a disability support initiative founded by members of her church, The Free Reformed ChurchAssociation.

“What will happen to Gavin when he grows up?” I enquired.  Ankie told me that Gavin attends a church school and often spends his ‘holidays’ (aka respite for Ankie and her husband) at Peace Haven.  “When the time comes for Gavin to move away from our family home,” Ankie said, “We hope and expect that there will be a permanent place for him at Peace Haven.” 

The respite programme at Peace Haven doesn’t only serve children and adults with Dravet Syndrome – all are welcome from the special needs church family, including those with San Filipo Syndrome, Down Syndrome and Fetal Alcohol Syndrome.   A wide range of supports can be offered in family homes, as well.  Service is flexible and based on individual need.

After my morning keynote address, I asked if anyone could take me to see what this local church community had built for its member families supporting children with disabilities.  Ankie and her husband Jack introduced me to Margaret Heemskerk, the Director of Peace Haven.  Margaret is a fireball who offered immediately to show me the two small supportive homes she and her team operate.  A short drive from the conference led us to a modern and leafy neighborhood with two stone and brick bungalows side by side – “These are our two Peace Haven homes”, Margaret said proudly.   I was shepherded in to a cozy and beautifully decorated living room flooded with light.  In the adjoining kitchen, a resident was making soup with her helper.  Down the hall, I was invited to peek in three distinctively different bedrooms – each filled with colours and artwork reflecting the character and tastes of its resident.   “Here is the bedroom of one young resident who is medically complex and is non-speaking.  His adapted bath adjoins his bedroom.”  I was struck that another resident had much less visible needs.  She needed some support with banking and getting to and from her part-time job.  The management of Peace Haven is committed to creating a home that meets of their residents, no matter how high or how subtle.

I asked Margaret if I could tour the twin home next door.  “Sure!” she said, “Come on in!”  In the living room of the second Peace Haven home, I had the opportunity to chat with a resident.  Sandra Spysma smiled as she described her daily routine.  A talented musician, choral singer and crafter, Sandra has many opportunities to share her interests within her church community and beyond.  Sandra’s mother manages the house operations and keeps an eye on her vulnerable daughter as well as the home’s other two residents. 

As Margaret and I drove back toward the conference through the rolling hills of Brant County, I mused about how it might be possible to replicate this cradle to grave community support system for vulnerable children and their families.  How, for example, did the home’s operations remain immune from institutionalization?  Margaret explained that three residents is the maximum allowed before provincial government authorities take a more active role in oversight, something the church community wanted to avoid.  The question of family trust in the operations of the homes seemed moot – folks in this small community are friends and members of the same church.  Parents of residents support the daily activities and upkeep of the homes.  There are no secrets.

For Peace Haven, the church community behaves like a supportive extended family.  Ongoing funding is ensured by a collective commitment to the project.  Fund raising is complemented by an ethic of volunteerism, so paid staff in the home are used to being assisted by church members/friends.

Today on Facebook my respected friend, fellow disability Mom and executive activist, Sue Swenson, wrote this:
 Here's to a day when a loving mother has options other than 'a group home,' options that provide gentle teaching and positive support, and that those options strengthen her connection to her son even if he lives elsewhere, and they do not make her feel that she is abandoning her beloved son, or abdicating her responsibilities, but rather the options allow her to feel that she is deserving of having her own life even as he is deserving of having his. Here's to that day.
Here is also to that day when parents who are desperately seeking solutions to how to get through the day and the night find answers beyond what they learn in animal husbandry or corrections, and when our communities are rich enough for someone else to know and care what that family is up against, and that there are resources to help them escape the expectation that they 'take care of it' without help. Here is to manageable struggle, and ordinary people who come together to help when the struggle becomes unmanageable. Here's to a civilization that is actually civilized. Here's to that day.
Here's to the day when people who work in human services have the tools and resources they need to provide services that are humane and that support families without first needing to require the families to be sacrificed. Here's to the day when we recognize that human service workers are human, too, and are not built to stand by and watch disaster happen to others. May their empathy be supported. Here's to that day.

To Sue, I would respond, ‘Here’s to the day that we all have the future certainty of a Peace Haven’ in our lives. Now that we’ve seen it, we can build it, but we cannot do it alone.  It takes a village, so let’s begin to imagine our neighbours, friends and local businesses as co-creators of our children’s secure future.   Here’s to that day.   Bottom of Form

My book, The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving (House of Anansi Press) is available now from all major booksellers in Canada and the USA.

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