Friday, 18 April 2014

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 longterm caregivers use their experience to teach, to inspire and sometimes, to create a career.  Susan Beayni is the Coordinator of Family Supports at Partners for Planning in Toronto, Canada - she taps into the wisdom she's gained from her own caregiving to advise and support others.

Susan Beayni is the mother of two young women - Rebecca (31) and Nicole (28).  Rebecca lives in her own apartment that adjoins the family home where Susan and her husband Simon reside.  Susan and Simon tell their story of nurturing a good life for Rebecca in a marvellous video titled DANCE IN THE SHADOW (viewing the video is free on the Partners for Planning site, you just have to register first).

Even as a girl growing up in Ontario, Susan felt a connection and a calling to Africa.  In 1979, she travelled to Nigeria as a newly graduated teacher and there, she met her husband to be.  Simon Beayni hailed from Lebanon and when the couple married, they left Nigeria and returned to Simon's birthplace.  Lebanon in 1980 was under siege and when Susan fell pregnant with Rebecca a couple of years later, she boarded a British container ship carrying evacuees to safety in Cyprus.  Eight months pregnant, Susan made it eventually back to Canada in time to deliver Rebecca in Toronto.

Not wishing to be separated from Simon, Susan flew back to still war-torn Lebanon with her new baby and slowly, it became clear that Rebecca had disabilities.  Rebecca had suffered the effects of a virus contracted early in Susan's pregnancy.  "In the midst of so much hatred, our baby girl was our peaceful anchor", Susan says.  "She changes the whole fabric of the environment.  She calms people down - she makes people joyful and grateful.  Her fragility and vulnerability are her greatest gifts.  She gives others the permission to be vulnerable, too."

I asked Susan about her own professional life and aspirations as Rebecca's mother, over time.  At first a full-time mother ministering to her two children's daily needs, Susan tried supply teaching when her girls were teenagers.  But, working proved difficult with Rebecca's many medical appointments and unpredictable illnesses.  Then, as luck would have it, an opportunity to use her knowledge and skills presented itself.  A professional committee was being formed at Holland Bloorview Kids' Rehabilitation Hospital to assist families transition from children's services to adults'.  Susan was hired on a five year contract to gather information about families' needs and to develop a curriculum and resources.  When that contract ended, Susan reflected on what form her future contributions might take.  "I just want to be with families," was her conclusion.

When Susan met Jeff Dobbin, the Executive Director of Partners for Planning (formerly PLAN Toronto), she knew that she had found a match.  Jeff's talent was in applying the business approach to assisting families build a safe and secure future for their son or daughter with disabilities.  But he needed someone with the skills, knowledge and wisdom to support families in building support networks as well as offering them information and compassion.  Susan was hired.

Now, Susan draws her own strength from her exploration of indigenous peoples and their traditions of acceptance and inclusion.  She says, "From the time Rebecca was born, I worried that she would die.  So, I finally came to rest in the unknowingness - in the unpredictability of our life course.  I embrace the African idea of Ubuntu that Nelson Mandela described so well."

Susan Beayni's life as a caregiver has led her from a dream of Africa, to mothering a young woman with severe disabilities to inspires her many friends and neighbours to be fully human, to eventually finding a role in teaching and supporting other families.  Susan's life is rich and full of love and meaning.  Her story nudges us all to readjust our lens of hope and expectation in life - it is not impossible to embrace the 'unknowingness' we all experience every day.

NOTE:  Partners for Planning is a fantastic resource for families supporting a loved one with disabilities.  I urge you to check it out! To read more about Rebecca Beayni and her extraordinary life and community contributions, check out her WEBSITE.

Wednesday, 9 April 2014

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 caring for grandchildren one day a week scored excellent results on cognitive tests.  But another group of grannies who cared for their grandchildren five days per week had much lower scores for cognition, memory and mood.  It seems that as we age, high levels of caregiving are actually bad for our health.

That got me thinking.  Legions of middle aged North Americans are engaged in caring for very elderly parents, many who suffer from Alzheimer's or other forms of dementia.  Lots of parents of adult children with disabilities are struggling to cope with the effects of their own ageing, as they continue to give high levels of care 24/7 to their dependent offspring.

So, what's a mother (or father) to do?  Well, one place to start is with forging an agreement about the ethics of caregiving and ageing.  How can we begin to think about what is fair to expect of older people caring for grandchildren, their very elderly parents or their adult children with disabilities?  The Australian study cited above gives us evidence that too much caregiving in older adults is damaging to cognitive function.  In my book, "The Four Walls of My Freedom: Lessons I've Learned From a Lifetime of Caregiving", I argue that we should expect from people what nature intended - that is, much higher levels of caregiving in the childbearing years and easing off later on.  Grandmothers who have raised their own children should not be coerced into giving levels of care that would be expected of younger parents.  I call this the 'natural trajectory of care' and I argue that programs and services should be accessible to caregivers based on this principle.  A mother of an adult child with severe disabilities should expect to have a 'retirement' from her caregiving responsibilities.  There should be a public recognition that it is improper for her at age 80, to change her 55 year old son's soiled briefs.

Of course, there are many exceptions to every rule and there will be older adults who choose to give high levels of care.  They will be happy, fully functioning and thriving in that role.  But if this Australian study has a broad, international application, we can assume that most older people want some caregiving responsibilities, but they want to take a smaller role.  It's only natural.

The public expectation that families will 'take care of their own no matter what' should be recognised as dangerous to the health and wellbeing of all concerned.  Care is better when it is shared.  Caregivers are better when they are appreciated and supported.  And certainly, no one should have 'so many children that they don't know what to do."

The Four Walls of My Freedom: Lessons I've Learned From a Lifetime of Caregiving (The House of Anansi Press) is available now everywhere in Canada and for pre-order in the USA from online booksellers. 

Friday, 4 April 2014

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.  

Saturday, 29 March 2014

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 of Anansi Press, 2014).  Available everywhere in Canada now and for pre-order online in the USA.

Wednesday, 26 March 2014

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.

Friday, 14 March 2014

Trying to Be A Normal Mom - Crafting My Caregiver Exit Strategy

When Nicholas was very young, I decided that my task was to help him live his life in a way that approximated 'normal'.  For us, that meant finding ways for Nick and his sister to help with chores around the house when they were able.  Natalie swept the kitchen floor in a haphazard fashion, gripping the broom to keep it from falling on top of her.  I put a sponge in Nick's hand and helped him wipe his wheelchair tray after dinner.  Living according to a natural trajectory also meant encouraging independence, resilience, kindness and creativity in both our children.  I studied what other children Nick's age were doing and tried to help him do it, too.

It was only later that I began about applying that line of thinking to myself.  I was past middle age and still nursing Nick, helping him with every aspect of his daily living.  But what were other mothers my age doing?  My mind began to meander into the future.  What if I were 85 and still repositioning a 60 year old Nicholas every hour overnight?  What would become of us?

I made a decision to apply the same line of thinking I'd used as a guidepost in Nicholas' life to my own.  I knew that I would be putting Nicholas at risk if I didn't create an exit strategy for us both - an exit strategy that allowed me to be his Mom, but not his nurse into my old age and Nick's middle age.

I asked myself that key question, "What would Nicholas be doing if he was an able-bodied young man?"  The answer that came to me was, he would be working, he would be living on his own, seeing friends during his spare time and he would be indulging his passion for sports.  I knew that Nicholas wanted his own apartment, ideally sharing with good friends who are also his caregivers.  But, with Nick's complex care needs, I knew that this was a housing solution that was impossible, given the current funding arrangements in our region together as well as his requirement for multiple caregivers, including backup.  So, I began to research supported housing options in our neighbourhood that could provide nursing and a the promise of a good life for someone as young as Nick.  For our family, the stars aligned and we found a wonderful solution.  Nicholas now lives in his self-described 'man cave', with carers who are his age and share his interests.  He blogs about sports and has a twitter account (@wright_nick) with many followers.  These pursuits constitute his 'job'.

Our family still sees Nick more than another family might visit a young working son of 25.  But we each call or visit to reach our comfort level with one another's company.  When it feels right, we give each other space.  If Nick is ill, I'm there to sleep on a sofa near his room.

I know other parents of adult children with disabilities whose guiding idea is "I will look after my son or daughter in our home until we die."  I know other families, too, that would like an independent life for their child with disabilities, but haven't the resources to create it.  But, every life is better with a plan and every plan begins with an idea.  What is your future plan idea?

Tuesday, 11 March 2014

A Dutch Village - Prison or Paradise?

There's a story about Hogewey, a village in The Netherlands that's gone viral on social media recently.  It's a closed village (ie. it's got walls around it and there's an air lock system to get in and out).  The residents are people with advanced dementia or Alzheimer's and their carers.  In this village, shops have goods but no cashiers.  Nurses have no uniforms and accessibility is the norm.  It is an environment designed to provide maximum freedom as well as support to those made vulnerable by their cognitive impairments.

When I first read this article, I thought of the 60's BBC cult TV show "The Prisoner" - a creepy tale of a sinister walled village somewhere in the UK ruled by an invisible dictatorial force.  By all accounts, folks in this Dutch village have reduced levels of anxiety as well as more discernible joy and meaning in their lives.  Comments on Facebook were almost uniformly positive, proclaiming this model to be an innovative, compassionate and effective alternative to traditional nursing homes.  It may be all those things, but it's not normal.  I can't decide if it's human or inhuman.

This story got me thinking about the value of segregated settings - are they EVER a good thing?  When our son Nick was small, I was a tireless advocate of inclusion for children with disabilities at school.  That is, until we moved to the UK and decided to put Nick in a special training institute for a type of therapy called Conductive Education.  To me, that decision was akin to sending Nick to ballet or hockey school.  Nicholas was there to learn specific skills that were not available in the mainstream and the education on offer was intensive.  After two years of that training, we realised that Nicholas had accomplished all that he was able and was ready to move back into the mainstream.  All to say that I am not against segregated settings per say, but I'm wary of them.

But the Dutch village is a long way from being an environment to teach specialised skills.  It is a rarefied version of life itself, somehow akin to 'The Truman Show'.  And yet.  My mother does not suffer from Alzheimer's, but if she did, wouldn't I choose a closed village for her as an alternative to a nursing home?  I believe I would, but only if there was no third alternative.  The question that persists in my mind, is "can't we accommodate our loved ones with advanced forms of dementia within society?  Do we really need to construct an alternate and separate reality for them?"  Jean Vanier understands the need to reconcile the needs of vulnerable persons with safety and inclusion.  His "L'Arche" model leverages the assets of compassionate citizens seeking meaning in their lives who wish to live with, not apart from, people with high needs, including sometimes challenging behaviours.  But doesn't any inclusive solution by its nature limit the freedoms of people with cognitive impairments?  The Dutch village seems to offer freedom of safe movement within city walls, that is certain.

I am glad that people around the world are developing new ways of caring for our most vulnerable citizens and I think compassionate models are all worth a try.  For my family, I hope that we will live together, without walls or air-locked entrances.  I hope we can find a way to do that.