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.
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