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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