Our Role in The Circle of Life: What's Your Title?

Over the holidays this year, I've been thinking a lot about birth, mortality and all that's in between. I guess you'd say, I've been pondering the circle of life and my role in it.

A week before Christmas, the wife of a lifelong friend gave birth to a perfectly beautiful baby girl. Jim and I visited our friends and I was lucky enough to cradle a newborn for the first time in many years. Standing, the shifting of my weight from side to side came naturally and tiny Sophie settled in my arms peacefully. I was filled with memories of my own babies and felt the awe of new life awaken in my bones. 

On Christmas Eve, my Mom turned 96. Born in 1921 in Montreal, she was a child of the depression and was scarred by losses during the war. Her birthday was a day of celebration and reminiscence. Everyone in our family gathered for Mom's special party except that is, for our daughter Natalie. 

Natalie and her partner arrived home late on Christmas Eve - they were delayed by the grave illness of Nat's partner's grandfather in the midwest. No one knew how long this dearly loved man's life would last, but everyone hoped that hospice at home would translate to at least a few weeks. It was not to be. Grandfather passed away just days after Christmas.

I'm a mother, a daughter, a caregiver and a friend. But it struck me over the holidays that we often describe ourselves in professional terms instead. Usually, I use words like 'consultant', 'advisor', 'coach' or 'writer'. But those professional descriptions don't matter in the grand scheme of things. What matters is understanding the limits and possibilities within our most vital relationships. And keeping love and life going is our greatest burden and our greatest reward.

A Stranger Asks, "So, Do You Work?"

A stranger asks, "What do you do?".  They really mean, 'do you WORK?'.  When you reply that you care for a loved one, they look past your shoulder, scanning the room for an escape route. At the grocery store, someone you used to know walks by, averting their eyes.  Conversations with people apart from other caregivers can be difficult and sometimes hurtful.


I am a caregiver who has never had a 'proper' job since Nicholas was born twenty-five years ago. I have certain sensitivities and sometimes, I take a chilly greeting personally. During the years when Nicholas was constantly in hospital and often in crisis, I would say this to the doctors: "I really need you to be nice to me. I mean it." I did not know any other way to express the fact that a small slight, a critical gaze, or an unkind word could shatter what bit of resilience I had left to get through the day. 

 


Eva Kittay recognises this chink in the armor of caregivers because she is one herself (when she is not teaching moral philosophy at SUNY Stony Brook). Eva describes the phenomenon of the 'transparent self' of the caregiver - “a self through whom the needs of another are discerned, a self that, when it looks to gauge its own needs, sees first the needs of another”. Kittay argues that the moral requirements of a dependency relationship make the transparent self indispensable. This labor of love is simultaneously responsive to the needs of others, exhibiting care - it cultivates intimacies and trust between humans. Both care and concern contribute to the sustainability and connectedness fundamental in dependency relationships, but it leaves the caregiver vulnerable. Prolonged transparency of the self can lead to clinical depression at the worst and the absence of empowerment to act on one's own behalf at the least.

My clumsy response to being too transparent for too long was to beg those around to 'be nice to me'.

Looking a caregiver straight in the eye with real interest (not sympathy) is tonic to the caregiver soul. Asking her (or his) opinion about a shared experience, even if it's what she thinks about the color of the sky -  demonstrates a respect for that part of the person which is not a caregiver. 

  

"What do you do?" is a question that most caregivers despise.  Somehow caring for a person you love doesn't stack up alongside occupations like doctor, lawyer or even office manager. New mothers on maternity leave from high powered jobs very often complain that work comrades avoid them or don't include them in professional banter. For long-term caregivers, respectful, authentic and engaging conversation is hard to come by. So, if you happen to overhear someone say "I just need you to be nice to me", make eye contact, elicit a few opinions and share a personal reflection. And by all means, don't ask "What do you do?  Do you work?"

Why Do I Care, Why Do You Care?

I just love when I receive messages from strangers who share my interest in exploring ideas about caregiving.  Last evening, the little red number  '1' appeared above the message symbol on my Facebook page (also called The Caregivers' Living Room).  A student wanted to know if I would share her survey for caregivers of seniors - this survey represented her senior project, or perhaps the basis of her master's thesis.  "Of course!" I answered immediately.  But first, I completed the survey myself.

Well designed surveys manage to poke around in your heart of hearts and get to the truth of what you really feel about a given issue.  They do this by asking the same key questions, phrased a little differently, over and over again.  So it was with this survey.  'What drives you to give care?' was the essential query.  As I answered questions such as, "Would you feel guilty if you didn't provide care?" and "Would your friends and family think worse of you if you did not provide care?", I began to reflect on my own true motivations as a caregiver.

I care for my family members because I love them.  Because I love them, I want them to be comfortable, safe and happy.  In seeking to help them be comfortable, I experience intimacy.  When I experience intimacy, I feel most fully human.

The American author Willa Cather (1873-1947) wrote, “Religion is different from everything else; because in religion seeking is finding.”  I think this is true of caring for others, as well.  

If you care for a senior and would like to complete the survey, click HERE.