The Perfect Caregiver

Let me tell you about a perfect caregiver I know.  Her name is Glenna and she looks after my Mom for a couple of hours on Wednesdays and Saturdays.  Mom's home care agencies are littered with support workers she's thrown out - my mother resents needing help and quite often, she takes it out on her unsuspecting caregivers, especially if they are patronising.  But Glenna is different.  She's quiet, but smart.  Sensitive, but direct.  Respectful, but not fawning.  When Glenna is home, you wouldn't know it, except that the laundry is done, the kitchen is tidy, there is a sandwich and fruit plate prepared in the fridge and Mom is dressed with her hair styled.

Eva Kittay, the philosopher and disability Mom, describes the perfect caregiver as a 'transparent self':

A transparent self does not allow its own needs or vision of the good to cloud its
perception of another’s needs, and so offers no resistance to its response to
another (except, of course, when such a response would be in direct violation of a
well considered and deeply held moral belief or conception of the good). The
perception of and response to another’s needs are neither blocked by nor refracted
through our own needs and desires. A transparent self attempts to intuit and
respond to the other’s own sense or understanding of their own good, and does so
for the other’s own sake. (2007, 53)

Glenna is transparent when she gives care.  For example, a couple of days ago, I visited Mom and when I arrived, Glenna was there along with my sister Karen.  We all converged on Mom because we knew that she didn't feel well and might have pneumonia.  I watched as Glenna knelt at Mom's chair-side and asked quietly, 'would you like a dressing gown?  It's a bit chilly in here."  She didn't ask about putting a glass of ice water on the table, she just did it.  Glenna would never, ever 'show off' her caregiving skills or her friendship with Mom to us, the daughters.  She knelt beside Mom to establish eye contact and be heard without disturbing conversation in the room (Mom is slightly hard of hearing).  Glenna never draws attention to Mom's frailty or needs - her assistance makes Mom seem more able and less dependent than she is.

Glenna is a perfect caregiver and we are very, very grateful to have her in Mom's life.  But as I say in my book, The Four Walls of My Freedom, "The extent to which a carer has to become "transparent" in order to provide good care, acutely listening and watching for signs of need or distress, cannot and should not be sustained without reward and rest."

Transparent caregivers are perfect caregivers, but they are fragile.  We all need to support the integrity, strength and health of the perfect caregivers in our lives - our own future wellbeing as care receivers depends on it.

I am Fine if Nick is Fine

My last blog post was about saying 'I'm fine' when I am not fine.  That got me thinking about the state of being 'not fine'.  For me and for most other caregivers I know personally, that state is most acutely felt when our charge is ill, injured or somehow away from our loving arms.

So, the real refrain is "I am fine if Nicholas is fine.  I am fine if Mum is fine".  My son Nicholas has endured multiple surgeries and chronic pain.  He and I have had many times when we were most certainly not fine.  And I remember saying to the doctors "I want to tell something important about what I need as Nick's mother.  I need you to be nice to me."  I don't recall any doctor understanding the importance of my request.  In order to be a good caregiver, I need exceptional kindness shown to me.  At a time of crisis, I could not cope with the normal brief and sometimes brusque conversation style.  I needed time and compassion from those whom I invested with the trust to achieve wellness and stability in my beloved son.

Eva Feder Kittay writes about caregivers as being 'the transparent self' - when we spend hours on end observing our charge, scanning for signs of disease progression, seeking to feel what they feel in order to imagine what might bring comfort.... we become transparent to others and especially to ourselves.   This condition is necessary to giving good care.  But it leads to our sense of wellness and being fine (or not) being absolutely connected to the wellness of our charge.

When I was researching Amartya Sen's capability approach and its application to the caregiving experience for my book, I came across an observation about Indian women who suffered from extreme poverty.  Apparently, Sen was told by a colleague at the Delhi School of Economics that 'The Indian woman does not have an understanding of herself as an individual, she has concepts only of the family'.   I found that observation fascinating, especially in the context of our society which is so driven by consumerism and individualism.   I think most of us would agree that we have a concept of ourselves as individuals, but I'll bet money that all of us judge if we are 'fine' or not by how well our charge is doing.  Some days, we are more transparent than others.