"So, Do You Work?"

Submitted by Donna Thomson on December 18, 2013 - 5:54pm
It's a question most caregivers despise

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?"

Thanks for sharing!

Donna, thanks for being vulnerable and sharing your story.

I think one of the hardest, if not THE hardest job is to be a full-time provider of care. I worked for Christian Horizons, supporting adults with special needs for four years. The house I worked in was with older adults, who were all very dependent. That said, they are beautiful people who taught me so much about the world! It is just an emotionally draining process to go through the joys, sorrows,... the unpredictability of each day.

You deserve a medal- you really do!

I think two major things cause people to ask, "what do you do?" (ie. where do you work?):

1. We value professionalism far more than we should

2. People don't know what else to ask; we have become socially lazy/nervous

Some of the most valuable things in life are not done or received professionally, and yet they are essential to our existence. Most care in Canada is non-professional (somehting like 80% or more). Also, we have lost a sense of curiosity about others. There are so many better questions we could be asking. A friend of mine asks those he meets, "what do you like to do for fun?" This sort of question allows us to truly come to know each other.

Thanks again for your thoughts and keep doing what you're doing- it's appreciated :)

Thank you for your thoughtful

Thank you for your thoughtful reflections, Rachel.  I am very familiar with Christian Horizons - it's a wonderful organization.  I agree with both your points that we value professional pursuits more than we should.  And that goes directly against current trends in social change and in the arts where amateurs have become professionals (like developing apps, crowd sourcing ideas, etc.).  Yet what is the language we use to engage with each other that will elicit the kind of conversation we crave?  This is certainly a great subject for a PhD thesis or a book!  


I second Rachel's sentiment.  Donna you are a champ as are all caregivers.  It is a draining and rewarding job.  One that does not get the fan fare it deserves, nor the understand, support and resources.

How has this experience changed you?  Changed how you see others?

This question of how to be curious about other people and what questions to frame this curiousity in to elicit a positive dialogue is one I have been wrestling with for a while.  Our society is one where we are not used to strangers or people we do not know well being genuinely curious about us.  We are used to the surface dialogues: weather, job ect.  How do we dig deeper?  What questions do we ask?  I have found that people sometimes put up walls when I try to engage with them beyond these shallow conversations.

Hi Derek, thank you for

Hi Derek, thank you for responding to my blog post - I believe you and Rachel have prompted me to think about a blog post (at the least) on the subject of conversing with people including caregivers in a way that is not centered on professional pursuits.  "So, what are your interests?" might be one good opener. The thing about "What do you do?" is that it infers that we CHOOSE to do whatever it is we answer.  Often people fall into careers that have nothing to do with their real interests.  I have been turning over in mind recently the tension between "Who am I? Who do I want to be? and Who Must I Be?"  These are complicated questions for full-time caregivers, especially in circumstances where the 'burden' of care is really more than one person can or should handle.  You asked how my experience has changed me.  I believe that it has made me humble - I used to think that the power of my love and my will could CURE.  Now I know that isn't true.  I'm not angry about the limits of my influence and I think lots of people learn this lesson with age and experience.  And because of my humility, I am much less judgemental of others that I used to be.  I believe that I am more empathetic and because my son is non-speaking, I am a very good listener.  These are some of the changes that my experience of caregiving has given me. I'm lucky!  Thank you for asking, Derek.