Friday, 26 October 2018

What the Heck is Happening? I'm a Caregiver?


Caring for a dependent loved one is a chaotic business. There isn't much time for reflection, let alone laundry and grocery shopping. I'm always thinking, "If we can figure out a framework for planning our days, then maybe life would be a little easier." Some of those frameworks I've talked about before are Amartya Sen's Capability Approach (I used this approach in my book, The Four Walls of My Freedom to analyze what kind of help was helpful in our family) and the F-Words of Disability (a wellbeing framework designed for children with disabilities, but it works for anyone). 

Today I want to introduce an idea that I borrowed from the community development work of Cormac Russell and John McKnight at Nurture Development and the ABCD Institute, respectively. McKnight and Russell talk a lot about enabling marginalized communities to escape cycles of dependency by systematically supporting the sharing and talents and gifts of people in order to address their own challenges within neighbourhoods. The Asset Based Community Development movement developed the 'To, For, With, By' framework as a way of understanding how social services work in ways that are often oppressive. But today, I want to borrow this framework and think about it another way. 

As caregivers, we often do things 'TO' our loved one, especially in the case of cognitive impairment. Sometimes we dress our loved ones even when they don't want to get dressed or we guide them into a bath and shampoo their hair. Certainly in our family, I've given medications and tube feeds while our son didn't miss a beat watching his favourite show on TV. There are many things we need to do TO our loved ones and they need us to do to them. Sometimes these actions are negotiated - our son told me that he doesn't want to be consulted on his medications - he just wants whomever is helping him to get on with doing it 'invisibly'. 

And caregivers spend a lot of time doing things FOR our loved ones. "Here, let me do that for you": that's what we say when we see someone making an effort to reach a magazine or to put on a sock. It's an empathic reaction to assist when asked to help in one way or another. 

Then there are the times we perform chores or engage in activities WITH our loved ones. I loved to arrange flowers with my Mom and I love cooking with our son. I smile when I think of being absorbed in an activity that we enjoy together - these are the delicious moments of caring for someone who is loved. 

The hardest nut to crack though, is BY. In my caring life, what are the activities that I've helped my Mom and our son to do by themselves? How have I managed to help them achieve independence? Can I be doing this more and have I slipped too easily into doing TO and FOR instead of WITH AND BY? I'm going to think this over and seek opportunities to balance these aspects of caring. And I'm going to ask our son if he is happy with the balance. I'll report back on that conversation. 
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