The idea of personal choice is not something that we think of every day, but it’s a little like fresh air – try living without it. As the needs of a loved one escalate, opportunities for caregivers to exercise personal choice diminish. Of course, the effects of disability or aging negatively affect peoples’ ability to choose. My mother and my son both get hopping mad when can’t do what they want for one reason or another. And when that happens, I feel badly. I find myself trying to make it happen for them… whether it’s a hair appointment on the spur of the moment for my Mom or tickets to the hockey finals for Nicholas. “Of course, it’s no trouble, of course I’ll do it!”
Eva Kittay is a moral philosopher, writer and special needs mother. She writes about the caregiver’s ‘transparent self’. Eva says that to be a really good caregiver, you have to make yourself invisible. The caregiver’s intent listening, observing and caring all enable a loved one to be the best they can be. And yet, she says, we must be alert to our own disappearing self. Choosing is a big part of expressing the self. If we lose ourselves completely in giving care to those we love, we will become depressed, angry and even ill.
Sometimes, we simply cannot choose our tasks. We can’t even choose when we perform those tasks. It was like that with washing Nick’s tube feeding supplies. Medication syringes and stomach tubes would no sooner be used than they would be needed again. My day was a constant revisiting of soapy water and vinegar for rinsing. Most days, the thought clanging around in my head was “I would rather chip rocks on a chain gang than wash another *&^% tube!” I never shied away from work in general – I simply wanted to choose my task, any task.
Later, when I was writing my book, I began to think about how people living with infirmity and their families could have a life that they valued. I began to look at human happiness and the ingredients for it. Sabina Alkire co-wrote the National Happiness Index for Bhutan, the only country in the world with a National Happiness Index. She is an extraordinary person who has made a huge contribution to the understanding of poverty alleviation. I was fortunate to meet Sabina and I brazenly asked her to create a happiness index for our family. She did and it became a chapter in the book. The one regret that I have about our happiness index is that I somehow neglected to include a category titled “Ability to act in a spontaneous manner”. Spontaneity is the mother of all choices. “Let’s go shopping” or “Surprise! I just scored tickets for tonight’s game” are phrases that never occur in the household of a caregiver. Every outing and action requires complicated planning and often, costly modes of transportation. No wonder families suffer from ‘social exclusion’! It’s just easier to stay home.
Sometimes, we need to find our choices in unlikely places. “I choose to look out the window and not at the television” or “I choose to wear something from my jewellery box every day, no matter what” are examples of small choices that lift the spirits. Breaking daily routines that can be broken is powerful medicine for the transparent caregiver.