Wednesday, 16 July 2014

Carepartner Wednesday--The Domain of Autonomy


It was a desperate time. My husband was in the cardiac intensive care unit of a Toronto hospital, fighting for his life. His heart was large and floppy and not doing what hearts should do. He was on the list for a heart transplant, and various methods were being used to get him through until that happened.

I was working full time, spending a few hours with him at the hospital at night before taking the hour+ journey home. Life felt out of control. This was especially true for Bill, who couldn't even sit up in bed. There was no autonomy--no choice. Even his food was carefully chosen for him and measured, as he was only allowed a certain amount of fluid in a day.

In the midst of that madness, we invented a game. He was wearing an oxygen mask, and I would get a cup with ice chips and toss them one by one in the holes in the mask.  He would try to catch them. Between the ones that melted (they were chips, after all) and the ones that missed (I'm not a great shot) he only got a few, but we were amusing ourselves, and it seemed to be a way to lighten a horrible situation. We made the choice turn pain into a game.

Until the nurse yelled at me.

She saw me leaving for more ice chips, and lit into me. Those counted in his total liquid intake,  didn't I know? How many had I given him?  Didn't I realise this was all scientifically measured and I was putting him at risk?

I came back to the room and smiled at him, changing the topic of conversation. I left shortly after, and cried all the way home. Besides being humiliated, my one tiny choice and our silly little game were crushed and destroyed. I felt destroyed, too.

It's part of who we are to desire autonomy. Choice. Freedom. Our country was built on those principles, and we, its citizens, hold them dear.

"Simply put, to be autonomous is to be one’s own person … to be respected for one’s ability to decide for oneself, control one’s life and absorb the costs and benefits of one’s own choices." 1

Autonomy is what makes us people, separate from those around us.

It is especially important in community living, such as long term care or retirement. When people are living together, there are rules, and usually they aren't decided by the people involved. When to get up, when to eat, what to have--the list goes on. When someone enters long term care, they can feel like all their autonomy is lost. They are told when meals occur, and although there are probably choices, if they have a craving for something special, it's probably not on the menu. There is a certain time for a shower, and a time to go to bed. A person can feel like all choice is gone. Some caregivers feel they must do everything for the person they are caring for, further destroying autonomy.

So what do we do?

Respect looks for ways to restore autonomy. Here are a few scenarios.

"You want to sleep in? You can, and we will bring you breakfast when you are up."
"You want something special to eat? How about we buy the ingredients and make it together tomorrow?"
"When would you like to have your shower? If you're not up to it now, maybe we can try again in an hour."

The bottom line is respect. If I'm coming from a place of respect, I will look for ways to give you as much choice as possible. I will ask your opinion. I will value it when you give it.

And I won't crush your ice chips.

1. http://edenalt.org/wordpress/wp-content/uploads/2009/06/EdenWell-BeingWhitePaperv5.pdf

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