By Sarah Jane
While lying in the bath the other night, listening to a podcast of an interview with the very excellent Atul Gawande, I realized that I’m guilty of avoidance. Gawande is the author of “Being Mortal.”
I haven't read it yet. As soon as I get my mitts on it, I will. He talks about how modern medicine is focused on treatment and cure. He argues that people, especially medical professionals, tend to avoid involving those who are dying in discussions about what they want.
But not everything is fixable or curable. It struck me that Alzheimer's disease is one of these things and that I, too, avoid discussions that acknowledge the reality of dementia.
In situations where a patient’s condition is life-threatening and no longer treatable, Gawande argues that end-of-life conversations are vitally important.
He suggests three key questions:
- What is your understanding of your condition?
- What fears do you have for the future?
- What goals do you have for the time remaining?
This Saturday with Mum, things started off quite well. This is often the case. Mum is surprised and delighted to see me, despite the fact that it’s a Saturday and that’s invariably the day we spend time together. She’s pleased to be going out for lunch, consumes a plate of new potatoes, black pudding and sweet corn with great enthusiasm, and then goes into a slow decline. As the time comes for her to return to the rest home, she becomes increasingly sad and depressed.
“What do you think I should do?” Mum asks me this question often, and I never know quite how to answer.
“About what particular aspect?” I ask, playing for time and casting round desperately for distractions.
“My life,” says Mum, throwing the whole thing wide open, “what’s left of it.”
So rather tentatively, I ask Gawande’s first question. “Mum,” I say, “can I ask you—what’s your understanding of your condition?”
Her answer comes with surprising speed. “I have short-term memory problems. I suppose it’s a kind of dementia. That’s a horrible word.” Then she looks at me expectantly.
Clearly, in that moment at least, Mum has no problem with insight.
“So, how does that affect things?” I ask.
“It means I can't live independently. I have to live in some sort of hostel, a supported environment of some kind,” she replies.
“Like a rest home?”
“Yes,” says Mum, “a rest home. And the problem is, I’m just not used to it. I've always been a competent person. I never thought this would happen to me.”
I agree and she talks for a while about the problems of rest home life—the boredom, the aimlessness, and the sudden and ongoing lack of independence and autonomy.
After a while, I try the next Gawande question. I put it to Mum, exactly as described in the podcast. “What fears do you have for the future?”
For the second time, the question seems so perfect that the answer is there almost before I’ve even finished asking.
“I fear being dependent on my children.”
We spend the next half hour talking about that. About Mum’s childhood when her aged grandmother lived with her family and the tension that caused. About being a burden and her fear that her family is seeing her out of a sense of duty rather than because they genuinely want to.
It all comes out in a rush. Mum says that all her life she’s been the one who helped others and now… this. Being the one who has to be helped; being the old person who has no valuable role.
I hardly say a word. Then she stops. “Thank you for talking about that,” says Mum. “It’s a relief to actually be able to say it.”
Raising some important questions, then listening to Mum’s responses? It didn't seem much to ask. And of all the things my mother is facing? I had no clue that being a burden was her biggest fear.
I anticipate her answer to the third question is going to be pretty interesting...