Since November 2009Author Article: Kate Thompson
April 27th, 2010 by Chloe
When I read and loved Kate Thompson’s latest book The O’Hara Affair, I didn’t realise that some of the storyline was closer to home for Kate than you would have thought. Kate has had to care for her own mother-in-law who has dementia, as Dervla has to within the book, and Kate has kindly written us a piece about the experience to share with all of you. Enjoy, and our thanks go to Kate for taking the time to write this for us.
“Recently I saw that the role of carer was up for discussion on a television chat show. Having covered for my mother-in-law’s carer a couple of years ago while she took a three-week break, I was keen to watch and find out how the experience of other people might mirror my own. I hoped that at least one of the three interviewees appearing on the panel might concede that they had found themselves fearful and panicky, suffering from feelings of isolation and persecution, or full of anger and self loathing. For I confess that those three weeks looking after my demented mother-in-law were the most difficult of my life.
I had thought that time spent in her country cottage, miles away from the city centre where we live, would be a good thing. I would bring my laptop, get some work done on the novel I was writing. I calculated that a little light housework, a little cooking, a little time set aside to read the newspaper or help my mother-in-law with the crossword might add up to three or four hours a day.
I couldn’t have been more wrong. While I lived with my mother-in-law, I was at her beck and call twenty-four/seven.
The first inkling that life as a carer might not be as rose-tinted as the cottage in which I was living came when I brought her breakfast in bed on the first morning. Not only did she have no idea who I was, she treated me as though I were a servant. When the cereal I served was not to her satisfaction, she threw the spoon at me. When I suggested she might like a wash, she took it as a personal affront. She never said please, she never said thank-you. It was like living with a stranger – an autocratic, unpleasant one at that.
I became fearful – locking my bedroom door at night because she wandered and I found it unsettling. I would lie there, listening to her moving around, on tenterhooks that she might fall, yet powerless to make her stay in bed. I discovered that the easiest way to survive was – like Epictetus – to adopt the course of least resistance and embrace my slave-like status. However, when she had an accident one night and I was obliged to change not only her bed linen, but her mattress, there was a clash of Titans. It took every determined ounce of my persuasive powers to get her into the bath she insisted she did not need.
During my three weeks as Dobby the House Elf I got no work done on my novel. I lost weight, my self esteem plummeted, I felt as though I were living in a mad house – which, in effect, I was. The woman for whom I had once harboured only feelings of love, admiration and respect, became a dementor. Sometimes I found myself hating her.
But the people on the television show I watched were saint-like in their devotion to their charges. They bore no ill-will or resentment; they harboured no feelings of hatred or anger; they spoke only of the compassion they felt, and their willingness to sacrifice all for their loved one. They made me feel worse than inadequate: they made me feel like a failure.
I did my best. I fed my mother-in-law nutritious meals; I kept her warm and clean; I made sure she was entertained, whether by going through old photograph albums or settling her down in front of a favourite DVD. But – mea culpa - I could not love her. And that, to my mind, was the most grievous failure of all.”
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Thanks for this interesting and intimate post. I have personal experience with dementia as well and I know what a horrible disease it can be, not so much for the person suffering from it, but mostly for the people who live with that person. It’s incredible how people how people with dementia change and I know how it feels to feel sorry for that person and yet be angry at them as they’re impossible to live with or care for. Living with a demeted grandmother really took a toll on my family, but in the end things got so bad (trust me, you don’t want to hear the details) that she had to be put in a home, there was just no other choice as we were away at work or school and could not care for her 24/7 (literally). It turns out that this was the solution both for my family and for her as she now has the care and help she needs. But yes, dementia is a horrible, horrible disease …