When I was a medical student, our teachers asked us asked to have a discussion about whether we were responsible for caring for our parents in their old age. To my shock, fully half of those present said they wouldn’t care for their parents when they were older. Some didn’t see why they should; others said their parents wouldn’t want it.
I couldn’t believe it. It was so clear to me that it was part of the deal to care for those who had cared for you.
But when the time came, and my mother needed care, I couldn’t do it either.
She moved to a house in our village because she’d been feeling ‘lost’. I thought ‘lost’ meant lonely. She was still independent at this stage. We’d made preparations for when she became more dependent. We’d had a garage attached to our home converted into a ‘granny flat’. But the experience of her living as close as next door persuaded me that I couldn’t have her living any nearer.
After she arrived in our village, it emerged that she wasn’t as independent as I thought. Important things were quietly not happening. I found vital letters from solicitors in abandoned piles of papers, unanswered. She was writing cheques to charities without any recollection of her existing bank standing orders. When we cooked together she’d touch raw meat and wipe her hands on a tea towel.
And living in a village was more difficult to adapt to than she’d expected. She missed being in town, being able to be out in the streets among people. When her dementia specialist told her she had to stop driving that was awful. She wanted to be in town but couldn’t understand the bus timetable to get her there. Though other elderly ladies in the village welcomed her beautifully she kept forgetting to go to their meetings. She couldn’t remember what they told her of themselves so it was very hard to make new friends. She was more lonely than before she moved. Dementia is so cruel, the way it isolates people, because they can’t remember that others have visited.
I tried so hard to make up for all this. To remind her of meetings. To give her lifts to the shops. To make up for the deficiencies in life the dementia caused.
But the worst thing from my perspective was the way routine things became emergencies because she was unable to plan ahead. One day I came home at the end of a long day at work, kids in tow, longing for a cup of tea. Mum was waiting for us in our porch. ‘I’ve run out of the dog’s painkillers. Please can you take me to the vet to get some more?’ Inside I exploded. ‘I was in town yesterday’, I protested. ‘I could have got them then if you’d told me you were running out. No, I’m not going out again. You’ll just have to wait’.
It wasn’t fair on the dog. And it wasn’t fair on her. Making her feel the consequences of her disorganisation wouldn’t work in this case. Unlike a child who has to learn responsibility, she couldn’t learn. I knew that but I still snapped. And I knew this was only the beginning. Things would get much worse. As I imagined the future with her living with us in our home, I knew it would turn me into a mean, impatient fiend.
I had to admit I couldn’t do it.
So she moved back to the town she’d lived in before. Initially to sheltered accommodation, and then when she wasn’t feeding herself, to residential care. We’d found the best place we could: it was small, kind, quirky. She could help in the garden, feed the cat, play the piano. She hated it to start with; I guess walking through a lounge of vacant-faced residents to get to her room was a horrible daily reminder of where she was headed. But it was the best we could do.
I still wish I could have discussed it with her properly and explained that this was not how we had hoped it would be. But her perception of her illness was so patchy. She wouldn’t have understood. She would have argued that she was still as capable as she had been five years earlier. I couldn’t say to her, ‘Mum, if you’d lived with us I’d have ended up being so mean to you because I wouldn’t have coped. You’re better off with me and my sisters and your old friends visiting every week than living with me being exhausted and ratty with you the whole time. At least we can have happy times taking you out.’
And we did. Every other week I drove an hour to see her and we went together to Anglesey Abbey, walked round the gardens and had lunch in the National Trust teashop. Every time it was the same; that made her feel safe. The garden changed through the seasons and we both delighted in it in the moment. She didn’t need to remember being there before; the trees were beautiful today. Two weeks before she died we were there, enjoying the autumn colours and laughing at the antics of my dog. Such a happy memory.
Another elderly lady I know has dementia too. And she’s looked after continuously at home by a rota of four people. Each person works two weeks on, two weeks off, either all day or all night. That’s sustainable (though financially unattainable for the rest of us!). One person with other dependents and another job cannot care for someone with severe dementia all the time, even if they are family. My inner expectation that I could was simply unreasonable.
But part of me still wishes it hadn’t been. Still I question – could I have done it? Still I wish I could have given her the continuous loving care she lavished on me when I was little. Dear Mum.