She was diagnosed a few months later. Living apart proved a recipe for guilt and anxiety. Just getting her to the dentist was a triumph of organisational skill. I would ring and tell her, “Put your coat on, you have to go to the dentist.” Then, I’d call two minutes later: “Is your coat on?.” I redirected her post to my house after I realised fraudsters were targeting her with fake competitions.
After the microwave-potato incident, I looked around a few care homes. Because of her diagnosis, Mum was only allowed into nursing homes specially equipped for dementia patients. It was a sobering experience. Those homes aren’t for the faint-hearted; most of the residents had far more advanced dementia than Mum, and I knew simply sitting in the common area would frighten her.
And that’s how I made the decision for her to move in with me. I’d developed something of an attachment to solitude. I’ll admit, I was nervous Mum might interrupt my routine; work, swimming, walking. Although I was one of four, I ended up doing most of the caring. This did create resentments, on all sides. It’s well-known that daughters tend to take on more of the caring burden than sons. As an unmarried daughter without children of my own, I was practically a sitting duck.
The first year or so was relatively easy. I gave Mum ironing and other housework, so she always felt useful. Friends invited us for dinner. I took her to the opera and cinema, and even a garden party at Buckingham Palace. The only losers were our two cats, who’d always lived alone and didn’t appreciate suddenly having a furry companion. They would confront each other in the hall with terrible hissing matches.
But I always knew our little story wouldn’t have a happy ending. Her mind slowly deteriorated. She’d be hanging up washing, then suddenly she’d have no idea how to use a peg. For years she’d managed to put tights on by herself; one morning, she tried pulling them on like socks. A visiting friend brought his two small dogs; when they ran behind the sofa, Mum forgot they were there. The dogs emerged, and Mum’s eyes would light up all over again. At one point, she thought I was her mother.
Interspersed, of course, were moments of joy. We’d sing war songs from the war, like Run Rabbit Run. Sometimes, when I was working at night, she’d sit next to me and place her hand on mine. I was busy, and couldn’t always give her the attention she wanted – something I still feel guilty about.
A doctor once told me that Alzheimer’s “makes you more of what you already are – if your mother was hiding a mean streak, it will come out”. I thought, “Gosh, what if Mum was hiding a mean streak?” But the disease just enhanced her cheeriness. The last lucid thing she said to me was, “What a lovely face you’ve got, sweetie pie,” as she stroked my cheeks.
I gradually lost the mother I loved, but that wasn’t even the hardest part. Far worse was the never-ending bureaucracy. By the end I was in charge of a six-person rota of visiting carers. They were paid by the council, but I still had to organise their tax and national insurance. I remember sobbing in front of the computer at 4am one night, simply unable to understand what Her Majesty’s Revenue & Customs was demanding.
I was invited to write a weekly blog for Saga magazine. It became an outlet for my frustration. I received endless correspondence from readers in the same position, a deeply cathartic experience.
After five years of living with Mum, one day a carer told me she didn’t want her morning shift anymore, because Mum “can be nasty”. I started to cry, and couldn’t stop. I’d hit the brick wall. I put Mum into a home. She died six months later, fairly suddenly. In her final hours, I held and stroked her, and told her she was beautiful.
My advice to other carers is to learn how to forgive yourself – and learn it very quickly. Dwell on the happy moments, not the times you fell short. I’m grateful to Mum for introducing me into her world. It was a world that moved at a slower pace; a world in which every flower was to be gloried at, each neat hedge to be approved of, every passer-by to be smiled at, every cat stroked. Had she not moved in, I might never have discovered it.
As told to Luke Mintz
Keeping Mum: Caring for Someone with Dementia (Hay House, 2011) by Marianne Talbot is available from Amazon.
