Happy with dementia Alan Crawford
Alan Crawford has learnt to be content, despite suffering from dementia for three years
About three years ago, I was diagnosed with dementia. I was beginning to forget a lot. So I went to my GP, who referred me to the hospital in North London where I live.
I did a lot of tests, and in February 2017 I was diagnosed with Alzheimer’s, the most common form of dementia. I was just 74.
I remember afterwards, sitting with my wife Mary and thinking how odd it all was. I didn’t feel ill. I didn’t feel as if I ‘had’ anything.
At that time, I knew very little about dementia. All I could think of was disability and lolling heads, as seen on television. How pleased and surprised I am to find how different things can be.
A few months later, my GP noticed my hands trembling, and referred me to the National Hospital for Neurology and Neurosurgery in Bloomsbury. The consultant asked, ‘How is your sense of smell?’ I said I hadn’t smelt anything much since I was about 30. ‘Ah,’ he said, ‘that is interesting.’
My diagnosis was changed from Alzheimer’s to dementia with Lewy bodies. This occurs when tiny clumps of protein develop inside brain cells, causing them to malfunction or die. So this particular dementia is a mixture: I get confused and forget a lot (Alzheimer’s) and I shake and feel unsteady on my feet (Parkinson’s).
I can remember the social awkwardness of having a serious disease that isn’t obvious in the early stages. People don’t know how to react.
Sometimes they congratulate you on ‘doing so well’, when you are just sliding imperceptibly downhill. Sometimes they are sceptical: ‘Oh, I forget things too. You are just getting old.’ Which is true.
In summer 2018, I began to panic. I was behaving oddly. I made plans to clear all my files out of my office, as if my life was almost over. The doctors at Queen Square diagnosed anxiety, quite common
in people with Lewy bodies. The professor of neuropsychiatry prescribed an antidepressant called Duloxetine and told me to come back in a few months and tell her how I was feeling.
When I came back, I said I felt much better. She is not a little girl, but she jumped up and clapped her hands as if she were, crying, ‘Wonderful!’
Since then, I have slowly come to feel I am standing in a sunlit landscape of happiness: at peace; a bit muddled, but happy – an attitude nobly emulated by Terry Pratchett and Barbara Windsor, who died in December, aged 83.
I have not always been happy. I got married in 1968 and my wife Jane and I had two children, Sarah and Kate – now talented parents and professional women. Those were happy years.
In 1978, Jane was diagnosed with breast cancer. She died in 1985, aged 38. By the early 1990s, I was living by myself in north London, working as a freelance writer, and in therapy. Those were not happy years.
But now, much of that has changed. Jane is a constant and a kindly presence in our lives. I live with my new wife, Mary, near Alexandra Park. I used to walk there in the afternoon. Now I can’t manage it by myself, so either Sarah or Kate – both of whom live near the park – comes with me. It is a blessing.
And my life is happy, even hilarious. I talk to myself – I think I have always done this, but recently it’s got a bit more loony.
I was brought up a Catholic, and the other day I woke up with the phrase ‘ Dominus tecum’ in my head – what the priest used to say in Catholic churches when giving Communion. Only it had got muddled up in my head with ‘Cadbury’s take ’em and they cover them with chocolate.’
My hands shake, so I can’t write clearly and my typing is rubbish. So I have bought some software called Dragon. I say what I want into a microphone and it appears on the screen without my touching the keyboard.
I am in the early stages of dementia, and there is worse to come. I laugh a lot, but I don’t think I will have the last laugh.
Mary and I are an odd couple. I am posh, with a voice that Mary says sounds like Pathé News. Mary is the child of a happy, Catholic, working-class family in Limerick. She moved to London and married a man who was violent and abusive, and she stayed with him for 18 years. Their three children, Carley, Darren and Lyndsey, are all flourishing. We met in 2008 and married in 2011.
The landscape in which I live is not a drug-induced wonderland, though the medication has a lot to do with it. It has roots.
It grows out of the care of my GP, my therapist and the doctors and nurses at Queen Square; out of the love and support of my friends and family; and, above all, out of the deep, strange and abiding love of the girl from Limerick, who has so changed my life.
‘I have slowly come to feel I am standing in a sunlit landscape of happiness’