Monday, 26 March 2012

My Mum and Alzheimer's

Off to Zambia on a previous trip c1995
Saturday marked two years to the day since mum died from Alzheimer's Disease. We don't really know how long she had it; mum had always been a little bit disorganised and forgetful. After my dad died in '99 she decided to fulfil a long cherished ambition of teaching in Africa and went off to Zambia where she had got a job as a maths teacher. At the airport she said to my sister and I, 'Oh there may be a few things to put away in the house, you'll sort that, won't you?' When we went round there we discovered she had not even taken the laundry out of the dirty linen basket or emptied the fridge. It was as if she had popped down the shops for an hour. Maybe this was an early sign, but at the time we just assumed it was mum being mum. 'Bloody typical,' we said as we defrosted the freezer.

She stayed in Africa for three years, living in a small village in the bush in southern Zambia. When my daughter and I went to visit I could see she had found her spiritual home, she loved it. But then strange things started to happen. She would wander off into the bush and no-one knew where she was. She wouldn't always turn up for class. She got malaria twice. Her house was infested with cockroaches (they were even in the toaster!) and she didn't seem to notice. She had never majored in housework (a trait I am proud to say I have inherited) but by the time my sister had gone to visit we realised things were not right. We decided she would have to come home. She was furious, declaring there was nothing wrong with her.

A year or so after she came back from Zambia, there was no denying it. We sold her house and bought one in the same street as my sister so that we could keep an eye on her. Gradually things got worse. She took to playing the piano in the middle of the night (the neighbours loved that, she played the piano like Les Dawson on a really bad day) and for some reason she kept putting washing powder in the salt cellar. 'You've done it again, grandma!' one of the grandchildren would exclaim, having ruined yet another plate of burger and chips. One day a neighbour came up to my sisters while I was there - 'Can you help your mum?' he asked - 'she's trying to buy a cornet from the ice-cream van with a pen.' By the time we got down there, the van had gone. Mum was sat on the garden wall in the sunshine, enjoying her ice-cream. There was no sign of the pen.

Finally she acknowledged that something was wrong. She would write lists and would do sums to try and keep her brain functioning. But gradually, she couldn't do the sums any more. It was heartbreaking seeing someone who adored mathematics and with a career as a maths teacher behind her, struggling to add up 3 plus 2 and being unable to spell the simplest of words. After a couple of lucky escapes we had to disconnect the gas supply and she was living on microwaved meals. She refused to let social services in and they said they had to respect her wishes. On some days she was positive, even making jokes. 'At least with no memory, every day is a surprise!' she said. 'And I don't mind eating the same thing two days in a row because I've forgotten I had it!' But on other days she was in dark despair.

One of Mum's paintings
Eventually mum decided she wanted to move into a retirement home, which was something of a relief, especially for my sister who, living closest, had been doing the lions share of the caring. She took up painting and colouring - getting through colouring books at a terrific rate - and would paint everything in wild, psychadelic colours. She couldn't read any more although she loved to have poetry read to her. Her favourite was Philip Larkin's This Be The Verse. 'They fuck you up, your mum and dad,' I would read, and she would roar with laughter. TS Eliot's Macavity was another favourite. And almost right to the end, when her memory had almost completely gone, she would still remember songs and hymns, sometimes the whole thing, word for word.

She attended a clinic at BRACE and underwent cognitive tests as part of their research. She knew it wouldn't help her, but she hoped it might help others in the future. When we cycled Land's End to John o'Groats we hadn't originally planned to fundraise for charity but people kept trying to offer us money. You must be raising money for something,' they would say. 'You can't be doing it just for fun!' So we decided to raise a bit of money for BRACE along the way. It wasn't a huge amount due to lack of forward planning - but every little helps I guess. As BRACE point out, research into Alzheimer's is woefully underfunded, despite the prevalence of the disease. Terry  Pratchett, in a speech in 2008, two years after he was diagnosed with Alzheimer's, pointed out that funding into Alzheimer's amounts to only 3% of the amount of funding that goes towards looking for cancer cures, and he personally donated £500,000 towards Alzheimer's research. Today's Government announcement that funding for dementia research is to be doubled is very welcome. But what we also need to do is talk about it a lot more. A public awareness campaign is due to take place in the autumn; I truly hope that these measures will mark a turning point in how we deal with dementia.

If you want to donate to BRACE you can do so via their website here, and if you want to know more about Alzheimer's there is lots of information here and you can donate to the Alzheimer's Association here.


  1. Hi, found your blog after reading and thoroughly enjoying your book! This was very touching to read - my dad suffered from Alzheimer's, and after he'd forgotten who we were could be cheered up by a good hymn-singing session!

    Looking forward to reading more of your stuff. Partner and I agreed you sound like someone we'd love to spend an evening with over some good beers. (Not an overture from swingers, honest!)

    Now I have to type in 2 indecipherable squiggles to prove I'm a real person...

  2. Thank you Emma. Interesting that your dad enjoyed a good hymn singing session as well. There seems to be something about the memories laid down for music and poetry. Glad you liked my book too. Ellie