Extreme Knitting Redhead: Terry Pratchett and the Alzheimer's Research Trust

Wednesday, March 26, 2008

Terry Pratchett and the Alzheimer's Research Trust

I should have written about this a couple of weeks ago but for some reason I didn't. I was very sad to hear that the prolific author Terry Pratchett was diagnosed with Alzheimer's at the age of 59. His Disc World novels have a cult following. I was very impressed that he has pledged $1,000,000 to the Alzheimer's Research Trust. Not only that, he addressed their annual conference with a very moving speech which you and read here What a brave man for speaking out about this dreadful disease. The ART told me they have had many enquiries and donations since then and to have such a high profile person speak out is simply wonderful.

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Mum's Story

In 1997 my mother, then aged 81, had a series of minor strokes. Shortly after that we started to notice behavioural changes notably memory loss and confusion over everyday items. We thought it was just old age finally catching up with her. Then she started wandering and had violent mood swings. Although she already lived with us it became obvious that she couldn't be left alone for long and so I left my job to care for her. The next few years saw a gradual decline into the blackness that is 'vascular dementia'. My normally placid mum became violent and aggressive. She had psychotic incidents where she would see imaginary people (children hiding in her wardrobe, Russians sitting on the stairs, women stealing her clothes) and she would shout at them and sometimes throw things too. She was so convincing that we used to go and check that there wasn't anyone there! When my sister died mum did not know who Judy was or that she was her daughter. There came a point when I suddenly realised she no longer knew that I was her daughter and this was a terrible time for me. In the last 2 years that she lived with us, life for us all became almost unbearable as she needed 24 hour care - she couldn't be left alone at all because she would either wander off or hurt herself, she never slept for more than 30 minutes at a time during the night, she became incontinent and incapable of doing anything for herself. Finally my husband and I realised that we could no longer provide her with the care that she needed and she went to live in a special care home where the team did a splendid job caring for her in the last few months of her life. There she lived a zombified existence unaware of who she was, what she was or where she was. It was heartbreaking. She died in March 2005, the day after her 89th birthday.

Thank you for taking the time to read mum's story and I hope you'll dig deep and sponsor me using the link below to help find a way of beating this destructive disease.