Extreme Knitting Redhead: On the eve of the G8 Dementia Summit

Tuesday, December 10, 2013

On the eve of the G8 Dementia Summit

I am feeling pensive. I've been thinking about why I'm still campaigning for more funding for dementia research after 8 years, which is a question I'm asked quite frequently. My answer is simply that I was so horrified by what happened to my mum that I had to speak out about it and try to change things as I can't bear to think of anyone else having to suffer the way she did. I could write so much about this but for now I need to focus on tomorrow.

Tomorrow is such a big day. It is the G8 Dementia Summit, which aims to develop co-ordinated global action on dementia.

I am willing it to be a success.

I've been blogging about it all over the place, looking at it from different perspectives - as a carer, as someone who watched her mother descend into the darkness of dementia, as a campaigner and fund-raiser.

I have piles of paper on my desk all covered in highlighted sections for when I'm interviewed so that I can ensure I get the salient points across. There are notes scribbled on scraps of paper from when I've been out running and had an idea. My head has been full of this event for months now.

I've read many articles but Simon's post today, referencing a speech made by Nelson Mandela really struck a chord. In fact it was just one sentence that I've been turning over in my mind: "The challenge is to move from rhetoric to action, and action at an unprecedented intensity and scale." Although he was talking about AIDS it applies equally in the battle against dementia.

Yesterday I spoke on the Channel 5 TV News about the link between diet and lifestyle on the risk of developing dementia. Tomorrow I shall be speaking on BBC radio, on 2 separate shows so far but there will probably be more, about what I hope will come out of the G8.

The G8 Summit in 2003 marked a turning point in the battle against AIDS by focussing international attention on the disease. My greatest wish is that events tomorrow will set the wheels in motion to put in place the same level of international commitment for dementia research.

Tomorrow is also the last numerically sequenced date this century 11/12/13. I'm hoping that is a good omen.

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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.