Extreme Knitting Redhead: Dark days but a glimmer of hope from DeNDRoN

Saturday, October 13, 2012

Dark days but a glimmer of hope from DeNDRoN

Dark Days

As the days grow ever shorter I am always reminded of this poem by Robert Louis Stevenson from 'A child's garden of verses':

Bed in Summer

In winter I get up at night

And dress by yellow candle-light.

In summer, quite the other way,

I have to go to bed by day.

I have to go to bed and see

The birds still hopping on the tree,

Or hear the grown-up people's feet

Still going past me in the street.

And does it not seem hard to you,

When all the sky is clear and blue,

And I should like so much to play.

To have to go to bed by day?

In summer I'm awake before the lark and raring to go and yet as the dark days draw in I have to drag myself out of bed. I sometimes think that hibernating is a sensible option.

I have done very little knitting or crochet this week because the cold damp weather coupled with playing around with clay at ceramics class has aggravated the arthritis in my left thumb. Boo to getting old and decrepit. I have however managed to weave a lot more of my crochet blankie as I haven't been able to get out in the garden because of the rain.

Thankfully, running has been OK and now I'm tapering (cutting down my mileage) ahead of the Beachy Head marathon 2 weeks today. It's going to be tough going on the South Downs after all this rain!

A glimmer of hope

This week I attended a meeting organised by DeNDRoN (Dementias and Neurodegenerative Diseases Research Network - that rolls off the tongue doesn't it?!). I was very excited as this meeting was to take forward an idea that was originally mooted at the Government Dementia Research Summit that I attended in July 2009 - to set up an on-line Research Register by which people with dementia and their carers will be able to volunteer to take part in clinical trials and other research studies.

I've attended so many conferences/presentations etc where much is promised and then nothing delivered that it really gave me a lift to think that something good is actually going to happen at last.

How fab is that!

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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.