George's lockdown story

I have now locked myself down for over a month.  I have mixed dementia, and several other conditions including diabetes, heart disease and kidney disease. So, while I am not in the highly at risk group, I will be at great risk of death if I get the Big V.

I am incredibly lucky to have lived here in North Shropshire for forty years.  My wife and I are keen gardeners, so I am spending a lot of time in the greenhouse and getting the veg patches ready and planted.  I have a youngish Viszla dog, Lupin, who needs a couple of good runs every day, and I have always hugely enjoyed walking around the countryside.  I can walk out of my drive and around the very isolated lanes and fields here, without meeting anything other than the odd pheasant or partridge.

I love watching the new growth in the hedgerows each year, so Spring is great for me at and near home.  And I listen out for each newly returning migratory bird.  I use Twitter a lot, and at the moment ZOOM, to keep in touch with friends in the dementia world.  And I blog once or twice a week.  Blogs allow me to write, to reflect, to share, and to communicate.  Writing them flexes my intellect and my use of words, as well as perhaps helping others affected by dementia to understand the disease and its effects a little better.

I decided at the beginning of this isolationism that it would be a good opportunity to learn some new things.  I have started whittling and creating some simple wood artefacts.  Whistles, signs, coat hooks, coasters, walking sticks.  I just pick up fallen branches on my walks and take them home.  And I am learning to look out for branches which have shapes that will suit making something.

I am a keen photographer too, and I use my camera eye to look closely at the natural world around me.  This is good for mindfulness, emptying the mind of other thoughts and just focusing on what I see, or hear.

I have promised to learn to knit too.  The DEEP network is calling for knitted squares to create a huge hug rug to celebrate our togetherness in this time.  My first attempts have been pretty disastrous, but I will try again, and again...

I do have a jigsaw which I bought a few years ago, wondering whether it might occupy me and my deteriorating brain some time.  But I cannot bring myself to start it.  I really have a thing about jigsaws!  They seem to represent, for me, old age and incapacity so it will await my later years.

I am finding this a very pleasant time to be stuck at home.  But it is a time of awful contrasts and contradictions.  Three in my family work in hospitals, and they see death every day.  Deaths they cannot prevent.  And that is hard.  On our ZOOM meetings, we increasingly share news of illness or death, and then return to keeping our spirits up. 

I am dreading the day when I feel some pain or illness that makes me need a GP.  My last ten years make it infinitesimally unlikely that I will get through a year without needing a doctor. 

We don’t have any worthwhile support for people living with dementia where I live, and luckily I don’t need any day to day.  But there are lots of people, carers and partners, who will be suffering hugely this isolation from normality and the confined closeness it has brought.

Dementia at the moment has pretty much been forgotten.  Understandably, perhaps.  But dementia does not qualify us for any special help, like food deliveries, or even separate queues at shops, and plenty will be needing this sort or support.

I have worked hard for many years now to get dementia better understood and on commissioners’ agendas.  That is all swept away now.  And while it is a huge relief for me, not having that constantly nagging anger about being ignored, and the painful swelling on my forehead, I wonder how or when we will get dementia back to the place where it needs to be, on the table at every meeting of every CCG and Council and Health Provider.

Until then, I shall grow my vegetables and roses, make my whistles, walk Lupin around the fields, and meet my good friends on ZOOM each week.  And struggle with tangles of wool.

- George Rook is in his early 60s and is living with mixed dementia.  He is a dementia activist and writes a blog called Living with dementia as well as I can.  You can also follow him on Twitter @george_rook

April 2020

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