One of the most important pieces of work I have done as a Dementia Campaigner was taking part in the re framing of the Dementia Statements, especially the one that says ‘our Dementia does not define us, nor should we be ashamed of it. Well I have never been ashamed of it but sometimes I wonder if I AM being defined by my Dementia. Having coffee in the cafe downstairs recently someone came up to me and asked ‘ are you the Dementia Lady’ It caused a shiver to go down my spine.That certainly isn’t who I am and it definitely isn’t who I want to be. Since I became – for want of a better description a Dementia Activist – my life has changed in so many ways. In many ways this has been positive. I have some wonderful forever friends in the Dementia bubble and being with them, working with them is a joy as well as giving me the satisfaction of doing something worthwhile.
But the ‘real’ me is different. The real me was at her happiest watching Cardiff Singer of the World, that amazing feast of opera that comes along every two years,at my U3A Poetry group reading and discussing the work of Robert Frost,watching Manchester United at My son’s House with him and my grandson,joking with my grandsons on Facebook, Drinking too much with my sisters, the shared memories, good and bad at family get- togethers. Listening to Audio books as I can’t read novels so well any more but audio books are wonderful whether it is Stuart Macbride, Nancy Mitford or James Joyce.
It isn’t something I talk about much but the most important relationship in my life is my relationship with God and nurturing that is vital. I don’t get to my Quaker Meeting much any more because of transport difficulties but I go to the village Anglican Church where they welcome and accept me. I have reached a time of life where the only thing that matters is the gathered two or three.
But of course other relationships are important, with my children, my grandchildren, other family and friends and though these days I rely more on them to reach out to me, thankfully they do and loneliness is not one of my problems.Not of these wonderful relationships have anything to do with Dementia.
And there is still so much to laugh about – although often Dementia related. Going on the bus recently from Madeley to Newcastle I was determined not to get off when the bus got into the grounds od Keele University. ‘Keele has been so much a part of my life that I am always interested in looking at what is going on as the bus meanders through and have often tried to get off when I reached the step nearest the counselling department. So I was very pleased when I reached the bus station in Newcastle having had no impulse to get off at all. But – Sod’s Law – I had been going to a meeting at the University. If I knew how to get old of sod I would kick him..
Well I’ve started blogging again – see next week. I don’t think I could manage a daily blog like my froiend Wendy Mitchell but I will try to do better.
5 thoughts on “Defined by Dementia? Please not.”
A super read, with great humour and wisdom. Thank you
Lovely post, Shelagh. Keep them coming.
Love your blogs and the wonderful memories of our times together & the times we will have together going forward, laughing and loving life. The nurturing you gave me as a newly qualified counsellor was one invaluable. I, carry a little piece of you with me everyday & always will Much Love special lady L x
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It’s been a while…but worth the wait. Thank you for sharing your thoughts and experiences.