At midnight on January 31st I was just about to switch of the light when my Kindle Fire ‘pinged’ announcing the arrival of my pre-ordered copy of Wendy Mitchell’s amazing book ‘ Someone I Used to Know’ Wendy is a fellow campaigner of mine and I admire and respect her and am in awe of all she does. I read all through the night until I had finished the book, even more in awe at the end. We are so different yet so alike. We have made different adaptations to our lives to enable us to cope with the Dementia in large and small ways. Like Wendy I do not want my family to have to care for me in the later stages, yet I am aware that I need to ask them to do more and more already, friends as well. I too thought of Dignitas but decided against it, not because of my children making the journey back because I had planned to go with a friend who would grieve but be strong, my reasons are around having a strong sense that this is something I have to accept and go through with.
We have similar losses, I was the woman who read a book every day or more, now reading an actual book is so difficult. I find the Kindle so much easier, I can adjust the font size and find my place more easily because I am not reliant on page numbers – numbers are one of my biggest losses. I use Audio Books more and more and am so grateful for them. Lost my cooking skills – and I was a good cook who loved cooking but you need numbers for cooking, for weighing and timing.
I don’t share Wendy’s retained ability to type quickly and I used to be so fast. I don’t notice mistakes and my posts on Facebook or any other forum can and usually do contain a lot – and I was so good at spelling. A loss of Spatial Awareness has been huge for me, especially when it comes to getting dressed and I can’t work out which bit of me goes where. I’m longing for summer when I can go bare-legged and don’t need the warmth of tights or trousers. I don’t have early onset dementia so I’m a lot older than she is and since the 1980s and a severe road traffic accident I’m not as fit. I’m very aware of this on the occasions when we have walked together to Alzheimer’s Society headquarters and I am panting to keep up with her as she strides along with her walking poles.
I share her experience that being busy campaigning, writing, speaking is what keeps me going and knowing that when I have a break from it as I did over Christmas I lose something, confidence, ability, motivation, energy and it takes a while to get back.
Wendy is so good with her i-pad, using it to take photographs to help her get around and in so many other practical ways. I think the 20 year difference in our ages explains that. Plus I’m a technophobe and she clearly isn’t. My mobile phone is usually switched off or on silent by mistake, or I don’t have it with me. At a recent meeting I was at someone told me about setting it with reminders but I am going to need a son or a grandchild to show me how to do it and will probably forget to ask them anyway.
The biggest difference is that I do not live alone, I live with my husband Paul who is very frail and as far as we can we look after each other, but this responsibility for both of us is enormous and getting heavier all the time.
But in spite of the differences we are also the same, determined to find ways to adapt to the never ending losses of this illness, determined to raise our voices and say ‘Listen’ we are here, we have things to tell you, things you need to listen to, things you need to know, things you can do to help, because one day it might be you or someone you love. One of my great sadnesses is that when I was a carer I made all the mistakes in the book because there were no Dementia Voices telling me what I needed to know to do it better. There are now.
Wendy Mitchell has a different experience to mine, yet there is also so much that we share, the biggest being that we may both have this illness – but it hasn’t got us. It will win one day but as yet we are still ahead. Buy her book and read it, She tells it like it is. We all need to.