There are so many ‘unexpecteds’ about having Dementia but for me, amongst a lot of dreadful things, the shining positive is the number of wonderful friends I have made.I would want to say to anyone who has a diagnosis is find a Dementia Community, somewhere you can meet other people in your situation, preferably at a similar stage to you and leave the carers behind. I’m not disrespecting carers; family or professional but they bring their own agendas and with the best will in the world will overprotect you. If you feel nervous about it, go on line and find Dementia Diaries, the thoughts, feelings and experiences of others living with Dementia. When you have laughed and cried, been inspired been helped, found tips you had never thought of to help you manage this new world you now live in, then join yourself and add your own voice. Before you know it you will have new on line friends, start going to face to face gatherings and suddenly life is so much richer. Join the Alzheimer’s Society, get involved in their campaigns, add your voice to the ever louder Dementia Voice. The louder it gets the greater the possibility that our lords and masters will be forced to listen.
My favourite group is the Zoomettes, a group of women who meet on line once a week to talk about our lives, to share and to support. Sometimes it can be very serious – last week we talked about death and dying, wanting to end our own lives, how we wanted to die. Other times it is so funny I drop my lap top because I am laughing so much. Culturally women are used to meeting in all women groups, whether it is BCT groups, ante-natal clinics or the gatherings at the school gates. A male friend who has Dementia says it wouldn’t work for men – can’t answer that – but it certainly works for us.
The thing that lots of people with Dementia are getting very angry about currently is this bloody psychiatrist Professor Rob Howard (Think that is his name) who says and writes that a lot of people who are active in Dementia campaigning are misdiagnosed and could not possibly have Dementia
He has actually named some of them on Twitter, including my friend Wendy Mitchell, author of the brilliant book ‘ Someone I used to know’ and he has included the Three Nations Dementia Steering Group of which I am a proud member. I was thinking of him – with lots of bile- yesterday while I was attempting to order incontinence pads on line. It involved keying in three different long numbers on my phone and it took me over an hour. I couldn’t carry the numbers from my last dispatch note in my head long enough to key them in correctly. I was literally crying with frustration at the end of the process. I’m starting to need to open all the kitchen cupboard doors before I can find what I need – usually the bin-. Everything I do needs so much concentration and takes that little bit longer. Going out of the flat – stop – think- which way is the lift- get to the lift – which number is down – oh I remember it is the bottom button – go to get money out of the cash machine – how do I remember the number – I have to sing – what do I sing – I remember eventually and the code comes but the queue behind me is getting longer. I get on the train and the Alzheimer’s Staff have thoughtfully arranged my travel, what is this number on my ticket – which way do the numbers go so I can find my seat. Should I copy dear Joy Watson and wear a badge that says ‘ I have Alzheimers. Please be patient’ But I don’t want to do that. I am going across the village to the hairdresser and its pouring with rain but I go without a coat or an umbrella. i pack my bag to go away and forget my nightie.There are techniques for remembering all these things but I have to be able to remember the techniques. When people see me standing on a platform speaking without notes or chairing a meeting adequately they might be tempted to say ‘ You don’t look as if you have Dementia’ but Kate Swaffer has the perfect retort which I am far too much of a lady to use – mostly. ‘You don’t look like an arsehole’
But life is good. We went to Bridgemere yesterday I bought a beautiful new geranium to put in my plant stand and because it got a bit battered I have three new cuttings planted and growing away, well I hope they are anyway. Lunch with my sister later today and less then a month before the three sisters leave for Malaga and I am still snorting at an outrageous joke I was told yesterday but truly could not blog. Who cares about opinionated professors. Not I.