Busy Week Ahead…..

Yesterday, I had to miss one of my favourite support groups in York – Mind and Voices. It’s always so nice to see everyone, but this week, there’s just not enough days in the week……Monday was the only day I had a chance to be at home so I had to forgo my monthly trip to York….
The group will be told about a special visitor we’re having in September. Tomofumi Tanno is a young person with dementia who is campaigning in Japan and is in the Japan Working Group (now 43, diagnosed at 39) . He contacted me via Onourradar (the little contraption we use to record our thoughts on anything and everything…)


He met Philly Hare while she was in Japan and said how much he would love to meet with people with dementia in York when he’s doing a return visit in September. It’ll be really good to hear of the attitudes and public awareness in Japan. Not sure my linguistic skills will be good enough to learn ‘hello’ in Japanese!

Today I’m meeting Michelle Cooke, the Assistant Director of Community Services and Older Peoples’ Mental Health within our Trust. I’ve been invited by Janet Woodhouse, Nurse Consultant for the area who I’m involved with at Beverley Community Hospital. Janet though it might be a good opportunity to talk about my lack of support in this area and the experience I had when I first moved here. I was referred by my previous community nurse in York to the regions ‘Single Access point’. This area has an under 65’s team, that don’t look after people with dementia – and an over 65’s team, who do look after people with dementia. Because I have a diagnosis of dementia they decided I should be referred to the over 65s team (even though I’m 60……🙄,) who then promptly closed the case and referred me back to the care of my GP as I’m too young to be under their care…..ALL without telling me any of this. I only found out when I emailed asking why I hadn’t heard from anyone……….
Janet and Michelle are currently involved in developing new pathways to support the local delivery of care to people living with dementia so this conversations will be very timely. I just hope they have younger people with dementia are on their radar – if they don’t, I’ll make my point………more to follow tomorrow hopefully……

The rest of the week is spent in Bristol as it’s the Alzheimers society’s 2 day Research Network Conference. I’m speaking on Friday morning and how to encourage public involvement ……..hopefully I’ll see many old and new friends………..and will probably be very busy on Twitter……#AlzSocResearch………

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

2 thoughts on “Busy Week Ahead…..

  1. Ooh, you’re in Bristol! That’s near where I live, but unfortunately I can’t come that day. Wish I could. Love your point of having the same sense of humour – through my work at the local hospital with patients who have dementia, that is very clear. Never laughed so much, WITH them, not at them, of course, since I started volunteering! Good luck with your talk in Bristol, though I don’t think you’re going to need it. You are fantastic! xx

    Liked by 1 person

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