Meeting of Women with Dementia group

Yesterday I trundled off to York for our monthly meeting of Women with dementia. It’s organised by the wonderful Emily Abbott of:

http://www.herenow.org.uk/#projects

web site and ably  assisted by Lorraine. We couldn’t have the group without them. I’ve certainly lost my ability to organise other people. I have enough trouble organising myself now…..

I’m forgetting to put things on my calendar. Twice recently I’ve had to let someone down as I’d booked something in a date I thought was empty when I’d already promised to be somewhere else. The worst became apparent last week when details about meeting the PhD students at Bradford Doctorate centre came from the lovely Barbara Woodward Carlton. I was gutted, as I love meeting students and felt terrible at messing up but I’d just forgotten to write it on my calendar.
Bizarrely, the other was also Bradford for a patient involvement meeting. ………..I need to find another routine or method of recording when I agree to something…….It makes me sad that I’m now struggling to organise me – that’s something very new….

Anyway I digress…..back to yesterday, which I didn’t forget.
It was a dull, rainy day as the bus made it’s way to York from Beverley, even the town cows were firmly sat on the Westwood protecting their dry spot.

Lorraine had kindly agreed to meet me at the bus stop and drive me to the hall.
We had a guest visit our group; Danuta Lipinska. Danuta pioneered counselling for people with dementia apparently and had come to the group as part of her research for a book about sex and dementia. I had been wondering, prior to the meeting, how on earth she would stop us going off piste and talking about anything and everything, which is the challenge Emily faces every month!

It was our 3rd meeting of the group and we had 2 more new members, so this week we were 9 women with dementia – amazing!

Emily and Lorraine felt the need to leave the room while we chatted to Danuka as they know lots of the people’s partners and although we felt comfortable they didn’t……

Danuta then spoke about her project – she trained as a nurse but then turned to counselling.
She supports men and women who have dementia through counselling. We should have access to counselling – she wrote a book in 2009 that is written with everyone in mind.
image
We spoke about what we think should be included in her new book. My contribution was the need for counselling for couples at diagnosis as we’re not the only ones to get the diagnosis. When you’re diagnosed the whole family receive the diagnosis so the whole family should sit and talk.
Friends of mine, the husband has dementia. He says he loves his wife but doesn’t know how to love any more as he’s lost that emotion. He says he loves her because he must do, as he always did.

We set rules at the beginning of the discussion and I said I wouldn’t record any specific comments in case anyone felt uneasy about me typing away.

We had a walkabout and photo opportunity while Lorraine put out lunch and then resumed for a while. But all too quickly it was time to leave. I’m not sure how much Danuta got out of the session but as someone in the group said:

‘It’s good to share’

As usual we had such a laugh and Danuta kept having to refocus the group, but that was inevitable……

Someone said “ I’ve had such a laugh, it’s far better than sitting at home on my own’

She asked if she would get the same reaction if she met with a group of men.

We’d like to be a fly on the wall………….

Our lovely group with Emily and Danuta...
Our lovely group with Emily and Danuta…
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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.

4 thoughts on “Meeting of Women with Dementia group

  1. Wendy — just a quick word to thank you for your entertaining and informative e/mails. You are right — family members (carers) should be included in the counselling as it is so life changing for us all. Would a “tape-recorder” or something like that help with you trying to keep on top of your “meeting” diary? Take care

    Liked by 1 person

  2. Hi there my name is Claire and I’m on here writing to you as my mum Audrey was a dived to fallow you on this site because we have heard lots of good things about you.my mum is 50 and was diagnosed with Alzheimer’s when she was 46.it has taken me about 2hours to set her a blog up and another hour showing her who to use it. We are still in the early stages of Alzheimer’s but she is starting a trail of new drugs which she has to go once a week to Leeds to get bloods and a brain scan.my mum has 4 children oldest aged 30, the second 29 ,the third 26 which is me Claire and the youngest 21.me and my brother Still live at home at the moment but its my dad who is 54 how has to look after my mum 24/7 and they have been married for 32years in August. She is getting use to this blog site so hopefully it will keep her stimulated during the day.thanks claire x x Audrey’s daughter. X x

    Liked by 1 person

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