Well it’s back to me after my daughter’s ‘guest’ appearance yesterday. She sends a BIG thank you for all your kind comments. I have 2 wonderful daughters and am bursting with pride at the support they’re giving me. More ‘guest’ appearances over the coming weeks and months.
I’ve learned in the last 3 months that doing nothing is not an option.
I attended a conference last week at York University with my daughter Sarah – ‘Women and Dementia’ – another ‘WOW’ day. Link below to a fantastic website if any of you would like to take a look:
There were probably about 80 people there, most being health care professionals and academics with an interest in dementia. Also present were 6 people with dementia -including me.
The day was extremely well organised. There were various workshops to attend – we had to choose one in the morning and one in the afternoon. They’d had the foresight to give us ‘wonderful 6’ a workshop of our own. They’d even thought to take us away from the crowd to a quieter area ( I was particularly grateful for this as lots of chatter and noise becomes blurred and incomprehensible).
What then took place in that room was truly remarkable. We set the scene with laughter – ‘If we suddenly think of something to say which pops into our heads, put your hand up and say it there and then- because we’d only forget it if we didn’t’ !!! (still makes me chuckle)
We each told our story. The common theme we’d all experienced post diagnosis was one of abandonment and despair through lack of support and services available to help us through that initial period. Here were people having been diagnosed 15 years ago, 9 years ago, 2 years ago, 18 months ago and me, 3 months ago – and yet still, after all this time, nothing had changed – there was that same feeling of abandonment now as there was all those years ago.
But out of all that sadness came more laughter and positivity from each sharing our coping strategies. We didn’t bat an eyelid when we couldn’t remember the right words – we all knew what we meant. One positive thought led to another – it wasn’t just idol chatter, it was ‘what can we do to change all this’.
We all said that in a room with others who have dementia, we felt we were with family – at ease and not being judged.
One lady has a ‘Memory dog’ – Poppy – how magic is that! I want one!. A dog that can alert you to take medication, remind you to eat and drink – anything. Pure magic. We overran – we could have talked all day and more but we had to stop so everyone else could have their lunch.
So that was the morning…now for the afternoon – a very different experience…
After lunch, I was in a workshop entitled ‘Women in the Workplace’. Two of us with dementia sat with about 20 other healthcare professionals ranging from university lecturers, researchers, Care Quality Commission (CQC) person and care home specialists. The ‘family’ had been dispersed. These people made very valuable contributions but the discussion around care homes left me despondent and sad for the future. As in any service there are brilliant care homes and ones that shouldn’t exist. None of their staff are legally bound by legislation to have any training in dementia…………….Sarah highlighted the brilliant design of one home in York that she’d recently worked in. It has a circular walkway where dementia residents can walk happily and safely for hours without getting lost. She also highlighted another care home where she was rebuked by other staff for ‘chatting’ to a resident as they didn’t have time to ‘chat’ as they had work to do…………..
Student nurses on her 3 year course are provided with 1hr 30mins of training on dementia – that’s in the whole of their 3 year course……..how appalling when lots of nursing time will be working with those that have dementia no matter what field they enter. After all, dementia patients exist on every ward .not just on wards for the elderly. Her lecturer is working towards getting this changed before she retires in a years time – I’ve got everything crossed.
I sat in a workshop solely with women with dementia and felt at ease and part of a family full of laughter and positivity – ‘what can we do’, ‘this is what we can do’. I sat in a workshop with health professionals, and although there were some wonderful people, why did I come out feeling despondent, frustrated, detached and in despair for my future?
The main them that resounded throughout the whole day was the need to include those with dementia in any decision making. To exclude is not an option.