Collaboration with Helen Roberts at York University.

Helen Roberts – asked ages ago if I’d be interested in being part of a 6 week module on Dementia Care that she intended running at York University.

Helen is a senior lecturer in the Department of Health Sciences here. She was part of my daughter Sarah’s, 3 year nurse degree course and was responsible for changing this years nursing degree course along with Rob Allison.

I was to be involved in the 3rd day on Living with Dementia. The first 2 days of the module had included Changing Perspectives and Evidence base for Dementia Care

The attendees are all nurses with the addition of an occupational therapist, so I was really looking forward to the day. Helen decided to let the first two days happen before deciding on the content of my day, which was a good move as then she could ask the students what they wanted to learn from me.

At the end of day 2 they watched the film I made for the BBC – Living with dementia –  http://www.bbc.co.uk/news/health-31773339 – and this prompted many questions so this gave us a starting point for the discussion with me.

From all this I’d planned to talk about pre diagnosis, what it feels like, strategies, changing perceptions and how their use of language can help, and my thoughts on the future. I’d said that no subject was out of bounds because if they don’t hear me talk about it, how can they talk to others……

I did have to apologise at the beginning of the day for having my phone switched on but, to complicate matters and to give a little edge to MY day, I was hoping against hope that all parties had finally exchanged contracts on the house, so I was desperate to hear the phone ring and my solicitor confirm that we were on track……………..needless to say it didn’t go quite as planned but I had an email from my solicitor at lunch time to confirm that contracts had been exchanged………..and I can finally breathe……….

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The nurses were very quiet at the start but this is usually due to them being unsure as to how I’ll be, so once we got going and I assured them that no subject was out of bounds then their questions started…..they struggled to understand why I could type and yet struggled with words if I didn’t have things written – it really is a case of that bit of my brain not having broken.
Another conversation was around not finishing the sentence off for a person with dementia. Some thought it was kind to find help find the words – however, I said that if you did that for me it confuses me. I told them that my brain is simply slower and to put the word in my head before it had reached my own brain simply confused and slowed me further. What we usually need is TIME. Sometimes I can’t find the word and I may simply use ‘thingy’. In the grand scheme of things, what does it matter if I don’t use the right words……..
Another question was – If a patient says they can see things which clearly aren’t there how should they react? They know they shouldn’t contradict but didn’t know the best way to deal with the situation. I suggested just living in their moment and simply ask a question, for example, if the person with dementia saw a figure ask them ‘What are they doing’? That way you’re engaging in their world without causing confusion or anxiety.

We spoke about ‘language’ and how it would help if nurses used positive instead of negative words and my reasoning why. Lack of post diagnostic care and what it should look like was another topic.

We talked for 3 hours about all manner of things but I couldn’t type and talk so have lost some of the detail. Once again it was great to be involved at York Uni and talking to nurses is always enlightening.

I often think that it should be the people who don’t sign up for these events that would benefit most from attending. Once again, I can’t believe that I didn’t take any photos of me and Helen!!

Helen is due to retire early next year – needless to say she can’t wait…….but after my own experience of how busy life can get post retirement, I don’t think she’ll have much time on her hands and will be much in demand.

 

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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.

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