Having a voice…

I was invited by the Alzheimer’s Society to go to the Service Users Review Panel Conference in Manchester here in  England and obviously said yes please.  There were lots of groups represented in the room with both group facilitators and a few people with dementia – PWD.  For those of you who don’t know what these groups are about I shall tell you what they are and about my day.

I belong to the West Berkshire Empowerment Group.  This is a group that meet once a month to discuss and review…just about anything.  Any issues that have any sort of impact on someone living with dementia.  As part of the DEEP – Dementia Engagement Empowerment Project there are around 38 groups in England, Wales and Northern Ireland, and more in Scotland.   The groups are made up of people with dementia and a facilitator and is designed for people living with dementia to have a voice in just about anything locally, hopefully to also have an impact nationally.

First of all, I shall admit I was invited to this day – to go to a conference in Manchester and actually I had no idea what it was about or why I was invited.  I get so confused as to each of the Societies, Services, Groups, and Organisations are and whether they are affiliated to each other.    The trouble is one organisation is an umbrella for one topic, which in turn is an umbrella for various groups…and I can’t keep up with it.   So there I am going to a conference that is by the Alzheimer’s Society Organisation and had no idea it was for Service Users Review Panel groups, and then….I had no idea that the West Berkshire Empowerment Group was a Service Users Review Panel.   And, where the hell does DEEP come into it all, who is that affiliated to?  I have dementia for goodness sake I am struggling to keep up with who is who these days…

Anyway, it was a great day in which highlighted lots of work that many of the groups had done and were doing.  For instance, one group has worked with Royal Doulton in producing dementia friendly china ware which is not an insubstantial impact in dementia care.

In our group the West Berkshire Empowerment Group in the past we have given our opinion to research on books/novels specifically published for PWD.  Reviewed electronic gadgets such as key finders.  The group went to the Royal Berkshire Hospital at Reading to look at the signage and our review was passed back to the hospital for improvements.  We suggested a purple wristband for PWD so that they can be easily identified, because we know that many people like myself do not show obvious signs of difficulties, but after an anesthetic we could quite badly affected with confusion.  This has now been approved and the hospital has put this practice in place.  We also look at public transport and whether that is dementia friendly.  The groups also help the local community become dementia friendly.

This conference looked at what format worked for each of the groups, for instance some of the groups were on a 12 month basis only.  Some of that is because of funding.   The group I belong to rolls on and on and on…we have no time limit.   Our facilitator Louise Keane is particular active in ensuring that we have some great issues to discuss and review, and it became apparent to me that her  attitude towards the group is brilliant and makes our group attractive for institutions such as Reading University, and other services to approach us for our opinions.  Thanks Louise!

The opinions that were talked about were being looked at those organising all of the groups and it was quite surprising for me to hear that the lack of support for facilitators was felt by some of the new groups.  But this was a topic and a great one too to be openly discussed: could it be improved and enhanced. For me it was interesting to hear some people say they didn’t feel supported in knowing how to end a group after the 12 months, or how to deal with someone whose dementia had progressed and could no longer take part in any discussion. So it was good this conference highlighted these issues, and for me as a PWD to hear that.   I am sure that training for our facilitators will improve to enable the groups to grow and give us our voices.

It was great to hear how some of the work that the groups had done had impacted not only locally but was being looked at nationally.

It just goes to show how small groups of people with dementia can have such a powerful voice if only given the opportunity to speak.   Anyone living with dementia who wants something more than just pleasurable activities, who would like a voice then I would encourage you to join your local DEEP group.  You can find your nearest group on their website.  Come along its great to be involved and obviously you get a cup of tea!tumblr_mqmztxxppp1rzwv55o1_500

Mobile wifi signal malfunction no blooming tinternet!

Image

I hate forms!

I have always hated filling in forms, I get ‘bored’ after the first page.  I fail to read the instructions, and then cannot remember them when I do.  I get tied up in the semantics so that I don’t understand what exactly it is asking me to do.

I have to fill in a form to make an appeal, it was bad enough filling in the first 61 page monster.  That took me 4 weeks, this one has to be done today.  Why is everything so difficult?

Gave up and phoned instead…that was just as bad, I hate explaining myself, I get tied up with what’s in my head and what’s (not) coming out of my mouth!  I have a sheet of paper in front of me to read from that I wrote earlier, so why can’t I scan down and read it.  I forget things I should say, and say things that are not remotely helpful.

I tried to blog this yesterday but the blooming tinternet wifi dongle had no signal.  So much for a daily blog

I lay in bed this morning thinking about forums and talking to ‘she who prods me in the face with a paw and meows loudly 1cm away from my face’.   I must explain, I am unable to get out of bed first because I am furthest in under the gunwale, and Mr Hs has to get out of bed so that I can get up.   I am awake early, he likes to lie in.  Piewacket black cat chivvies me along every day to get up as early as possible and fill her’s and Dozy’s bowls.

Forums – forums to support those with Alzheimers/Dementia and their carers..I know, I know..it seems crazy to think that sufferers should have the where-with-all to join in sensibly…well, let me tell you I and some others still have some live brain cells left and will continue to use them for as long as possible.  Anyway, I digress.  Support I thought, that would be helpful, and yes they are lovely lovely people, but reading the threads are TERRIFYING for a sufferer as it is full of carers sharing their stories and sadness of their loved ones whose brain cells have died.   Bloody hell, I thought, here I am wishing to get the absolute most out of being compos mentis, only to read how I am going to make my loved ones suffer when I am not.   It feels like the things that I want to talk about, cannot be spoken about and needs to be hidden from the carers….It is too raw, and too honest to be openly spoken about.

Living Will – I was unable to find any threads about those who wish to have a living will.   I want one, hell’s bells in no way do I want my family to remember me with such sadness, and trauma of having to care for me.     I have talked it over to Mr Hs and when the time is right, when I am no longer me, should I become ill, pneumonia or such like, no way do I want any treatment.  No resuscitation, no treatment end of..

And now to go get food, because the fridge is empty and Mr Hs will need feeding today.