A friends write up about one of my poems

This was published by a good friend of mine who also has young onset,
he is a founder member of of http://www.dementiaallianceinternational.org
Johns blog :-

A friend with YOAD and his new found way with words.
I administrate a support group of solely people with early stage dementia. We don’t have people NOT living with dementia helping with the group it is just us. I have heard at times from a few of the members that when they told their physicians about the group they were warned not to participate. This has left me totally perplexed when I have heard this. What are they afraid of, I sit and ponder? Is it a control issue that scares them? Do they fear we are making a suicide pact? What they dig up for a fear is beyond me. If these unenlightened professionals knew the truth, they would know that it is a group of people experiencing what I consider to be the worst possible disease. Why the worst? Because those of us that are aware of the process happening know that we are slowly losing the most precious thing in life, our brains. That being said, it is the most wonderfully supportive group I have ever been associated. Everyone is kind to one another and totally understands in a way the non-sufferers could never understand. People do not really even have to correctly say what is going on and it could be kind of a jumbled mess of writing and even through that the majority get the gist of what someone is trying to say. It is truly amazing.

I am very proud to be one the founding members of a new organization that is pulling the efforts of a number of people all living with dementia under one organizational roof as it were, called Dementia Alliance International. The live virtual support groups we are doing through that group are done with a software called Zoom. It is a web conference software that seems to be fairly easy for those living with dementia. It allows people who otherwise feel isolated to be in a “virtual” group every week and talk about what is going on with them. These groups are amazing and something we hope to expand greatly. Back to the support group I administrate, we do some informal virtual chats of anyone interested from that group once in a while, no scheduled basis at this point. But someone I have gotten to know in also that virtual world is a man named Chris Roberts who lives in Wales, U.K. Chris has developed an unbelievable talent for poetry in his Young Onset Alzheimer’s Disease. Artistic talents developing or blossoming with dementia are not totally uncommon but Chris seems to have such an art for how the words about our disease flow from his fingers. Here is a recent one that I am very fond of:

My memories waver on the edge of reason
Trying to be normal is no longer easy
A reprieve would be nice for just one day
But As I wait it never happens that way
Younger and younger my brain starts to grow
My emotions jumping to and fro
My limbs they tremble when I walk
My voice it waivers when I talk
All the inner pain no one can see
Stops myself being me.

Please understand,
what you can’t see !

© chrisroberts

His poetry is a rare but beautiful thing that can come from these diseases. If you would like to read more of his work, please visit his blog.
Until next time, be kind to one another.

John Sandblom
Here is a link to john’s blog

An excellent post by Shibley Rahman in reply to my day care rant

Chris Roberts’ plan to set up a dementia café: persons with dementia driving decision-making

March 9, 2014 · by Shibley Rahman

There’s been a persistent concern amongst many academics and amongst many persons with dementia themselves that persons with dementia are not at the heart of decision-making in dementia-friendly communities.

The notion of ‘no dementia about me without me’ has not been rigorously applied to dementia-friendly communities, with directors of strategy in corporates seeking to consider how to make their organisations dementia-friendly as part of a corporate social responsibility or marketing strategy.

Such directors are obviously fluent in how to present such a strategy as elegant marketing, to secure competitive advantage, to make money, so it makes absolute sense for them.

It also makes sense for the Department of Health and the Alzheimer’s Society, who are seeing through the policy of ‘Dementia Friends’ through a sustainable financial arrangement, to see this policy plank politically flourish. With every single newspaper article on dementia now mentioning ‘Dementia Friends’, it is hard to see how this campaign cannot succeed.

Norman McNamara, an individual campaigning successfully and living with dementia of Lewy Body type, reported yesterday on Facebook local success around the Brixham community area.

Chris Roberts, another person in his 50s living with a dementia, also mooted the idea of setting up cafés himself.

“Since being diagnosed, i’ve noticed that there isn’t a lot for people in the mild to moderate stage. There are dementia cafes of course, but these seem to suit carers more than the people with dementia, we just sit there smiling when looked at while our carers and spouses chat away to each other, sharing there experiences and so on.”

“There are 100s of thousands of us in the same positition with nowhere to go or nowhere to be left! We could popin for an hour or for the day. We could practically run the place our selves, some where we could chat and share, watch tv, play cards, draw , we would arrange our own activities not led by someone who thinks they know what we want!”

“Yes we can live with dementia, yes we could even live well ! Yes we could live even better !”

The “living well with dementia” philosophy is all about enabling people to pursue what they can do rather what they cannot do. There’s a chapter on activities in my thesis on living well with dementia, reflecting the fact that activities are not only promoted in the current National Dementia Strategy but also in NICE Quality Standard 30 ‘Supporting people living with dementia’.

The National Dementia Strategy makes reference to such activities being ‘purposeful‘:

And this gets away from the concept of persons with dementia sitting around calmly doing knitting when they might have been, for example, proficient motorcycle bikers:

When one criticises that persons with dementia are often not at the heart of decision-making, these days I get a standard reply saying, ‘we always take serious note of the opinions of people with dementia; in fact there are two representatives on our board.’

Yet personal feedback which I receive is that persons with dementia resent this “tokenism”.

Having persons with dementia at the heart of decision-making I feel is important in the campaign to overcome stigma and discrimination against persons living with dementia. Persons with dementia running businesses of their own dispels the notion that persons with dementia are incapable of doing anything at all.

As a Fellow of the RSA, I intend to apply for a RSA Catalyst grant, as well as to the Wellcome Trust (who funded my own Ph.D. in decision-making in dementia fewer than 15 years ago now), to investigate collective decision by people in earlier stages of living with dementia to see how they in fact shape their community.

I am hoping that this will be in the context of their ongoing research work with the RSA Social Brain project, and I am hoping to hear from other Fellows about their work there, shortly. I will be putting my grant in with various people who are genuinely interested in this project.

Night time

Wide awake at five past three
What on earth awakened me
Why can’t I sleep, why can’t I dream
This is my life now,…..it would seem
Days rolling into, the darkest night
Surely this,….can’t be right
The endless nights and days, That never end
The bad dreams, that the dark dous’t send
Wandering around the house at night
Trying to find that wayward light
The handles rattle, the handles turn
What is outside you have to learn
Your feet are cold,they freeze like ice
Someone shouts ! That can’t be nice
I was only lost, without the light
I didn’t need such a fright !
I just want to sleep and dream no more
Just let me through, sleep’s dark, large door
The door I look for every night
The Door that’s always just out of sight
Then I’m back in bed
You’re stroking my head
The woman from my dream
My darling wife It would seem !
© chrisroberts