In the shoes of Chris Roberts … | Living with younger onset dementia…

I enjoy spotting the story that sits behind a tweet. I invited Chris to tell us more…  

Chris was soon back in touch, keen to share his story… and then wrote it the same day.

I love these connections and helping people speak out and find new friends.

I love it even more when it co-incides with my Aussie pal, inspirational Kate Swaffer, launching a new global group helping people living with dementia speak out and linking people across the world…

It is so important to hear all perspectives. Media headlines such as “dementia sufferers” often stir strong feelings. “Suffering” is quite a subjective word – something we perhaps decide for ourselves, not an emotive tabloid label to group together people who happen to share a diagnosis. Such different circumstances, life experiences; unique; people at completely different stages of the disease.

Chris used the term ‘dementia sufferers’ in the draft he sent me and I ran this past him. He said “I leave it with you, you write more than me. I suffer more than live well, but that’s just me. Striving to control what’s going on and keeping oneself whole is very trying . But as you say, not always politically correct”

Well, this blog series (and indeed Whose Shoes?) is not about being politically correct. It is about telling real stories in people’s own words. Walking in their shoes.

I did however, correct a few typos etc.  Again, Chris left it to me. But does cosmetic editing mask the very real problems that many people with dementia face in everyday life? We would love you to leave comments about this below…

My young onset group meeting

Chris RobertsIt’s something that I used to be very apprehensive about attending .

The first meeting I attended made me very anxious, wondering who was going to be there, what age etc and these days I don’t like change, I don’t like anything that interferes with the norm.

I went into the first one moaning and whingeing!  But I knew deep down I would probably enjoy it, I had to ignore what the Alzheimer’s was telling me.

Luckily the meeting was held in the back room of a pub I used to frequent. So far not too bad, all the apprehension was starting to lower the wall I had built up.

The wife and I walked in, I chose a seat near the door as to ready my escape if needed ( I read this back and it sounds quite ridiculous, but am trying to be honest about my feelings, I do know that sometimes my insight on things is becoming quite difficult.)  They had a guest speaker talking about benefits etc, I looked around trying to single out any diagnosed from carers, impossible to do, which made me feel calmer again.

Sitting quietly and just listening you start to realise the help everyone gets from these meetings, listening to carers and spouses sharing experiences  and realising they are not on their own, these group meetings are just as much a help to everyone.

The room soon starts to split and sufferers, diagnosed, start to talk together. Bonds for life are quickly formed because we understand more than anyone ever could what’s happening to us when we share, listen and help one another.

A problem shared is a problem halved ! After talking and sharing our own expectancies to one another, you start to feel  like a person again and not just an illness. But more importantly you don’t feel alone any more!

Thank you Chris for your honesty and telling us about your young onset dementia group and the invaluable support it brings. We hope that sharing your story and tweeting will continue to help you meet like-minded people and find comfort, practical support and enjoyment. Just as dementiachallengers.com brings a wonderful resource, particularly for family carers, I am sure the new dementiaallianceinternational.org will unite people living with dementia. And #dementiachallengers will provide the gel, the boats, or whatever combination of metaphors are needed to bring more and more people on board… 🙂

And, if there is anyone out there who likes Chris’s blog and is able to help people living with dementia share their stories a little wider… for example, at global conferences, please look no further:

Update: Chris and I were both delighted that his guest post was featured in the ‘Pick of the blogs’ by Clare Horton in the Guardian.

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About Gill Phillips - Whose Shoes?

Passionate about personalisation in health & social care. Creator of Whose Shoes? - an imaginative approach to helping people work together to improve lives. http://nutshellcomms.co.uk
This entry was posted in Blogs, community engagement, compassion, dementia, education, Guest blog, personalisation, social media, well-being and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

8 Responses to In the shoes of Chris Roberts … | Living with younger onset dementia…

  1. Maureen Grove says:

    Really interesting and thought provoking piece. Chris has brought to light the importance of sharing experiences with others. The most difficult step must have been finding the courage to join this group, but now that’s over, I hope he finds (and gives) lots of support there. Best wishes, Chris.

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  2. Mishna says:

    It is really helpful to try and see dementia from another dimension. Unfortunately I was never able to explore Dementia from my mum’s viewpoint, by the time she was ready to talk about it she was already experiencing denial.

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  3. Thank you for your comments. Yes, hopefully Chris will continue to find the group supportive and of benefit to everyone. Sorry to hear about your Mum, Mishna. x

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  4. I would also like to emphasise the very real need for people living with dementia to be financially supported to be able to have an equal part in major dementia conferences, particularly international events. How can these events be effective without giving prominence to the views and feelings of people who actually live with the disease? Any comments on what would make a difference here very gratefully received.

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