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
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… 🙂