ADI
Roundtable meeting
London
20/09/2013
As I walked into the huge room in the Chandos Hotel, looked at the HUGE conference table with all the microphones stationed at each of the 16 places, overshadowed by the biggest chandelier I had ever seen, I must admit to feeling a little nervous. Not because I was worried about who I was about to meet, but because, as you know, I am no Academic, left school with no qualifications and have this awful disease Dementia. I was actually worried about the terminology that might be used by the best minds in the UK and globally regarding dementia, I was so worried I would`nt be able to understand half of it, my goodness, how wrong I was.
The people who surrounded me not only made Elaine and myself so very welcome, but spoke in clear, plain English, and more importantly, STRAIGHT FROM THE HEART !! I suddenly found I was surrounded by like minded passionate people who only had one thing in mind, the improvement in services for carers/caregivers and those like me, who have Dementia. Gone were the boundaries of job status, gone were the boundaries of where you came from, we were all there, as one, to discuss how to take things forward and not dwell on the past.
It was such an honour to be asked to attend, and they included me in every step of the meeting, right from asking me to start the conversation after questions were asked, right up to asking me to have the last word (Could have been a big mistake LOLL but I kept it short for once) We talked about Paid carer workers, unpaid care workers, family carers/Caregivers. We even came up with a new word so they would ALL be included in the same sentence and that word was “CAREFORCE” (Wish I had thought of that one!!)
Then we went on to talk about the importance of “Inclusion and Engagement “of those, like me with dementia, in every step of the way and repeated the saying said a while ago “Make no decision about me, without me “We also touched on the need for more respect and pay grades for carers for the wonderful job they do. Most areas were covered and we all got a chance to have our say and give our opinion on what was the most important thing to us. The whole meeting was videoed and pictures were taken which I hope to post as soon as I received them.
I must give a special thank you to Roger H Baumgart CEO of Home Instead Senior care and also Marc Wortman CEO of Alzheimer’s Disease International who kindly asked me to attend this meeting, I like to think, I had my say, hopefully made a difference, and I am totally sure they listened, as I hung on their every word, the meeting was that good!!
Hopes for the Future?
I am hoping all what was said at the above meeting will be taken back, written into polices, and presented to all governments worldwide, to show that by INCLUDING those that are able to, with dementia, in these meetings is the only way forward.
Best wishes, Norrms and family xxxxxxxxxxxxxxx
FOOTNOTE
I must give a special mention of thanks to Mark Mc Glade of Home Instead Budleigh Salterton, who organised all our travel arrangements and stay at the Hotel. It must have took some organising, thank you so much Mark !! xx
Anita moran September 21, 2013 at 8:08 am
Well done norms. you really are an inspiration to us all and i admire you and elaine so much for all the wonderful work you do x
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linda brannan September 21, 2013 at 8:35 am
Great work to benefit everyone affected by dementia around the UK and worldwide ,bless you norms ,Elaine and family …..god chose you to be his voice ,I’m grateful n so is my dad smiling from heaven xx
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Kim September 21, 2013 at 8:43 am
As always Norms, thank you for speaking up for us all x
Love to Elaine x
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Caroline Dearson September 21, 2013 at 8:53 am
Well done Norm. With people like you, and ourselves, that have lived the journey, and in my case watched a much loved dad go on the Dementia journey, we can help to make a differance. In trying to change the NEGATIVES we found ( and sometimes still finding) to complete POSITIVES. This is what we are doing in our area, and trying to achieve. We saw there were gaps that only someone with Dementia ( like yourself ) or thier family could see. United we can help to improve the care for future people with Dementia and their families. Our Foundations mottos are NEGATIVE’S to POSITIVE’S and AWARENESS,AWARENESS,AWARENESS. Keep up the fantastic work that you and your lovely wife are achieving. All in the name of Dementia
Kind Regards
Caroline Dearson
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September 21, 2013 at 10:55 am
So proud of you Norm, and so glad they listened to your input.
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William Charles Wilson ( Bill ) September 21, 2013 at 11:13 am
Ada & Bill
Hi Norms & Elaine You have made it THE WORLD LISTENS CONGRATULATIONS you have a GLOBAL VOICE on DEMENTIA Cheerio Bill
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Elaine Attree September 21, 2013 at 3:43 pm
I am glad it went so well. It is most important that there is a joined up thinking group, who can help move things forward. I am glad you are a part of that process. You are an inspiration to us all. x
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Roger Stringer September 22, 2013 at 11:37 am
Well done Norm,lots of us here in Torbay support your brilliant work ,keep it up.
RogerStringer( Last YearsCivic Mayor)
GOD BLESS
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Cynthia McCafferty September 22, 2013 at 12:24 pm
Thank you so much for attending the event, your insight and perspective was so valuable.
Cynthia
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Jessie September 22, 2013 at 4:38 pm
Thankyou so much for joining the discussion and sharing. I am moved by your feelings of no walls in the room. I am with Home Instead and had the honor of attending the Washington DC forum the day before, and Sandy Halpern, a gentleman who attended and also has the disease said the most promising change is people affected by Alzheimer’s and their families are finally feeling they can live without stigma and not be invisible, Coming out of the shadow and speaking out, speaking openly will bring the change. Thankyou for your blog, and being willing to be visible on the journey. You are making the difference!
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Val Baggott September 23, 2013 at 8:53 am
You are such a wonderful advocate for everyone touched by dementia, how could anyone not listen to you, the future of dementia will be shaped by your voice as you touch the hearts of us all. Thank goodness for you and Elaine xxxx
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Alison Hernandez September 23, 2013 at 11:15 pm
Wow! Sounds like a meeting that was worth the effort. I love Careforce – a force to be reckoned with, just like yourself. There is no ignoring a force!
Keep on keeping on.
Love to you both
Ali xx
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September 30, 2013 at 3:57 pm
Brilliant Norms.
You don’t have to be an academic or have qualifications.
Just talk from your experience and with passion as you always do.
You tell it as it really is and all power to your elbow!
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