Today I have the honour and the pleasure of hosting a blogpost that gives real insights into the life of someone living with dementia. But surely, I hear you ask, this whole “in my shoes” series is aiming to do this? Well, it is building the big picture of dementia from many different perspectives – all adding huge value – but this is the first blogpost actually written by someone living with dementia – and I hope we will have more.
This is the most important perspective of all.
Norman (or Norrms as he is known) is a rather special person. While others are planning and researching dementia-friendly cities, Norrms and his pals in Torbay are getting on and doing it! Such a practical approach – just walking into public places such as shops and cinemas, talking to them and leaving some leaflets – and then following up to see if they understand and are prepared to do what they can to be
“dementia-friendly”. This action-focused approach gives Norrms and his family, who support him all the way, a very special #dementiachallengers award 🙂
Norman’s latest book Silent Voice`s “My Battle With Alzheimer`s Rages On” , published a year ago, shares his story from the time when he was diagnosed with Early Onset four years previously. He has also met with the Prime Minister, David Cameron… but you can read the full story on Norrm’s website. This is what he has written for us…
SECRETS AND LIES
Sometimes I sit here and evaluate my life living with dementia so far and how we have dealt with it. Sometimes it’s a good outcome, sometimes not; it depends on my mood I think! There is one thing, no matter what I think about, is the Secrets and Lies that’s connected with this awful illness dementia. I think that’s why I campaign as hard as I do, because the more I learn, the more questions there are, this is what I mean…
When I was first told I had Dementia I was advised to “Use it or lose it” and sent on my way!! If I had just been diagnosed with Cancer or HIV would they have said the same? What were they holding back? What SECRETS did they hold about this disease? As time went on I realised that not only was there nothing in place for somebody like me aged just 50yrs old with this kind of diagnosis but nobody talked about it openly?? WHY NOT? Was that a SECRET too? All I learned about this awful disease I learned via the computer but here are something’s I had to find out as time went on.
1. Sometimes when I walk into the room and see my Angels face, drawn with worry and trying to figure out the best way forward for the future, what am I suppose to say? Do I say I am sorry? Do I pretend I haven’t seen her? Do I lie to her and say everything will be ok when quite clearly its not going to be? Nobody told me this would happen!
2. Never having lied to any of my grandchildren, when they ask “Grandad, are you going to die soon?? How do I answer that one? How do I look them in the eye and say “Not to worry, I am not going anywhere “ How do I look at their wonderful innocent faces and tell them that I might not be here to see them grow up, or see them married and have children of their own? Nobody told me this would happen?
3. When my Angel holds me so tight and whispers “What am I going to do without you?” How do I answer her? How do I calm her fears and trepidation? Nobody told me this would happen!
4. The nightmares, the hallucinations, the constant pressure of always being in the wrong, getting nothing right, dates, times, remembering holidays and places I have been!!
WHY DID NOBODY TELL ME THIS WOULD HAPPEN??
ALL THESE SECRETS AND MORE!!!
WHY ARE THESE THINGS NEVER DISCUSSED??
Well, where do I start??
1. It’s only an Age related disease? Err excuse me????
2. It’s contagious? Yes some people walk away from me as if I have the Bubonic plague.
3. I don’t LOOK LIKE I have dementia?? Please explain to me “What does somebody “look like “with dementia.
4. It’s no use talking to him/her as she/ he won’t understand you?? Please tell me how do you know that?? When did you pass your degree in matters of the mind?
5. Just dress them in anything, they won’t know ?? Again, how do you know this??
6. A member of my family has a “Touch “of Dementia, that’s just like saying my sister is a “Touch Pregnant!!!
7. Dementia comes on suddenly!! NO IT DOESNT!!! Its actually a Critical chain of events that lead up to the later stages, its just all about becoming aware of the signs.
8. And the biggest one of all, its all about losing YOUR MEMORY!!
NO ITS NOT!!!
It’s about losing your lifestyle skills, your ability to walk properly, to talk properly, to count money and understand the simple tasks of life which you wouldn’t normally give a second thought to. Its about putting the milk in the oven and the hot cup of coffee in the fridge!!
SECRETS AND LIES, EVERY ONE OF THEM, with a lot more besides.
My dear friends, until these secrets and lies are stopped, until the truth comes out about this awful disease and until each and every one of us stand up and shout`s that enough is enough!! We will struggle to overcome something we are in the dark about. No more should we hide in the shadows and whisper about Dementia. No more should those of us who have this disease be looked at as if we have two heads!! And no more should this disease be the Silent Enemy! Because I for one will not go quietly and will campaign long and hard until there are no more SECRETS AND LIES, Just
TRUTH AND HONESTY !!
Norman McNamara : http://dementiaawarealliance.wordpress.com/
Thank you for allowing me to post this on your wonderful site, i hope it helps, and if you want me to post every so often to hopefully help pepole understand what its like to actually live with this awful disease i will happily do so, thank you and God bless, Norrms and family xxxxxxxx
Thank you Norrms and family! As I said in the blog, it is an honour and a pleasure to host your excellent guest blog. And yes, you are very welcome to take part in the series in any way you like. You are an inspiration – and I’m sure particularly so for other people living with dementia. Perhaps you’d like to tell us more about the work you are doing in Torbay – so hands-on and so practical. And how about your meeting with David Cameron?!
I co-facilitated a wonderful AwayDay yesterday with Dr Karim Saad’s team (@karims3d) in Coventry. I was working with “partner in crime” Anna Geyer from New Possibilities (who does wonderful graphic facilitation – recording in words and pictures!). We were testing out some new content for my Whose Shoes? discussion tool, with the focus on both personalisation and dementia care. We will certainly build in some of the insights from your powerful “Secrets and Lies” blog so thank you again. Dr Saad leads an award-winning Early Onset Dementia team in Coventry and they have a long history of service user engagement – but the more we share good practice between areas and “join the dots” across the country, the better! I mentioned your work to make Torbay a dementia-friendly area and they were “well impressed” as my kids would say!
I have just found you on Twitter (@NormanMcNamara) and am aiming to help get you a LOT more followers! It is SO important for people (everyone!) to understand more about what you are having to cope with – and share your pioneering “can do” spirit. We are using the #hashtag #dementiachallengers – because that is what we are! A fab group of people from very different perspectives (Whose Shoes!) with the common goal of trying to make a real difference. Do let us know if there is anything more we can do to support you and your friends. Very best wishes Gill xxx
Thank you Gill, i will send you a blog of where we are at the moment regarding Dementia friendly communities and also my meeting with the PM next week, meanwhile this is what i posted yesterday after our meeting on Moinday, hope you like it xxxxx xxxxxxxxxxx
Hiya all, just to share the news that after yesterdays meeting with Tor 2 (Please click on link http://www.tor2.co.uk/ ) they have agreed to put the information we gave them into their (“Toolbox Training) which means every employeee “” ALL 365 of them !!!!!!! will be Dementia aware in the next couple of months or so. This means that the eyes of all all those on the gardening, cleansing, road sweeping and recyclying will be able to spot somebody if they are in distress regarding Dementia. They all have two way radios!! so this could actually save lives !!! I am so pleased !! Right !! back to my holiday LOL LOL Norrms and family xxxxxxxxx
Beautiful, heartwarming! Keep on going, Norm…put the message …..& the truth about dementia out there.
Reblogged this on DEMENTIA UNRAVELLED and commented:
From the horses mouth ….( strange expression come to think of it !)
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Hi Norrms… Yes, yes, yes! I hate the lying and perceived need to cover up the dementia diagnosis. It’s a medical condition – a disease – not something you’ve brought about yourself or in some way less worthy than any other disease.
I hate when those with dementia are “baited” – often by their nearest and dearest – “ha ha, you don’t remember that do you” – and similar.
I do think the idea of “use it or lose it” is not right. It seems to me that those with dementia need to rest their brains, give them plenty of recovery time, sleep long and well, not be interrogated for too long. How do you feel about becoming “over-tired” or involved in a long episode of conversation?
And as you say, this need of many to put some sort of artificial positive spin on the topic, “it will all be all right” – we humans need to know the truth not shun it, not live in a fond dreamworld with reality kept in a secret chamber only to be visited on the rarest of occasions.
Best wishes for your further campaigning
Thank you Janel. I have just posted a second powerful post by Norrms in the series and we will also feature more about the dementia campaign they are running in Torbay. Please do follow the blog series – also follow #dementichallengers and @whoseshoes on Twitter. Best wishes Gill
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I am so inspired by Norms. He truly Rocks and is a role model for us all. Thank you so much Norms for doing all that you do – and you do so much.
This is a wonderful piece and it will help so many people dealing with this dreadful disease!