In the shoes of … Norman McNamara (2) | How it feels to live with dementia

I am delighted that there was a strong response to yesterday’s simple blog – nature photos to suggest that yes, we all want to have quality of life and the chance to get outside on a nice day, regardless of age, disability or state of mind.

And here is someone with dementia  who is living life to the full: our second blog from Norman, a.k.a Norrms.  Norrms and the Torbay Dementia Action Alliance are doing innovative, campaigning work to make Torbay “dementia friendly” and this will be the subject of a future blog.

But in the meantime, a distressing story; Norrms tells us a little about the progression of his dementia and how he feels about it…
Who would have thought all those years ago how prophetic that song would become for many of us?

Earlier this week my Dr and CPN (Psyche nurse) decided to double my Exelon to 3mgs to take twice a day as well as my Ebixa tablets I already take. This is a worrying trend. I was only given the Exelon to take with my other meds a month ago and now they deemed fit to double it already. Now don’t get me wrong, anything  that helps keep me well for a bit longer is all GOOD!! But I am at that stage where I still know most of what’s going on around me, and they must have doubled my meds for a reason and not just for fun!!

I wonder how many others in my position are going through this same uncertainty and worrying about the future. I found when they visited me earlier this week I sat there opened mouthed as Elaine explained to them how I had been, as I have absolutely no memory of it!! To be sat there hearing about things you have done and said and not remembering a thing is, without a doubt, one of the worst things that happen.

My mind starts to race asking questions at every turn. “What ifs” spring into my mind one after another and before I know it I am almost having a panic attack!! All the worst possible scenarios involving Elaine and my family race through my mind and I feel as if I want to scream STOP!!!!

Eventually people around me hear me breathing deeply and see the worried look on my face. Without more to be said Elaine looks at me, smiles and just nods, which I know means “All will be OK”.  I smile a confident smile back but deep inside, somewhere deep within, is a fear that one day I will say or do things that will hurt my wonderful family, and for that Dementia I HATE YOU !! I HATE YOU more that any written or spoken word could ever explain!! HOW DARE you make me feel like this, HOW DARE YOU put my family at risk like this!! I have never hated anything in my life as Hate is a very strong word, but the hatred that wells up inside of me for you, YES YOU DEMENTIA, will I promise be fully directed at you for as long as I have breath in my body, and never at my family and friends!!!

And come the day when a cure is found, and I sit there with the biggest smile in the world on my face, the hatred for you will disappear from my heart and be filled again with love and laughter, and the memory of you will be gone and long forgotten !!!!
Norrms and family xxxxxxx

Norrms’ new video:

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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
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4 Responses to In the shoes of … Norman McNamara (2) | How it feels to live with dementia

  1. Thank you so much for postingthis and hope it helps xxxxxxxxxxxx

    Like

  2. Pingback: In the shoes of … Norman McNamara (2) | How it feels to live with dementia | Dementia Aware Alliance

  3. Pingback: Round up of “In my shoes” – Dementia Awareness, Week 10 | Whose Shoes?

  4. Maya Soni says:

    Hi Norrms, I’ve read some of your posts and news items before, and just watched your great video – thanks for continuing to do all that you do, you’re a star. All the best to you and your family, Maya Soni

    Like

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