Norrms McNamara: The loneliness of dementia 

Torbay Weekly

Norrms McNamara, founder of the Purple Angel dementia awareness campaign:

Imagine this: You have the most loving, supportive family on your side and a wealth of friends that are with you every step of the way, yet you still feel like the loneliest person in the world.

Quite a statement I know, but this is just one of the many ways dementia can make you feel.

I am so lucky in many ways yet sometimes I feel as if nobody understands.

I just know that’s because it must be so very hard for them to put themselves in my shoes for a day.

To be told that you have a brain-wasting disease and at the moment there is no known cure is, without doubt, one of the worst things anybody can be told.

Sometimes I sit in my own little world, remembering things from days gone by.

I remember my old house as a child and how I would walk up the backstreet hoping it was chips and pea soup for tea.

As I walk in I can see dad sat 'in his chair' his feet in front of a roaring fire.

As I look across the room, I can see mum, busy at the cooker frying his sausages for tea, he always got his tea first as he was a hard-working man, my mum always said to me.

My wonderful grandmother would be there to visit, bringing her homemade pies and cakes ready for the weekend feast.

We didn’t have much but we were very rarely hungry.

Then I try to remember back to where I first met my 'angel' Elaine and tears fill my eyes.

It’s like trying to see though a very thick fog and every now and again the fog clears just a fraction and I see glimpses of Elaine and me walking hand-in-hand around the reservoir on a summer's day, the smell of freshly cut grass and the blue clear still water with gentle ripples dancing across the top, all following each other in turn until they eventually run out of strength... reminding me that life is very similar and eventually we will all slow down.

My mind then shifts to try and remember later and suddenly I can hear children’s voices, screaming with laughter and as I look through the fog I can just barely make out me pushing the swings in turn and trying to get them as high as possible.

Then nothing! A blackness envelopes my brain as I try with all my might to try and remember something else.

The pain is etched on my face as I screw my face up tight to try and remember just one more little thing - but not tonight, that’s it for tonight, memories gone, memories of times gone past which are slowly but surely being taken from me as I sit here.

How cruel this disease is.

As I look across the room I see my darling Elaine giggling at something on the television and my mood lifts, but the loneliness stays in the pit on my stomach.

How can a man or woman have so much yet feel so desperately lonely?

The only answer is because of dementia and the fear of losing the battle against it.

Not only does the dementia win but it takes with it all your precious memories, hopes dreams and locks them up in a very dark place.

Well, not my memories, and not my dreams and hopes for the future. I won’t allow it, and as long as I have breath in my body, I will fight this disease.