A day living with dementia 

Norrms McNamara, founder of the Purple Angel dementia campaign, holding dementia awareness posters

Norrms McNamara, founder of the Purple Angel dementia campaign - Credit: Submitted

As I awake every morning, always grateful that I have, it only takes a split second each day to realise this is not a bad dream, or something I have imagined, I have dementia!

Straight away the pressure builds and seems to hide behind my eyes.

It’s hard to explain the frustration I feel, because I am usually at my best first thing in the morning and deteriorate as the day goes on, and yes, the pressure, that awful pressure behind my eyes and inside my head is always with me.

I go about my business as best I can, and with the help of my wonderful angel Elaine, I have breakfast, sometimes in silence, sometimes not, all depending what kind of night I have had.

I need help showering as I once tried to clean my teeth with my razor - not recommended - and put shaving foam in my mouth instead of mouthwash, also not recommended!

But between us we get there and eventually I am showered and dressed but the 'pressure' is still there and rising. I am sure the pressure I feel is the worry of having dementia.

The frustration runs through me at times like electrical jolts, so much so I sometimes feel I could just run and run and never stop running. I could scream at the heavens until I was hoarse and jump up and down until I collapsed.

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I sometimes wonder how I don’t go over the edge completely, like when I sometimes stand there talking to a friend, only to realise I have already told him this and he is just being polite.

Lewy Body’s dementia is so very different to Alzheimer’s, I wish some would understand this sometimes. I see people looking at me and thinking 'is that him with dementia? He seems OK, he talks OK, he walks OK,?'

What is so very hard to understand that dementia comes in many stages and what they are thinking about is the late stages.

And so the pressure builds!

As the day heads towards evening I can also see the frustration in Elaine’s eyes, the sorrow behind them and the day’s events wearing her down, and yet, never a moan or a gripe, just a smile and a look of kindness.

Every evening meal is the same ritual, I have to now wear a napkin while I eat, the knife and fork in the wrong hands and sometimes missing the plate completely, becoming more argumentative and restless.

Nothing seems to be right sometimes, I like salt, I don’t like salt, I like pepper, I don’t like pepper, I haven’t enough, I have to much, and on it goes.

And still the pressure builds.

There must come a point, some evenings, not all, where I completely lose all sense of reality without realising it.

Elaine says it can happen gradually and sometimes quite quickly. I am not aware of this happening and after that anything can happen apparently and usually does.

The pressure is now at boiling point at this stage.

And then, I awake in the morning, and just for that wonderful, grace saving fleeting moment all is well, and I haven’t got dementia, until it all comes flooding back to me, and the 'pressure' builds once again. 

But these are the cards we have been dealt, and we will cope with is best we can, no choice really and I am still here doing this, so have to be very grateful for everything.