Norrms McNamara: It's amazing how a little reassurance can lift the spirits

Torbay Weekly

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

As I write this, I feel as if I am being disloyal to my family and friends but believe me I’m not.

It’s just what happens deep down inside someone who has been told they have dementia.

As I have stated so many times, I have the most wonderful supportive family a man could ever ask for.

Even though I have heart failure and dementia, I still regard myself as the luckiest man alive as not only are my children the best ever - aren’t they all - but my 'angel' wife had more than 30 years in the care service, so I have the perfect person looking after me as a full-time carer.

So, you may ask, why do I feel so 'hollow' inside sometimes?

I must firstly state that I say sometimes as usually my disposition is a very happy one but when the concrete overcoat descends - depression - and weighs me down with a heaviness that’s indescribable, the emptiness I feel inside is horrendous.

I have always said being told that I have dementia is just as bad as having it but I wouldn’t have changed that decision as all my family are now well prepared for what’s to come in the future.

I said earlier about being disloyal, well, sometimes I actually feel guilty for having this awful disease as I can see the hurt and frustration it brings my family and how they must wish for a different outcome.

Would it have been so different had I not been told? Would the nods, winks and knowing looks have made it any easier? I think not.

The emptiness I feel inside sometimes is akin to feeling soulless, if there is such a word.

It’s a feeling of desolation and helplessness that overcomes me in waves and waves. I want to scream and shout 'why me?' but if I did that, I would feel so selfish because of all the other people who are a lot worse off than me and a lot further down the line in this illness.

All this goes round and round in my head and even though I know it makes me so much more frustrated and feeling underwhelmed, unfortunately I have lots of time on my hands to think about it now.

So what of my future and family?

My future I now take day by day and being the eternal optimist, I am I enjoy what I can while I can.

And if there is an upside to any of this, I am probably spending more time with my family and friends now that I ever did.

I am not missing out watching my grandchildren grow up or events such as their school Christmas plays - and that’s the most precious thing to me at the moment.

But the feeling of emptiness and desolation still descends at times, as if reminding me of my future, and of what’s to come.

The 'concrete overcoat' covers my whole being and drags me to places that I would never mention to a living soul, sometimes lasting for hours or days.

This is when 'the hollow man / woman' needs a smile, a wink or even a cuddle. Just to show them that someone still cares and that someone is also in that corner fighting with them.

You will be amazed at how much a little reassurance lifts the spirits, even if sometimes they don’t always show it too well.

I hope by writing this, it will help loved ones and carers alike understand a little bit more about how a person with dementia feels.