Speaking up to make a difference when you’re living with dementia

I accepted my dementia diagnosis from the word go, there’s no point moping. I have mild memory loss, and I know I’m not going to get better, but I’m on medication and everything seems to be going OK. 

I try to keep my brain as active as I can.

I’m a keen parrot breeder, I hand-rear the babies from an egg. It gives you something to do every day, it gives you motivation.

I also have brilliant family support, couldn’t ask for any better.

Worrying time 

I go to fortnightly Zoom meetings through Dementia NI, where we’re doing a children’s app with universities. It asks different questions about dementia, to make them more aware of what’s happening out there in the world. 

At our monthly Alzheimer’s Society meetings on Zoom, we’ve been talking about how the price of fuel and heating affects us. It’s kind of a worrying time.

The price of food is increasing, everything seems to be increasing, but people’s money isn’t going up! 

I contributed to an Alzheimer’s Society blog post about energy prices. My motto is that if you have anything to say, say it. If I think people are suffering because of the price of energy bills, I’ll speak up.

People like us have a voice, and organisations like Dementia NI and Alzheimer’s Society help us with that.

I keep in regular contact with my colleagues with dementia. We support each other. A wee call seems to cheer people up if they’re down in the dumps.

Some groups are going back to face-to-face now. It’s nice to see people’s faces again and have a bit of a joke and a laugh.

Although we’re not out of the woods yet with COVID – you still have to protect yourself to the best of your ability.

No shame 

Dementia is nothing to be ashamed of – I didn’t buy it! It’s just been handed down to me, and I have to accept it. If you can’t accept it, it’s going to beat you.

I’m motivated to help people with the same result as me, who aren’t as open or aren’t accepting it.

If I knew someone was getting diagnosed, I could be outside in the waiting room to tell them that it’s not the end of the world. Or they could be given my contact number. I think that would be a good idea.

Everybody is equal in my eyes. It doesn’t matter who you are or what job you have, everybody should be fit to use their voice and express their opinion. I want to make people aware that they have a voice.

I hope that someone reading this might think, ‘Fair play to that man, maybe I should speak up more.’