How can you help when you haven't asked us?

Torbay Weekly

Help us, to help you, to help us.

I am sorry if that seems confusing but I promise it all will become clear.

We have come so far in the last few years regarding dementia, fighting the good fight.

So much good is being done by so many, so much so, that if it wasn’t, I truly believe this country would come to a complete standstill if it wasn’t for carers, nurses, care homes and, as a person living with dementia, I will always be eternally grateful for that.

But when we talk about fighting dementia what do we mean? What do we really mean?

I will explain...

May I ask all who read this, to get a true idea of what it’s like to fight dementia, how many of you have actually sat down with someone who has this awful disease, looked them in the eye, and asked: “How do you fight this godforsaken illness?  - please remember not all of us are in late stages.

I will let that sink in for a minute as I am a firm believer that if you don’t ask how we fight this, if you don’t sit down and talk to us and ask questions about how we try and cope and how we feel about the future, what happens after we have had hallucinations and 100 more questions, where applicable, how are you ever going to know how to really fight this disease alongside us?

My time will come, as sure as the sun sets, if they don’t find a cure for dementia, that I will be unable to write things like this to try and help.

I hope that 10 years of blogging and recording YouTube training videos will help you all in the future to understand at least some of the things we go through.

But unless you start to talk to us, how are we going to get you to understand how we feel and how then you can do something to help us?

Hence... 'Help us, to help you, so you can help us'.

It’s a great help and so reassuring to us when people actually talk to us and ask us about our disease such as what type - the most important question in my humble opinion.

Then we can tell you to try and make you understand so you can help us at a later date hopefully.

Ask us about our loneliness even though we have friends and a loving family around us.

Ask us how we can get up after a night of hallucinations, and even though we have flashbacks, we try and carry on best we can until we start to sundown again.

And please ask us about our hopes for the future and what we would like to see change in the world about dementia.

If I am lucky enough to be asked how I cope, I always reply: "When I get up in the morning I put my boots on and not my slippers!"

Oh, if it was really as simple as that, I wish, but I hope you get the idea and we can start to fight dementia head on knowing that what you are doing you have got straight from the horse’s mouth.

People with dementia don’t want to hear about plaques and tangles - there is a place and time for that - but what we want to hear is how you’re going to help us in the future, because believe me, if the roles were reversed I would help you in a heartbeat.