Suffering or Living Well???

You have Dementia, you have two options -

A. Live well with Dementia

B. Suffer with Dementia

Lets discuss Option A.

You have Dementia and probably cannot work anymore - is that living well? Yes working isnt the be all and end all but it gives us our independance to be ourselves, earn money and do things we want to do when we want to do them.

But OK just beacuse you cannot work anymore doesn't mean you can't still live well with a Dementia diagnosis, right?

It's time to take up that new hobby, read that book, volunteer?

It's time to spend more time wth family and friends.

You are still able to communicate and travel - yes it can be difficult at times but we find ways to overcome this.

Why wouldnt you want to say that you live well with Dementia? You should be allowed to talk about how you are living well with your diagnosis.

Lets look at Option B

You are suffering with Dementia or you are a Dementia sufferer.

Is this wrong to say?

No, you have had to give up your job that you have loved all your life and worked hard to get where you are because Dementia came a knocking.

Is it wrong to say you are suffering with Dementia because you are no longer able to make a cup of coffee without aids?

Is it wrong to say you are suffering with Dementia as you are no longer able to drive and your freedom to go wherever you want whenever you want has been taken away?

Is it wrong to say you are suffering with Dementia as you are in the later stages, after being diagnosed five years ago, and you can no longer walk, talk or eat without the help of others?

Is it wrong to say you are suffering with Dementia as your life has been turned upside down?

The answer? No.

I dont believe you are wrong to say you are living well with Dementia or you are suffering with Dementia.

What I believe is wrong is to not allow those living with a diagnosis to be honest about how they feel. Every diagnosis is different and we cannot all be the same.

What do I think we need to do?

Truthfully, I don't know.

What I do believe is as much as I read about we shouldnt be using language such as Dementia sufferer as to give a negative view on Dementia we cannot continue to only use live well with Dementia as I strongly believe this gives a negative view also.

It continues to allow people to believe that Dementia is just about forgetting things and they don't take it as serously as they should.

I am a member of many online forums and so many people are struggling with their Dementia diagnosis from the person with Dementia to the family and friends helping that person.

Lets stop arguing about whether we should or shouldnt use 'live well with dementia' or 'suffering with dementia' , lets just have a dementia diagnosis and recognise we all have different journeys.

Dementia is killing my mum and she certainly isn't living well with dementia - her voice deserves to be heard also.

I refuse for people to believe she lives well with Dementia.