What do I want from World Alzheimers Day?

It's 21st September and not many people will be aware it is World Alzheimer's Day.

Then again it is also International Day of Peace, Minature Golf Day and Pecan Cookie Day to name a few.

We have a responsibility to shout out and make people aware of these days and use them to our advantage - whether its a day celebrating something fun, as we cant be doom and gloom all the time - or its a day to raise much needed awareness.

This is where it lies upon us to speak up on World Alzheimer's Day and spread awareness.

Question - What do I want to spread awareness about?

Where do I begin?

Dementia is the long goodbye, my mum is dying and no-one can explain to me how she is.

Is she comfortable? Is she in pain? Is she sad? Is she content? How can we help her?

As the Dementia progresses you start to notice parts of mum that are dying - the ability to walk unaided, the ability to talk, the ability to enjoy simple things as her favourote TV programme because she can no longer focus on a television.

Every stage is diffcult to cope with and yet you know the worst is still to come.

No-one has ever sat me and my family down and explained what to expect.

No-one ever sat mum down and talked her through what to expect or what to think about.

I put on a brave face for me, mum , dad and the family but please don't ever mistake that for how awful things are. Unfortunately you can't spend every day being sad about what's happening to mum - thats not good for anyone. All I ask is that if you get me on one of my bad days, then I'm sorry for my rants or bringing the mood down, let me vent and I will be OK afterwards.

What I struggle with the most is how awful this illness has been on mum and dad. Dont get me wrong it's been and is an awful experience for myself but I HATE what Dementia has done to mum and dad.

It has stolen their dreams.

My dad is left alone in his house without his wife and my mum , although surrounded by people who care for her, is alone in her bedroom and doesn't have the love and support of her husband.

This has been forced on them by Dementia and the system.

Many times before mum went into the care home, alot of conversations from people surrounded 'have you thought about a care home for mum'

Care homes absolutely serve a purpose 100% and credit to everyone who works within this industry, afterall mum was one of them.

What I struggle with is a care home being looked at as an easy fix. Both mum and dad did not want this, yet it was forced upon them.

'You need to think about yourself'

Such a heartfelt statement but it's so hard to do when your mum is living and breathing and I cant figure out how to help her.

There is an ongoing battle in the Dementia world with the phrase 'live well with Dementia'. i absolutely 100% want people who have a diagnosis to be empowered speak up and spread awareness with how they are coping. They deserve to to show the world how they are coping.

Unfortunatley not everyone can have such a journey and we NEED to be allowed to talk about this also. We are fighting for awarenss as a community and we CANNOT afford to have divides within the Dementia community.

It neesd to be understood that not everyone can live well with Dementia and in these cases we the carers have a responsibility to speak up on our loved ones behalf.

Can we learn from one another? Why does one thing work for someone and not another?

What i think is the most important thing to do is get involved. Write a letter to your MSP/MP , attend that Parliamnet group, write a blog, attend as many events as possible. What is needed is US the people living it to start networking and learning from one another, in turn we can educate the Dementia world and at the same time those who are not involved in the Dementia world.

Our families experience is different from your families experience and each story is just as important.

I would like to complie a document of people's experiences - one sentence, positive, negatives, a full A4 page, its your story and you can tell it how you wish. I would like to present this at the next Parliament CPG I attend as not everyone can attend such events but if you let me I can be your voice and we can hopefully implement chnages for the better.

If we the carers can help implement chnages for care and support then maybe that will free up sometime and funds to concentrate on a cure?

If you are interested in becoming involved then drop me an email on mail@butalzheimersisforoldpeople.co.uk

I'm doing it for mum, who are you doing it for?