Joy’s Story

I’m the eldest of five children and was born within the sound of Bow Bells, which makes me officially a true cockney, but I traded my cockney accent for an Essex one which I still have today. I met my husband Tony in Essex. He’s put up with me for 40 years, I’m hoping that won’t change now that I have dementia. We have two fantastic sons and two delightful granddaughters.

I was diagnosed with Alzheimer’s Disease on my 55th birthday. After two months of depression and feeling suicidal, I realised I had a choice to make. I could stay on the sofa and give in to the dementia, or I could embrace the future and set about bringing change. Two years down the line, I’m pleased I chose the latter. Although it hasn’t been without its difficulties, the good times have far outweighed the bad. My life has been transformed. I feel it’s a privilege to be trusted with other people’s stories and experiences.

The opportunities I’ve had to raise awareness and help to reduce the stigma around dementia have been remarkable. I guess it helps being an outspoken person. My motto has always been, “have the courage of your convictions”. If you combine energy with passion you’ve got a force to be reckoned with.

Some people might see my enthusiasm as bolshiness, but I have such a deep desire to help people understand this nasty disease, and more importantly help people to live well with it. So if challenging MPS and health secretaries and European bigwigs is being bolshie, then I make no apologies.

I’ve been involved in so many projects and have been invited to speak at some important gatherings. It’s been hard work but enormous fund. Getting the Alzheimer’s Society award for being a Dementia Friends Champion has to be one of the highlights, along with chatting to Princess Alexandra. If I am honest, however, my heart is always back In Salford. The work I’ve done with Hazel Blears my local MP and the involvement I have with Salford University as an associate and lecturer has been, and is my lifeline. No two days are the same when you’re living with dementia, but feeling valued and accepted as part of a team helps to motivate me to face a not so good day.

Speaking out

When you’re given that diagnosis of dementia your world falls apart. It was exceptionally hard for me because I had cared for people with dementia since the age of sixteen, so I knew how my future might pan out. I wouldn’t have got through without my Christian faith and the support of those around me.

Yes, we’ve got a long way to go. Sadly there are people out there who are not as fortunate as me. They may not have family or friends to support them. Yes, there are people out there accessing age inappropriate services, they can’t always make their voices heard. Yes there are carers out there who are at the end of their tether, but are too exhausted to raise their voices. When I was diagnosed there weren’t any groups for younger people living with dementia, someone had to speak out. I could go on!

Yes, I may be seen as a gobby campaigner, but do you know I don’t care. I don’t know how long I’ve got until I lose mental capacity, but until such time I will be fighting for the rights and wellbeing of people living with dementia and ensuring that they have a voice.]

Chloe

In closing I would like to introduce you to my very best friend, Chloe, she’s my eight year old King Charles spaniel. Unlike me she is very quiet and she is the perfect companion for me. Chloe understands my needs. She doesn’t try to finish my sentences. She waits for me to find the word I’m struggling to find and she’s not bothered when I can’t find it. Best of all she listens. Quite often that’s all we need, someone to listen, REALLY listen.