Andy, 52, lives with young onset dementia. As part of our ‘We live with dementia’ campaign, he shares how his diagnosis affects him and his partner Christine.
When I was first diagnosed with dementia, I felt angry. I’ve always lived a healthy life and was never expecting to be told I had dementia. It didn’t seem fair. I thought having dementia was my fault.
But that changed when my wife Christine and I booked an appointment with dementia specialist Admiral Nurse Helen. After the appointment, we sat on a bench outside and let out a massive sigh of relief. That afternoon, we went for a swim in our local lake – Helen had given us the confidence to carry on doing things that we enjoy.
It’s not easy being diagnosed with dementia at my age – I’m only 52. It impacts many parts of my everyday life. I’m forgetful and can have the same conversation three or four times. I sometimes say completely random words in the middle of conversations. I also have nightmares and wake up every night terrified.
I used to love my job, but I’d rather spend the time I have left with my family and friends – but I must keep working to pay rent, bills and to have money to go on holidays to make memories while I can.
I worry about my partner, Christine, more than I worry about myself. She is also living with dementia. Christine works in a local hospice and deals with end-of-life care every day, so she knows what’s coming. I used to find her crying in the bathroom, but now we’ve made a pact that if we’re going to cry, we cry together.
I find it really hard to accept that Christine wants to care for me. But it isn’t about me, it’s about her. Christine will still know who I am, and she will still love me the same. We’re more in love now than we’ve ever been. I might forget who Christine is, but I’ll never forget how she makes me feel.
We didn’t receive any support or information at all at the diagnosis, but when I came across Dementia UK on Facebook, Christine booked an appointment with Admiral Nurse, Helen. Helen flicked a switch in my mind. She explained in really simple terms what dementia was and how it was affecting my brain. Instead of fighting what was happening, I accepted it.
Knowing that the Admiral Nurses are there for Christine as my condition progresses is so reassuring for me. It’s given us both a little bit of security to know that support will be there when we need it on our journey.
I speak about my dementia diagnosis very openly. I’m not embarrassed by it or ashamed of it. I’m still me, I’m still Andy. I’m trying not to let dementia take over my life and be the only thing I am.
My advice to anyone with a dementia diagnosis is, “Don’t give up.” Just because you have dementia doesn’t mean that your life has to stop. Reach out for help – you’re not alone. Dementia UK is here to support you. With their help, you can carry on doing all the things you enjoy.
I’m taking part in the ‘We live with dementia’ campaign to raise awareness of young onset dementia and Admiral Nurses. I’d never even heard of Admiral Nurses before my diagnosis. That needs to change. One in three people will get dementia, and it is terminal for 100% of those people. Every single one of them – and their families – deserves specialist support.
I also want to break down the stigma surrounding dementia. If you break your leg and you need crutches, you’re not ashamed about it. We need to talk about dementia in the same way.
If you love someone living with dementia, you’re living with it too. That’s the message behind our new campaign. It doesn’t just affect the person with the diagnosis – everyone around them is also affected. And with one in two of us impacted by dementia in our lifetime – whether by caring for someone with the condition, developing it ourselves, or both – it’s a message that’s as vital as ever.
Information and resources about young onset dementia, where symptoms develop before the age of 65.
Whether you have a question that needs an immediate answer or need emotional support when life feels overwhelming, these are the ways our dementia specialist Admiral Nurses can support you.
