I’m still me, I’m still Andy
Read Andy’s one year on update
Andy: 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.
Christine: As a nurse, I know what dementia ultimately means – so when Andy was diagnosed with young onset dementia, I was devastated. I know that the person I love is going to change. He’s still Andy, but he is going to become a different version.
Living with dementia is hard. Your whole life changes. Relationship dynamics change. I’m Andy’s carer now – but I’m also still his partner.
I want to spend the time I have with my family
Andy: 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.
Christine: As I’m only 44 and Andy is 52, we have to keep getting up every day and going to work. I work 12-hour shifts in a hospice and Andy is still working as a sports technician in the local school. When I finish my shift, my work doesn’t stop there. At home, I manage the cooking, the cleaning, our finances – everything. I feel there is a lot more pressure on me now.
Andy
My partner, Christine, is living with dementia too
Andy: 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.
Christine: We didn’t get any support when Andy was diagnosed, not even a leaflet. I didn’t know where to turn and I had to educate myself about dementia. I felt very alone. It was difficult for me as a nurse, so I can’t imagine what it’s like for other people who don’t have any healthcare experience.
The Admiral Nurse gave us some hope
Andy: 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.
Christine: Helen made us feel better about everything. She gave us the confidence to keep doing the things we enjoy. Andy and I have taken part in many challenge events for Dementia UK since. We go swimming in our local lake and have signed up for marathons. We have learnt we can live well with dementia if we make adjustments. It’s part of our life now.
Andy and Christine
I want to raise awareness of dementia
Andy: 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.
Christine: My advice to anyone who is worried about dementia is to go to the GP as soon as you can; don’t put it off. You might be worrying over nothing. But if you do get a diagnosis, you can start to find support.
Lots of people aren’t aware of the support from Dementia UK and Admiral Nurses. We want to raise awareness so families can get the help they need at a really difficult time.
