When her partner Andy was diagnosed with dementia at the age of 52, Christine struggled to know where to turn. She is supporting our ‘We live dementia’ campaign to raise awareness of how our specialist dementia nurses can help.
As a nurse, I know what dementia ultimately means – so when my partner 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.
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.
I want Andy to maintain his independence, but dementia has impacted our everyday lives. He gets lost if he goes out on his own, so we’ve had to put a tracker on his phone. Andy struggles more with cooking, and I’m worried the house will burn down if I’m out. He sleepwalks so I am up a lot in the night to keep him safe. I’m constantly worried about him.
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.
I had to help Andy process his emotions following the diagnosis. He never expected to be told he had dementia. We both felt very lost and didn’t know where to turn for support.
We found out about Dementia UK and its specialist Admiral Nurses through Facebook and were able to book an appointment in our area. Speaking to Helen, the Admiral Nurse, made a huge difference to us. She gave us really clear information about how dementia was affecting Andy’s brain, which helped us both process the diagnosis. She also signposted us to some local services.
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.
Since finding out about Dementia UK, we now know there is somewhere we can go for support and that’s a huge relief. Andy has called the Helpline many times since our first appointment and I know it is there for me when I need it in the future.
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.
I’m taking part in the ‘We live with dementia’ campaign so that other people feel less alone. There are thousands of people in the UK living with dementia and all those people have someone caring for them. Someone whose life has changed. They have gone from being a husband, wife, child, grandchild – to being a carer.
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.
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.
What is young onset dementia? What differences are there to late onset dementia? How does young onset dementia develop?
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.
