My dad has Alzheimer’s. He can’t remember who I am
‘People always ask if he’s getting better, but they don’t understand he never will’
When Robyn Dudley gets married this summer, her father won’t be walking her down the aisle.
“People will ask: ‘Oh, is your dad going to be there?’”, she says: “When I tell them he’s not, they’ll always be apologetic – but I always feel like they’re judging me for not wanting to have him there.”
It’s been about seven years since Robyn’s dad David was diagnosed with early-onset Alzheimer’s, a condition estimated to only affect around 42,000 people in the UK. Whereas the illness is most often seen in over-65s, around five per cent of sufferers are younger.
Now, before her wedding, I’m talking to Robyn about why her dad’s condition means he won’t be there: “What other people don’t understand is that the person who would be there wouldn’t understand what was going on, and wouldn’t even know who I was.
“Trying to make other people understand that is really difficult. It’s not that I don’t want him there, it’s that I know for him it would be too distressing and difficult an experience.”
Regardless, David’s disabilities mean he wouldn’t be able to come to the wedding anyway – his health has deteriorated rapidly since his diagnosis. David was 54 when he was diagnosed with dementia, but the signs had been there for a number of years: “I was probably about 15 when my dad started getting symptoms.
“Things like being supposed to pick me up from school and just not turning up, or being inappropriate or slightly unusual around my friends. Of course, when I was 15 it was very embarrassing and frustrating.
“As things got worse, we became aware within my family that there was obviously something definitely wrong, because of all the things he used to be able to do which he started to not be able.
“One of the main problems at the start was losing all ability to plan things or work out how to do things. So we’d go out for a meal, and he’d have his knife and fork there but wouldn’t be able to use them because he just couldn’t remember how.
“When you’re a 19-year-old out for dinner with your family and your dad’strying to eat pasta with his hands, it becomes really embarrassing because other people don’t understand what’s going on. If you’re with an older person they might think ‘Oh, he’s got dementia’, but certainly when it’s a younger person you don’t get that kind of social excuse.”
By the time her dad was diagnosed, Robyn was heading off to uni: “Certainly between being 19 and 21 it was a really challenging time. My dad was still a part of our family and still living at home and we were still trying to treat him as our dad, but at the same time it was almost like I felt constantly let down. I felt like he wasn’t able to provide all the things I needed from him.
“I was going to uni and going through a lot of changes, and I felt like I needed my dad and wanted to be able to tell him stuff. At that time it was a real struggle because he was still able to interact with me, but at the same time the things that you’d tell him just wouldn’t go in.
“It was a very frustrating process too, because we felt all of the services available didn’t match any of the things my dad needed or that we as a family needed. There were various day centre-type things, but at the time my dad was in his 50s and just didn’t fit in.
“That left us in a really difficult situation, and there was no-one who could provide us any support or information about what we could actually do to get my dad the support and the care and the activities that he needed.”
David’s health has rapidly deteriorated in the last year, and he now lives in a care home. As far as Robyn is concerned, there isn’t much of her dad left: “When he first got dementia he was still my dad, but now he’s just not. It’s like my dad’s died, and there’s a zombie in his place.
“It’s difficult because you feel guilty for feeling like that, but everything that my dad was is no longer there. If my dad was dead, it would be different – but it’s the fact that there’s still a physical presence there. It’s a constant struggle to try and come to terms with.”
So how do other people react when Robyn tells them about her dad’s illness? “People know about dementia, and people know he’s got it, but because he’s younger and because it’s my dad and not my granddad, it’s almost like they can’t put two and two together. Even my doctor friends are surprised when I tell them, because you just don’t see it very often.
“When I used to go and look after him, or if something would happen and he’d deteriorate, the next time I saw people they’d ask: ‘Is your dad better now?’ Every time something happens, he gets worse – and that’s difficult for other people to realise, because normally with an illness you eventually get better. When people ask me about how my dad’s doing, it’s always going to be worse.”
Early-onset Alzheimer’s is rare, and its rarity is what caused Robyn to feel so alone when her dad was diagnosed. She advises anyone going through the same thing to seek out people in a similar situation: “It’s important to know that there’s a lot of other people going through the same thing.
“It’s extremely isolating, and it’s really difficult to talk to your friends about because it’s so hard to understand. There’s a lot of people out there going through similar things who you’ll be able to talk to.”
Robyn is now 26, and a doctor. Though her dad’s condition didn’t inspire her to pursue her career, it’s certainly had an effect: “My experiences have definitely given me a much greater understanding of the things that families go through – if I have a patient with dementia, I can have an understanding of the sort of things they’re going through.
“Mainly I understand how frustrating it can be. Every time he loses an ability to do something, it’s back to square one – he basically can’t talk any more, he can’t feed himself. It’s a process of constant bereavement. Every time he loses something else, it’s like you go through the process of grieving once again.
“People think it must be easier for me because I’m a doctor. But it’s my dad – it never gets easier.”
You can visit the Alzheimer’s Society site here for more information on dementia.