My family and I will all be sitting down to watch the EastEnders Christmas special together this year – it’s an important part of anyone’s festive season, even more so if you’re in it!
But it can cause confusion for my stepfather Derek. Because now when he watches EastEnders, he sometimes gets muddled between fact and fiction.When I’m not there, he’ll watch me on TV and say to my mum, ‘Is Tanya still in the bathroom?’
It seems he thinks I’m in the house, because he’s seen my character Rainie on screen.
Derek was diagnosed with Alzheimer’s in 2013, aged 81. He has always been a highly intelligent man who worked as a design engineer and ran his own business.
But after he had a mini stroke, we noticed changes in his memory. At first, we'd think, ‘Well, he’s getting older and more forgetful,’ but it became more obvious that something wasn’t right.
When the doctors told us he had dementia, Derek, who is a very practical person and doesn’t easily show emotion, became accepting of it pretty quickly.My mum was more upset – to think of seeing someone you love possibly slip away, knowing what he might go through.
We got in touch with the Alzheimer’s Society and learnt more about the condition, and we sat and talked about it a lot as a family.
We made a decision to take each day as it comes, that there was no point living unhappily, worrying what the future was going to hold – let’s live in the now, the today.
And that has served us really well. We speak openly and practically and philosophically about it, and we face it head-on.
Everyone’s experience is different, and dementia can develop quickly – with Derek it’s been pretty gradual over the six years.
The most difficult part for him is having to slow down and recognise that he can’t do the same things he used to.
He gave up driving because odd things began to happen, like he once swerved to avoid something in the road that wasn’t there, so that loss of independence is tough.
And he’s always been very much a do-er, he can’t sit still for very long unless he’s watching sport on the telly.
He loves gardening and he’s still pottering around the garden, but when he bought some new plants recently that needed to be potted, he just couldn’t remember how to do it.
Sometimes he can’t remember if he’s brushed his teeth, so he’ll do them twice, and he won’t remember that he’s got to go up the stairs to get to the bathroom.
He loves playing the piano, but now he can’t remember that he’s just played something, so he’ll play the same song half a dozen times.
One time, he couldn’t even find the piano, and was looking for it on the shelf under the kettle in the kitchen. And of course the piano isn’t even in the kitchen.
With the TV remote control, he’ll sometimes look at it and not know how to use it – he’ll start pointing it at the cupboard.
We do laugh, because you have to find the funny side – there is humour in life, even in tough times. One night he was going upstairs and I said, ‘Sleep well, Derek,’ and he replied, ‘Well, I will do if I can remember where the bed is…’ He does understand the situation, and the raw reality.
Another difficult thing is the physical danger. His brain seems to stop telling
his body to feel pain, so he could have a deep cut and he won’t know he’s bleeding because he doesn’t always feel it.
He sometimes has problems seeing things below knee height, so he’ll fall over coffee tables, or any kind of obstacle – it can be a person sitting on the ground and he just won’t see them.
We’ve had to move flower pots or he’ll just wade through them. And in the garden, we have put thick white tape on the steps, so he can see them – his brain can make natural colours, like grey, blend into each other.
The edges of plates can be difficult to see for Alzheimer’s sufferers too, and the food will fall off, so we try to use vivid colours to help him out.
Luckily, he’s still good at looking after his personal hygiene – so long as he can find the toilet! Recently, in the middle of the night he got up and sat on the bedroom chair thinking it was the loo.
My mum was like, ‘No, Derek, quick!’ She’s always sleeping with one eye open, looking out for him all the time. He can’t be left alone.
He couldn’t be responsible for doing anything, like cooking, that could cause him harm.
Mum is really good at being diplomatic, but she has to stop him hurting himself. It can sound like she’s telling him off, which frustrates him, and it’s difficult because his brain isn’t always working logically now.
To give mum some time to herself – the first in six years – he’s started going to a local day care centre. I don’t live close by and my EastEnders filming schedule is erratic, but I try to get there when I can, and she has neighbours who help out too.
Dementia can be a very lonely illness for the people living with it and their carers, especially at Christmas, and it’s easy to think you’re the only person who feels like this.
But it’s not something to hide away. The more we speak about it, the more people understand and will rally round.
We haven’t always spent Christmas together as a family – Mum has always been happy for me to go away if I’ve wanted to – but Derek’s illness has made me want us all to be together for special occasions.
Because change is happening, and I want to spend the time with Derek as much as I hope he wants to spend the time with us. While we can still enjoy celebrations together, let’s do it, I want to keep hold of these moments.
Derek is still aware of time and knows that Christmas is coming. He still gets enjoyment from it, so we’re going away to a little hotel we’ve stayed in before, because familiarity is really important for people with dementia.
They need to be able to connect with their surroundings and feel safe with the people they’re with, plus it’s respite for my mum.
Derek will hopefully still be able to play Christmas carols on the piano – even if he does the same one more than once – and long may that continue.
Help the Alzheimer's Society be there for people affected by dementia during one of the hardest times of the year,and all year round, by donating at Alzheimers.org.uk/christmas-gift
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