Two years ago, the word Alzheimer's had never entered my vocabulary.
I had always been renowned for a brilliant memory. But then it started to let me down – badly. I'd forget the simplest of words in meetings. I'd recognise people in front of me but couldn't put names to the faces I'd known for years. The worst episode happened at work. I came out my office one day and had no idea where I was, or who all the voices around me belonged to.
When I received the diagnosis of early onset Alzheimer's in July 2014 I was bizarrely relieved – I finally had an explanation for what had been going on.
Despite how my life has changed over the past 18 months, I try to remain positive. For me a diagnosis has meant adapting to the challenges thrown at me. I have had to accept that changes need to be made to compensate for the bits of my brain that no longer work as they should, and I know that I'll have to continue to adapt as the disease progresses and new problems develop.
I have a monthly calendar that keeps me in order for the future; I have a weekly calendar on my fridge that tells me what I'm doing each day; I have alarms going off all day telling me it's time to do things such as take medication. I write a daily blog called Which me am I today? which acts as my memory for all the things I've done.
Most of my days are fair to middling, but on bad days it's like a fog descends on my brain. During these times of confusion I have to work really hard to remember the day of the week and what I'm supposed to be doing. This feeling I liken to the process of untangling a necklace. If you're feeling calm you can sit patiently and one by one untangle the knots – or slowly work out the reality of the day. But on the bad days it's like when you're feeling impatient and the necklace gets even more tangled and knotted and you can't put it right.
In these moments I have to tell myself that it's not me, it's the dementia. I remind myself that the fog will clear eventually, and until then I'll sit quietly and wait. It's a bit like a game of chess – you patiently wait for your opponent to make their move and then try to out manoeuvre them.
It's often other people who make life difficult - they struggle to see past the diagnosis. That's why I write my blog – to show people that I still have opinions, and can still articulate them.
People forget that those of us with early onset dementia are at the beginning of a journey, not the end. We still have a lot to contribute to society. We haven't suddenly lost the ability to have hobbies, to speak our minds, to try to improve our futures or the lives of others. Writing my blog, speaking at events and being involved in projects around the country not only raises awareness about dementia, it helps to keep my brain alert and functioning better than if I gave up and allowed others to do things for me.
Of course, I still have fears about the future. I'm concerned about losing my independence, which is why I develop strategies around the house to enable me to continue living alone. I also worry about going over the edge into a world I no longer recognise. I try not to dwell on this though. I know I have no control over it.
My worst fear is no longer recognising the two most important people in my life – my daughters. I tell them to make the most of today. I reassure them that, no matter what happens, the deep love I have for them will remain.
No one knows what's round the corner, so I focus on the here and now. Worrying about something I have no control over is a waste of emotion, so I do my best to be content in today's existence. Tomorrow will come soon enough.
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Guest post: "I have early onset Alzheimer's, but I still have a lot to contribute"
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MumsnetGuestPosts · 15/02/2016 16:39
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