Last days laughing
Like my tattoo says, I won’t let this cruel disease beat me
As I reached the top of the stairs, I stood there, puzzled.
‘What did I come up here for again?’ I mumbled. We’ve all done it, haven’t we? Most people would curse themselves for being forgetful or put it down to a senior moment.
But as I stood here now, a shiver of fear ran down me.
Going back downstairs to where my partner of 11 years, Martin, was watching West Ham on the TV, I sat down.
‘I’ve decided. I want to take the test,’ I said softly. He switched the telly off. ‘Are you sure?’ he asked, knowing exactly what I meant.
‘Yes,’ I nodded. ‘It’s like a guillotine hanging over me. If we know, at least we can deal with it, be prepared.’
I was talking about the test for Alzheimer’s.
You see, I’d lost three members of my family to a rare form of the awful disease.
My mum Susan had been 58 when she’d died, her dad Peter had been 42, and his dad had succumbed to it aged just 32.
It had been awful to watch my bright, bubbly mum disappear.
Most cases of Alzheimer’s are not genetically inherited.
But the type affecting my family was.
And because three generations of the same family had died from it, I’d always known we were at a much higher risk, too.
I’d tried not to let it consume me. I’d focused instead on my kids from my first marriage – Leanne, then 18, and Craig, 16.
Now I had a man I adored and a job I loved as a support worker for adults with learning disabilities.
Martin and I enjoyed taking trips to Great Yarmouth and having a drink at our local pub.
At weekends, we’d go to watch our beloved West Ham play.
But, lately, I’d noticed that I was forgetting things more... It’s why I wanted to know. Before the test, I was given six months of counselling to prepare me.
Then I went for the simple blood test to see if I carried a presenilin 1 (PS1) gene that made me more likely to develop Alzheimer’s.
I was so frightened as I was called into the doctor’s office.
‘I’m afraid the results weren’t good,’ he said. ‘You have the gene.’
Beside me, Martin sobbed into his hands.
I was just 37 and the life I’d mapped out in front of me was going to be snatched away.
But, strangely, I felt a burden lift from my shoulders.
‘At least we know,’ I said, trying to comfort Martin. ‘We can deal with it now.’
Nobody could tell me when I’d get it, although I was pretty sure I was showing early signs.
And because of the ages my relatives had died, I knew I’d probably suffer the same fate.
Martin and I had thought we had another 50 years together...
I’d just have to cram half a decade of love, life and laughter into 20 years – if I was lucky.
But I vowed that while Alzheimer’s would get its claws into me one day, it wouldn’t beat me yet.
So, despite the blow, it was business as usual. I carried on working, having a stroll round Dagenham Market, bartering with the stallholders.
And Martin, once he’d got his head around it, was my rock.
‘I’m going nowhere,’ he promised me.
And the following year, he proved it really was in sickness and in health when we married and honeymooned in Menorca.
But slowly, Alzheimer’s crept up on me.
I’d always loved reading
I’d noticed I was forgetting things more and more
Martina Cole books, but now I’d read the same line over and over again, as I kept forgetting what I’d read.
Then, one day, I went to the supermarket to do our weekly shop.
But standing in the aisles, it seemed like everything was closing in on me.
‘I can’t remember why I’m here,’ I sobbed.
With that, I abandoned the trolley and fled home.
After five years, I had to quit work because I kept making mistakes.
And I knew it was time to give up driving – I was a danger to myself and other people.
It felt like my independence was being ripped away from me.
My balance and speech started to be affected too.
The frustration gave me terrible mood swings, and Martin bore the brunt of them.
He was so kind and understanding, though.
And I still vowed to keep on fighting.
It’s why, last year, I decided to show Alzheimer’s exactly what I thought of it.
I went to a tattoo parlour and had Alzheimer’s can kiss my arse tattooed on my right arm. ‘There,’ I grinned. ‘Take that!’ Now, though, 11 years after I was diagnosed, every day is a battle.
My speech is the biggest thing I have trouble with.
My brain knows what I want to say but I struggle to get the words out.
Martin still works as a bus driver, but I can’t be left alone.
Leanne, now 29, comes round when he’s out. My kids have been great. I try not to worry whether I’ve passed the Alzheimer’s gene on to them. I pray they’ve been lucky. If the kids get tested, it’ll be their choice. We haven’t discussed it yet.
I have five amazing grandchildren now, and Martin and I still enjoy time together. We go and watch the footy and have meals out. We live for the day and can’t think about tomorrow. It’s hard to believe, but I’m not scared. Alzheimer’s will rob me of a future but it won’t take everything.
I still have a family, love, happiness, a sense of humour.
However long I have left, I’ll spend my last days laughing.
If you don’t believe me, just check out my tattoo!
Hubby Martin – my rock Me in 2014, after a training course for my career With my daughter Leanne
My ink says it all! I’m living for NOW!