'My husband has Alzheimer's at 55 — I dread the day he forgets me'

The Valentine’s cards sent by Simon Ruscoe over the years to the wife he loves all bear his beautiful, distinctive handwriting. They’re carefully stored, alongside his Christmas and birthday cards, but these days wife Emma finds his familiar neat script too painful to read.

She says: ‘Simon can’t write anymore, and that really upsets both of us. He had such beautiful handwriting, and I’ve kept all his old cards but I try not to look at them. He always used to sign offwith the words, “Love you forever and always.”’

Simon was diagnosed with early onset Alzheimer’s in January 2020 at the age of just 55. Recently, amid memory loss and other symptoms of mental and physical deterioration, he also lost the ability to write. Emma, 55, says: ‘My son Alex bought a card for Valentine’s Day this year, and it took Simon 40 minutes just to write, “To Emma love Simon.”

‘Now, when it comes to Christmas or birthdays, I just find a card that Simon sent me years ago, and give it to him to hand back to me on the day.

‘Simon is like a jigsaw where the pieces are dropping off. He’s still here, he’s still lucid, but after working with IT for years, he now can’t even use a mobile phone. He can’t make decisions, even simple ones like what to eat in a restaurant. I have to make all the big decisions, like whether to remortgage the house, on my own. Simon is three years older than me and I always wondered if one day, I’d be caring for him – but I thought that might be in our eighties – I never expected it to happen in our fifties. Alzheimer’s is not the end of your life, but it’s the end of your life as you know it.’

Simon, a computer manager for an IT company and Emma, who works in adult social care, met through mutual friends in 1992, and married two years later. After the arrival of sons Alex, now 26, and Oliver, 21, Simon threw himself into fatherhood with customary gusto.

Emma recalls: ‘He was such a hands-on dad. He loved being a father. When we bought a 1930s wreck in Solihull in 1999, Simon did much of the renovation himself – proudly fixing skirting boards and putting up shelves.

‘It was a sanctuary for our family but in the evenings, we would sit and often plan our retirement together – moving to a dream home in Derbyshire or Devon where we could enjoy growing old together.’

Simon’s DIY skills were the first sign that something was wrong. Emma says: ‘In 2016, I asked Simon to hang a picture on the wall. He picked up his drill, but he stood looking at it, as if it was a foreign object. He didn’t know how to use it or even how to switch it on. I noticed other little signs, like he started to carry on driving straight if I said to turn left, and he drove the wrong way down a dual carriageway late at night, but I put this down to stress at work.’

In August 2016, the family went on holiday in Kefalonia. One day, Simon and Emma left their sons at the villa, and went for a drive. She recalls: ‘We were chatting away in the car about what the boys were going to have for lunch, and we finished the conversation, and then just ten seconds later Simon asked me, “What are the boys going to have for lunch?”

‘We ended up having a massive row, and he said I was going mad, because he denied we’d ever had the original conversation, but to me this was a red flag.’

Simon didn’t get to see a psychologist until November 2018 – and the expert declared his symptoms were down to stress. Emma says: ‘I felt I was going mad and I even went on HRT. Nobody believed me when I said there was something wrong with Simon – and I even started to doubt myself.’

But as Simon’s memory loss continued, the family paid for private brain scans, had an appointment at a memory clinic and finally received a diagnosis in January 2020.

Emma says: ‘It sounds strange, but it was actually a relief to finally have it confirmed. Simon was very upset, but before we left the appointment, we were given details of Alzheimer’s Society.

‘Our charity support worker Charlotte Mitchell became our lifeline, because shortly after the country went into lockdown.

‘Simon’s only trip out during the day was to the supermarket, but you were only supposed to go in alone, so eventually I had to bring his diagnosis letter with me so we could be allowed in together. Once a security guard at a supermarket pointed at him and said, “Can’t you just leave him in the car?” It was so upsetting.’

Emma saw her husband lose his sense of humour, and struggle to remember names, although he still can recognise familiar faces. She says: ‘He gets very overwhelmed and tearful. Every evening, I make him lay the table for supper and it can take him five or six attempts to get a fork out, but I make him do it.

‘I’m determined not to give in, and I know we’re never going to beat it, but we’re seven years in from our first symptoms and Simon is doing so well.

‘I’ve talked to the specialist Admiral nurse and Alzheimer’s nurse about what happens when Simon doesn’t know who I am. Every morning we get up and I say to Simon, “Do you know who I am?” and he says, “You’re my wife, silly.” I am dreading the day when he doesn’t, but I can’t spend my life thinking about the bad things.

‘We’ve just started having issues with the toilet, which was a shock, and I have to remind him to go, but I’m a mum and I can deal with these things.

‘It’s just like having a toddler.’

Now, this devoted couple are living out a bucket list of dreams that they’d had for their retirement – creating memories while Simon can still appreciate it.

Last month, they went to The Ritz and stayed the night, and recent trips include the Orient Express to Harrogate and Center Parcs with their sons, both of whom now live at home to help care for their father.

Emma says: ‘We don’t want to hide away, because Alzheimer’s is nothing to be ashamed of. Simon now wears a lanyard when we go out, which says he has an invisible disability.’

Emma credits the support they received from Alzheimer’s Society for offering practical advice, and keeping her going when times are tough. She says: ‘They helped us with all the financial stuff, helped me get power of attorney in place, get our wills updated, and practical tips like using our Alexa to remind us to take Simon’s tablets.

‘They have saved my life when I’ve felt like picking the car keys up, walking out and never coming back.

‘Just yesterday, I shouted at Simon and said, “It’s not you I’m shouting at, it’s the disease.” I feel bad if we row, but they said to me, “Did you ever argue before? Well – you’re still arguing, because you are still a couple.”’

And a devoted couple at that.

Dementia Action Week runs until Sunday and Alzheimer’s Society is helping people take their first step towards a dementia diagnosis.

Here, knowledge services manager at Alzheimer’s Society, Jaina Engineer, highlights key signs of dementia…

Signs of dementia to watch out for:

  • Finding it hard to complete familiar tasks: Getting dressed or flicking through TV channels may start to become tricky.
  • Not finding the right words:Forgetting the names of common objects or quickly losing the thread.
  • Asking questions they would know the answer to: Asking what year it is may seem trivial but could be a sign.
  • Putting things in unusual places: For example putting your house keys in the fridge.
  • Struggling to understand what you’re seeing: People may mistake patterns and reflections for other things, like holes in the floor.
  • Seeing things that aren’t there: Dementia sometimes causes hallucinations or even hearing or smelling things that aren’t there.
  • Mood and behaviour: If someone is starting to become irritable, losing interest in things, or has extreme highs and lows this may be a sign.

If you are worried about yourself, or someone close to you, visit alzheimers.org.uk/memoryloss for support, information and to check your symptoms using Alzheimer’s Society’s symptom checklist.

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