For years after her symptoms became obvious, my wife Catriona refused to believe there was anything wrong with her. “Nothing to see here,” she said when she stopped the car in the middle of an empty Waitrose car park, suddenly forgetting how to move into a space. “There’s no problem,” she snapped, after she broke the kettle by filling it with milk, in an attempt to make hot chocolate.
But then, how could anyone think Catriona had dementia? She was only in her mid-fifties.
Part of the issue was that Catriona had always had a slightly defensive personality – so to begin with, it was hard to see what was abnormal, and what was just “her”. Her feistiness was one of the things I fell in love with, when we met as colleagues at an IT company in Berkshire. Catriona always stood up for her colleagues: was strong and supportive, with a defiantly Glaswegian sense of humour.
We married in 1991, a son and a daughter soon followed, and we had a good life with lots of travel and a shared love of food. Catriona adored reading, and often read aloud to me in her soft, nurturing voice. She wasn’t religious, but had a fascination with the spiritual world: crystals, and reiki. My kids were always cynical about this, but whenever they fell over, they’d run to her, and she used her healing powers to make them better. In 2008, Catriona gave up work to look after her mother full-time.
My son now says he recognised Catriona becoming forgetful in her 40s, but I didn’t notice anything until quite a few years later. She’d ask me a question – “what shall we have for dinner”; “what are we doing tomorrow?” – and then repeat it, two minutes later. Sometimes she’d ask a third time.
My initial reaction was to get cross: if you don’t want to listen to the answer, why do you keep asking me again? In response, Catriona would close down and become remote. Looking back, I feel guilty about this. I suppose, deep down, I knew this behaviour was strange, but I was travelling a lot with work, so I didn’t give it as much attention as I should have done. More importantly, I’d never heard of young-onset dementia, and it didn’t occur to me that this could be what was wrong with Catriona.
Things got worse during the 2010s. Catriona would ask me the way to the doctor’s down the road – even though she had been visiting the same surgery for 25 years. In advance of a trip to London from the airport, I had to plan out the route for her, taking photos of all the tube stations, the platforms and the exit signs as she was afraid of getting lost. But if I expressed concern about any of this, Catriona would continue to vehemently deny there was a problem. She’d never been able to cope with the idea of “failure”, and saw my questions as an attack: she always wanted to be strong. But after the Waitrose car-park incident, I knew we had to seek help.
I had now started looking online and thought maybe Catriona, now 57, was depressed, or there was some other explanation. In October 2013, six months after I’d first begged her to go, Catriona finally begrudgingly agreed to see a GP.
The kind doctor asked her some standard memory questions – what day of the week it was, to count backwards from 10 – but Catriona only got 8/10 of these simple questions right. The doctor was clearly concerned, though I found out early on that medics don’t like to use the “d” (dementia) word – and referred us to a neurologist: Catriona was characteristically grumpy. It took so much effort to get her to this appointment, and it turned out to be a total waste of time.
Because, surprisingly, the neurologist agreed with Catriona. He looked at the results of the CAT scan and didn’t see any deterioration of her brain. Even though Catriona only got seven of the memory questions right this time, the consultant sent her on her way. “There’s nothing wrong with you,” he said. “Listen to Radio 4, read the newspaper, do some puzzles.” I knew he was wrong, and was furious.
Things continued to deteriorate. Catriona couldn’t remember where she’d put things; I called her from a business trip to Sweden and she told me she’d been too scared to leave the house.
By now, I had serious concerns that Catriona had dementia and my online research suggested I might be right. Despite her cries of “I’m not doing that again!” we returned to the GP who referred us to a lovely, understanding psychiatrist at the memory clinic. They in turn passed us on to the expert team in Queen’s Square, London. The difference in care was like chalk and cheese.
Even before the scans and tests, it was clear to everyone that Catriona’s memory was severely failing. Although David Cameron was Prime Minister at the time, Catriona thought it was still Margaret Thatcher. We were finally, gently, told that she had Alzheimer’s. Catriona was prescribed a drug, donepezil, which we were told could stave off some of her symptoms for a while, but not her overall rate of decline. We then sat down with a specialist nurse who gave us advice about what to expect as time progressed, other sources of support, like the Alzheimer’s Society, and the benefits available.
Strangely, I found the diagnosis a relief. It was only later that I burst into tears, when on the phone to my boss, telling him that I needed to go part-time. Catriona didn’t like this diagnosis, not at all. She frowned severely, crossed her arms and muttered: “I don’t want this in my life.” Then she didn’t say a word for 48 hours.
After this, I did what men often do: I tried to fix things. The Alzheimer’s Society signposted me to courses and support groups. In the end, I only went to two out of the six classes because Catriona was so strongly against it.
Her decline was gradual, but continual. Despite having therapy, she forgot the words for duck, gorilla, frying pan. Catriona did eventually stop struggling against her diagnosis. I’m not sure she accepted it, exactly, but at some point, she ceased being able to understand or remember the word “dementia”. We volunteered for MRI research trials and projects about the use of music in treating Alzheimer’s: I’m a musician, and I wrote songs about my sadness.
“I want to go home,” Catriona started to say to me. So I took her to the house where she grew up in Scotland, but she didn’t recognise it: she still wanted to “go home”. It was heartbreaking. I knew that what Catriona really wanted was to feel “safe”: I would take her home if I knew where her home was: but all I could do now was cuddle her, and hold her hand.
In 2015 – in what turned out to be the best thing that could happen to me – I was made redundant. Catriona needed me more and more: she couldn’t function on her own. We decided to move to Devon, to be near my brother. The move was good, but Catriona continued to deteriorate. “That man hates me,” she would say about a gentleman in the street, who she’d never seen before. She’d argue that the colour blue was, in fact, red. It was so hard, but I guess I coped by never arguing and accepting that my life was just different to everyone else’s. My family were a big help, as was my music.
In a strange way, lockdown was comforting – a bit “welcome to my world”. But by 2020, looking after Catriona at home had become impossible. I had to bathe her and help her with the toilet – things I was more than happy to do – but she eventually forgot how to get out of the bath, and was quite heavy to lift. She lost her balance on the stairs, so I would always be with her, guarding her on the way up and down, and sometimes I’d have to pick her up off the floor. It just wasn’t safe any longer.
Eventually, I made the decision that she had to go into a care home, a place called Heanton. As it was the pandemic when a place came up, I dropped her off, then was unable to see her for three months. My daughter and I were in tears as we said goodbye: Catriona didn’t understand what was happening. It turned out she was a lot more advanced in her illness than many of the other residents.
Looking back, I wonder now if I had simply kept Catriona at home for too long. And this is one of the reasons I have given this interview: to raise awareness of young-onset dementia. All the photographs you see of people with Alzheimer’s are elderly: but this is not an illness that only affects old people. Early diagnosis is so important, especially as the new drugs will only work with early intervention.
Catriona, now 68, has been at Heanton for more than three years. I visit her regularly, and play music to the residents with friends once a month. That is rewarding, seeing people who otherwise move and react very little start to tap their hands on the chair. In many ways, life is back to “normal”, travelling, visiting friends, going out for meals. The constraint of the previous eight years, of always being on guard, has eased somewhat.
My wife no longer understands the words “birthday”, “Christmas” or “husband”. A lot of the time I’m not entirely sure she recognises me. Catriona is still declining, but in some ways, her decline has eased off – possibly because she is getting more focused attention. The last time I visited, I got a smile; she even used my name for the first time in three months. Despite the awfulness of this illness, Catriona often seems genuinely happy. As for me, I still have my memories.
As told to Miranda Levy
For more information, visit Alzheimers.org.uk