The Sunday Times

Glenys Kinnock was diagnosed with Alzheimer’s five years ago. Now her children are urging more people to join the drive for better treatment

When people talk about Alzheimer’s, they often describe it as a “cruel” or “horrible” disease. It’s hard to imagine any disease that isn’t either of those things but, unlike other incurable conditions, you lose a little bit of the person you love every single day with Alzheimer’s.

Mum was diagnosed in 2017 when she was 73, although looking back we knew something was wrong for at least a year before that. Mum has always been “star baker” when it comes to birthday cakes, and she took particular pride in those she made for her beloved grandchildren — everything from princesses to football pitches and hedgehogs. We were struck when one year she arrived with a simple Victoria sponge. Dad later admitted that she’d become confused trying to follow the recipe, so he’d made a cake from a shop-bought mix. Mortified, she didn’t want anyone to know.

We sometimes talk about what might have caused it — perhaps the mini strokes she suffered 15 years ago, or did she fly too much as part of the development work she was so passionate about? If she’d exercised or eaten more avocados, would things be any different? We believe it’s not just one thing, it can’t be. It must simply be an accumulation of her life experiences — and bad luck.

As a family, we’ve been fortunate never to have suffered a terrible loss or to have known real, life-changing grief. But Alzheimer’s is different, it’s a slow grief that has been building for more than five years since Mum was diagnosed.

We can’t imagine what that day was like for her. She never complained, but we know she was terrified. For such a formidable, strong, intelligent, funny and dignified woman to feel her mind slipping away must have been devastating.

At the time of her diagnosis, doctors told us that we could expect her to live for ten years or so and so we’ve always known that her condition would only get worse. But hearing there were no treatments available that could slow or stop her disease was agony. We asked about medicines that could relieve symptoms and we looked into trials where experimental treatments were being investigated. But these largely target the early stages of the disease, and we realised it might be too late for Mum to benefit.

One of the first pieces of advice we were given by a friend who had lost both his parents to the disease was to never “challenge” the sufferer because it can cause trauma and anxiety. And yet every medical appointment started with a quiz, where Mum would be asked: “What’s your postcode?” or “Who is the prime minister?” It was horrible seeing her panic, knowing that she didn’t have the answers. Dad was prepared to do anything, but we quickly realised that we just needed to get on with living with her diagnosis as best we could.

We often talk about what she would want, how she would feel about her life as it is right now — of course, she would hate it. The lack of dignity and independence would have been unbearable. But it’s her dependence on our dad that would have been her greatest source of agony.

Dad is 80 and in relatively good health. He’s still as sharp as he ever was. Whatever loss we feel is nothing compared with what he suffers every day.

We have wonderful carers. But Dad remains totally committed to her care and is still managing the mornings and nights, which is becoming increasingly hard. We know he sees it as his “duty” but it’s also because he loves her deeply. After 55 years of marriage, even the very little that they do have is better than not having her there at all.

He doesn’t ask for help. All we can do is ensure we see each other as often as possible — we chat, laugh and have good times. Mum is the one with the disease, but Dad is the one who suffers — although he would hate us saying that. It’s a relief that she is unaware of the reality we are facing, whereas Dad lives with it every moment of every day.

Her personality is still there. She’s cheeky, mischievous and very, very funny. If in doubt, she’ll start a conga around the kitchen or break into song, most often a Welsh hymn. We’re most thankful that the side of her we haven’t lost is her loving nature. Her grandson, Joe, recently regaled us with a story he’d heard from a friend, who had been having a bad day and was feeling down. He told Joe that he’d met an “old lady” in the park who told him he was “wonderful” and should be “very proud of who he is”. Of course, it was Mum he had met, on one of her daily walks with her devoted carer Joyce. When Joe told us, he said: “You see? She’s still making people happy, even now.” He’s right, she is.

Our family are witness to the day-to-day cruelty of this disease, but the most painful thing is how much we miss her. She’s in the same room but we can’t talk or get through to her. She’s gone, but she’s standing right there.

Not only does Alzheimer’s cause harm to millions of families, but it’s unsustainable for our health and social care system. Alzheimer’s Research UK says the cost of dementia is expected to nearly double by 2050, from £25 billion to more than £47 billion — but research can change this, and more scientists are working to tackle the disease than ever before.

For Mum, it may be too late. But there is hope. We can all register our interest to take part in clinical research, whether you have a dementia diagnosis or not, to help bring about life-changing treatments for future generations, and ensure families don’t have the same heartbreak as ours.

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