It was my husband who had dementia. Howard Hopkins—he was an incredible man. He was active, both physically and mentally, and always so clever. He walked up Machu Picchu, trekked in Nepal, and was constantly raising money for charities. We even ran three allotments together. We ate well, didn’t drink much—he did everything right. Yet, dementia still found him.
He was 83 when he died, but he had dementia for about seven years before that. It started with little things—his spatial awareness in the car wasn’t right. I noticed it two years before the diagnosis. I stopped getting in the car with him because I knew something was off. But at the time, you don’t log those things as symptoms. It’s only when you look back after the diagnosis that you realize—oh yes, that was part of it. And then, the guilt sets in. Should I have noticed sooner? Could I have done something differently? But the truth is, nothing could have stopped it. And that’s something I’ve had to come to terms with over the years.
He ran his first marathon in London after recovering from a lung infection. He had decided he was never going to be unfit again. That was the kind of man he was—determined, driven. We built a life together, a business, a rhythm. That rhythm was what got us through lockdown. Every morning, before anyone else was awake, we went for an hour’s walk. It was the only way he could cope with being told to “stay at home.”
I knew my husband exceptionally well, which helped me care for him. But knowing him so well also made it harder to watch him slip away. The man who could once calculate finances in his head was suddenly struggling with simple tasks. The Alzheimer’s Society was a lifeline, giving me a person to call when I needed guidance. Having one consistent contact made all the difference. I know not everyone has that, and that’s hard. I often wonder how others cope, those without the support or knowledge that I was fortunate to have.
The diagnosis was a turning point. We went to the clinic, and they had him complete a drawing test. The moment the nurse saw it, she knew. The doctor took him for a walk to check his gait, and then they told me, “Don’t worry, we’ll stop him driving.” It wasn’t left to me to tell him—thank God. Howard had been raised to always listen to the doctor, so that was final for him. As soon as we got home, I sold the car. I knew if he saw it on the driveway, he’d keep thinking he could drive. And even after that, for a while, he’d walk outside looking for it, convinced he’d parked it around the corner.
That moment marked the beginning of a long road of small, painful losses. Each day, a little more of him faded away. Some days, it felt like I was grieving before he was even gone. Other days, I held onto the moments of clarity he had, treasuring them like rare jewels.
People don’t realize how much you can work around dementia if you think outside the box. Howard was a money man—always counting notes. One day, I noticed him sitting by the window, sorting cash. I had no idea where it came from. But I had a Monopoly set upstairs, so I swapped the real money for fake notes. He never noticed. That’s the trick—you don’t say no, you just find another way.
I had to be creative in other ways, too. If visitors made him uneasy, I’d send him upstairs to “check if there was a queue forming for one of his guided walks.” He’d go happily, and we avoided distress. When he started believing he was in a B&B instead of his own home, I played along. If he thought I was a cleaner, I was a cleaner. If he wanted to go home, I’d say, “Jackie called—she’s having the house done and wants you to stay here.” That settled him. It was all about easing the moments of distress in a way that made sense to him.
The hardest part was when he stopped recognizing me. That happened about 18 after he was diagnosed. But even then, our friends would say, “The only person he ever talks about is you, his wife.” So, in his heart, I was still there. It hurt, though. More than I could ever put into words. To see the man, I spent my life with, who had shared everything with me, look at me as if I were a stranger—it’s something that breaks you in ways you never expect. I had to remind myself daily that his love for me hadn’t vanished, only his ability to recall it.
Dementia strips away so much. He lost his independence, the keys he had carried all his life for work and home were suddenly gone. I had to hide them, and that confused him. One day, he tried to open the door and found it locked. He asked why, and I told him, “The government locked it.” He never understood computers, so I said, “It’s all controlled by computers now.” He accepted that. And, of course, the news was full of lockdown messages—stay at home, stay at home. It reinforced what I told him.
We had routines. He needed them. Mornings were always the same—up at the same time, washed, shaved, dressed, breakfast together. I’d tell him his medication needed time to work, so he’d sit quietly while I got myself ready. It worked.
Humour helped, too. One night, he refused to take his tablets, insisting he wanted a second opinion. So, I called my son. “Good evening, Doctor,” I said. Without missing a beat, my son replied, “Good evening, Mr. Hopkins. This is Dr. Spock.” That was the only name that came to him in the moment. But Howard believed it. “Ah, well, if you’re giving them to me, that’s all right then.” And he took them.
The hardest thing to witness, though, was the way hospitals handled dementia patients. Howard had two strokes—one in September, and another in March that took him. But in the hospital, they treated him like just another patient, not a dementia patient. When they planned surgery for his final stroke, I said, “Why? He’s in late-stage dementia.” The doctor had no idea. That was appalling. It should never happen. It made me feel powerless, like despite all my years of caring for him, despite all my knowledge, I couldn’t protect him in the end.
After he passed, I kept coming here—to this community, to the people who understand. Because carers need each other. We share experiences, we support one another. And those with dementia, even when they’re quiet, sometimes open up if you sit with them. A little moment of connection—that’s everything.
If I could tell people one thing, it would be this: never say no to a dementia patient. Find an alternative. And never, ever do this alone. Find someone you can talk to. Don’t give up hope.
