Music is so important to my husband, Frank. As a young man, he was the singer in a band called The Wolves, who supported The Kinks. But now he can’t remember how to play his guitar, and it’s a source of huge frustration. A close friend has been giving him lessons, and although he soon forgets what he learns, he clearly enjoys making the music. While he’s playing, I get to see glimpses of the old Frank. Sadly, his illness has stolen his motivation, so he never wants to practise alone.
Alzheimer’s doesn’t just strip people of their memories, but also their personalities. It impacts everything, and it’s heartbreaking.
Frank and I have been married for nearly 40 years and have three children and four grandchildren. We’ve always had a great relationship, which is based on mutual trust and allowing each other to be individuals. Our marriage was filled with cultural activities, travel, socialising and debate. Often, we didn’t agree about current affairs, but that was part of the fun because we had such stimulating discussions. Now, that side of our relationship has gone forever. Frank isn’t able to follow the news anymore.
In 2015, he was diagnosed with prostate cancer, which had spread to his groin. He was given radiotherapy and hormone therapy, and it was at that point that I began to notice changes in his memory and cognition. For the first time, he forgot our wedding anniversary. He was a very good driver, but suddenly he was making mistakes. When I pointed them out, he couldn’t see the problem – which rang alarm bells. Once, he went to pay for a car park ticket and left the car not only unlocked, but with the door wide open. Again, he didn’t seem overly concerned.
At first, things happened intermittently, so it was fairly easy to dismiss them. But as these occurrences became more frequent, I became worried and pushed for a diagnosis. Initially, we thought his memory problems were linked to his cancer treatment. I believe that hormone therapy can, in rare cases, cause memory loss. But then he finished the therapy, and his memory problems continued to worsen.
For a year, he was treated for depression. He was aware of what was happening to him and was upset about it, but he wasn’t depressed, so the medication did nothing. I pushed for a referral to a memory clinic but he kept passing the standard memory tests, so we were told there was nothing to worry about. At that point, Frank was still so intelligent and articulate, and he could easily tell you who the prime minister was or what the date was.
Eventually, after I continued pushing, Frank was given a CT scan that ruled out vascular dementia. And finally, by a process of elimination – just before the first lockdown, in January 2020 – the diagnosis of Alzheimer’s disease was made. We were both devastated and concerned about the future.
I was frustrated by how different his experience of Alzheimer’s diagnosis was from his experience of prostate cancer. When cancer is diagnosed, there’s an immediate action plan, a treatment plan – a sense of we’re all in this together, and these are the outcomes we’re all hoping to achieve. But with Alzheimer’s, we were just given some leaflets and sent away. We were left floundering and frightened, with no idea where to turn for help or even what help was available.
