‘Dementia care is where cancer care was 30 years ago. We were left floundering and frightened’
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.
It feels to us like dementia care is where cancer care was 30 years ago. But the Government can’t ignore the fact that one in three of us will be affected in some way by dementia, and not only old people. The medics say there’s little they can do because, currently, there are no effective treatments available. This creates a sense of isolation. There’s also a stigma around dementia. We didn’t tell anyone apart from family and very close friends. Yet we hadn’t had any problem telling people when Frank was diagnosed with prostate cancer.
Through social media, I discovered and contacted Alzheimer’s Research UK. I also found Join Dementia Research, and a drug trial that was recruiting patients who carried a particular inherited gene, which Frank has. His mother also had Alzheimer’s. It’s a double-blind trial, which means we don’t know if he was receiving the actual drug – known as Alz-801 – or the placebo. There’s some evidence that if it’s given early enough, it can slow down deterioration. After 18 months, everyone on the trial has now been given the actual drug. I rather suspect Frank was on the placebo before, but we won’t know until the data becomes available.
Transitioning from being a partner to being a carer was very difficult. I resisted it for quite some time, until I acknowledged that I had to face reality. Now, caring is a 24-hour, seven-days-a-week role for me. Frank lost all his independence in the first lockdown – being confined at home definitely had a detrimental effect on his condition. We no longer have an equal partnership. Before, we made every decision jointly, whether it was about buying a car or taking a holiday. Now, even the small decisions are mine alone to take. I know him so well, and hope I always do what he would have agreed with and what’s in his best interests.
Frank is aware that he can’t do so many things anymore, like dress himself, and it’s hard for him. We moved house the same month he was diagnosed, so he’s never learned his way around this house, and cannot find the bathroom. He used to be a keen gardener, but now he can’t even work out how to switch on the lawn mower.
Socialising is tricky, because he’s unable to follow the ebb and flow of conversations, which makes him feel isolated. He can’t follow films either, so we can’t discuss them afterwards. It’s just another loss in a whole series of losses. Sometimes, I do feel very lonely.
Getting involved with Alzheimer’s Research UK helps us both to feel we are doing something positive, and removes the embarrassment and stigma. I’m proud that Frank and I are ambassadors. Even if I can’t help what’s happening to him, I feel we’re playing a small part in changing the future for others.
It’s disappointing that the new drug, donanemab, won’t be prescribed on the NHS on the grounds of cost, even though it’s been approved. I understand that the NHS has to manage a budget, but the hidden costs of Alzheimer’s on patients, carers and society are so high. Making these drugs available for people as soon as they are diagnosed really can change the future, preventing damage before it occurs.
We still go on holiday and to the theatre and concerts – recently we saw Bruce Springsteen – and Frank very much enjoys them in the moment. We just have to plan ahead. Eating out is challenging because Frank needs softer foods – like cottage pie rather than grilled chicken. If anyone had told me five years ago that I’d enjoy going to a dementia support group, I’d have laughed. But we have fun there, and use humour as a tool to cope. One of Frank’s many qualities was his wonderful, outrageous sense of humour, but that’s largely lost now. He is slowly deteriorating and no longer able to articulate how he feels.
As a practical person, I’ve made sure our wills are in order and that I have lasting power of attorney, but I try not to think too much about the future. I live in the moment. Frank is, and always has been, my soul mate and, hopefully, I am his. It’s a privilege to look after him. I know if the situation were reversed, he would do the same for me.
As told to Hilary Freeman
Alzheimer’s Research UK is one of four charities supported by this year’s Telegraph Christmas Charity Appeal. The others are Humanity & Inclusion, Teenage Cancer Trust and Army Benevolent Fund. To make a donation, please visit telegraph.co.uk/2024appeal or call 0151 284 1927
