Bill's story: "Someone who's dying of dementia does so over and over again"

Bill Wilson and his wife Jo had been together for 50 years when she was diagnosed with Frontotemporal Dementia with Alzheimer’s disease in June 2020 at the age of 66. 

They lived in Newcastle together before Jo, who was a nurse and midwife and also ran her own risk management consultancy, died on 21 January 2023.

"The pain doesn't go away"

“Life is hard without Jo. The pain in my heart doesn't go away. 

Someone who's dying of dementia does so over and over again in the eyes of their loved ones. 

"You lose a bit of that person, time and time again. You lose the essence of them too.

"I love to look back on old photos of our lives together...it just drives forward that love story, that bond that we always had. A lot of people would say: 'God, you two are joined at the hip', and yes, we were.

"We met at Newcastle Polytechnic on a Friday night band evening. I shouldn't have been there because I was only 16. It was just one of those things - I spotted her on the floor and thought, 'like the look of that'.

Jo and I were together for 50 years. We were a couple. We were part of each other.

“My story’s not a good one. As caregivers, we can be reluctant to entrust our loved ones to anyone else.”

"My realisation Jo had dementia"

For Jo, who had travelled the world and been headhunted by one of the biggest insurance brokers, work was her whole life. So Bill was shocked when, in 2006, she decided to leave it one day, packed up her laptop and left. 

After noticing the early changes in Jo’s personality and behaviour, Bill had found it difficult to persuade her to seek a diagnosis. Jo had been in denial and refused to go to the GP.  

The first time Jo died for me was at my realisation that Jo had dementia. 

"Because I knew then that it was the end. It was the end of something...the end of our lives together as I knew it.

“For a year I tried to get Jo to see the GP, but she refused. We both went to the GP for something else and the GP said her memory wasn’t good and referred her for a brain scan. 

"I felt guilty about how I brought it up in front of the GP, but I am glad I did. The diagnosis relieved the stress. It was no longer a suspicion.

Early diagnosis was always vital but now with the advances in drug treatments – that rely on an early diagnosis – it should be top of the list.  
 

"It took me two years to get a diagnosis of dementia for Jo. 

"It was almost like a double whammy. She died once because the GP had said, 'I'm sorry Bill but this is the situation'. And then the same death repeated again six months later when I had the final diagnosis from the consultant.

I decided that we'd take some cruises together. It was difficult because bits of her died day by day: the forgetting where the suite was, the forgetting that we were onboard a ship.

“I didn’t believe anyone could look after Jo like I could"

After her diagnosis, Jo attended a private day facility in a dementia care unit for three days a week. But before that, the couple had what Bill says was a terrible experience with Jo's care package.

“I didn’t believe anyone could look after Jo like I could. And I still believe that.  

As a caregiver, you don't always have the strength or the power to insist on good care. 

“I was paying for two hours every day, but they stayed for seven minutes in the morning and seven minutes in the afternoon. When people are coming and going, it's hard to build that trust. 

“Often a carer would go up to see Jo, then come down shortly afterwards, saying '…she's refusing…'

“I would ask: 'why? Have you sat with her? Have you asked her about the weather? Did she have a good night sleep? Talk to her.'

Tomorrow she might have forgotten who you are, but she will know your voice and recognise your tone. She'll have a feeling.

"Words don't always mean very much, but for people living with dementia feelings are so important."

"A different kind of grief"

When Jo was finally given a bed in a dementia care home five days before she died, Bill stayed with her. He was helped by a lifelong friend of Jo’s who, like Jo, had also been a nurse.  

I knew what I had to do was to take her there and put her into residential care. But I didn't want to. 

"It was as if we'd got back that deep sense of love, that you know what the person's thinking.  She might not have had capacity to say things but we both knew that she was going to die that week.

“I still talk to Jo even now. I just look across to the other sofa and tell her what's going on. 

“People say to me, 'it must be a lot easier for you now', like there’s a quota of grief and I’ve already used some up as she was disappearing.  

But the grief is completely different when someone dies to when you're watching them diminish. It's a totally different kind of grief.

"Alzheimer's Society are always there for me. And they continue to give me the opportunity to get that message out. 

"If I can keep Dr Jo Wilson in everybody's mind then that's great because then they're thinking about dementia, they're thinking about Alzheimer's Society - without whose support I'm not sure I would be here now."