Bill and Jo on their wedding day

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

Bill, who continues to fight and campaign in his wife Jo's name, shares the pain of losing someone slowly to dementia.

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.

A photo of a framed picture of Jo at her graduation

Jo at her graduation

“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. 

A photo frame with a picture of Bill and Jo and a teddy

“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. 

Our dementia advisers are here for you.

“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."

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Whether you need a listening ear on the phone, practical tips and advice or a visit in person, Alzheimer's Society is here to support you.
 

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17 comments

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Dear Bill I to am sharing your story. I've been with my husband 49 year's and we to were joined at the hip. We first noticed things were not right 10 years ago and it took 5 years to get it confirmed. Then two and a half years ago he was sectioned. I go over that day many times. He's been in three hospital and three carehomes. The experience as been bad at times with the last home closing do to being inadequate. If I could have him home I would do it tomorrow but he's now 24 hour care. I visit him 4 times a week and although the home is better than the last one we still have issues with it but we keep fighting for him. I miss him so much and have many tears over him. So thank you for letting us know we are not on our own with this horrible disease.
Well done Bill. My wife Karen has the same diagnosis as Jo but has Young Onset so has been and is very challenging. Now in a care home medicated with Memantine and Trazadone which takes the edge off the challenging behaviour but given covertly because clearly Karen does not need medication, as she sees it. The loss Grief and Guilt are there everyday so any glimpses of recognition is a win. Early diagnosis perhaps would have given us more quality time but definitely understanding. Keep up the great work you are doing. All the best Wayne
In 2017 my wife was diagnosed with semantic dementia. For 5 years until 2022 I looked after her 24 hours a day, 7 days a week , 365 days a year until I finally collapsed one night and I had to accept she needed specialist care which she has now been getting at a wonderful private care home Metchley Manor in Edgbaston Birmingham The wife I had spent over 40 years of my life with really died in 2017 and now her memory of those years is gradually fading and every time I visit her it upsets me to see the effects of this dreadful illness Thanks I feel better for having said this - nobody will know how it feels unless they have been through it.
It is a struggle with guilt as unable to care for my husband who is in full time care , it’s sad to see for me the decline but he is happy , never complains , he is now 93 years
One of my carers mother was diagnosed with Alhzhemias 5 years ago she is was 96 yesterday. I desperately wanted to help her, as l am awaiting a NHS continuing healthcare assessment, l showed her a book l had bought of Amazon, its called the A to Z of continuing healthcare by Michael madalstrom. This book is what everyone needs to get free healthcare in your own home a care home, it has a green cover she used it at her mother's DST, and CHC was awarded. no one with Dementia show pay for care. Please fight for your loved ones, as my carer fought for her mum,
How long can alzheimers patient live? My mum has been diagnosed 4 yrs ago. She finds it hard towalk. Can not swallow food so easilÿ. Constantly dribbles. She is always asking where her paŕents are (theyre dead), she wanders around at night as she thi kń
Diagnosed 6mths ago. Unable to forsee what comes next. 64yr old female. Somewhat at a loss.
The experience, comments and feelings are touching. Make one wonders what the future hold, but we live in hope...
My husband has been in a care home for about 18 months , he was diagnosed with vascular dementia in 2019, I am also suffering from breast cancer , we have been told yesterday he has between three and six months left , he hasn’t recognised anyone fior the last few years , can’t speak , is deaf ,can’t see properly , it’s horrendous , such a cruel illness .
When in 2010 my wife, Jan, gave me a factoid five times in as many minutes, I sensed that our planned sunny upland retirement was about to plateau. The first five years required me to take on all the work I wasn't best suited for but Jan had done with skill and enthusiasm : cooking, sewing, admin (uggh!). She was the sociable, bubbly team member so our life became quieter but for me no less pleasant as we walked the countryside more and had lots of tea and buns in riverside eateries. By 2017 her speech stopped ( and she no longer responded to my jokes; boredom?) but she was still active but did sleep more. She had medication but seemed to do little so I swapped to vitamin supplements and good diet. We managed to get through the pestilence without medication but lots of advice from online doctors and scientist who seem to have success keeping their patients alive. We still walk daily, she eats well, sleeps well and as difficulties arise we deal with them. I'm fortunate in being half as big again so lifting her in and out of the bath/bed is not difficult and require no outside help. There are days when she looks unbelievably sad and I think it would be nice for her journey to finish but know that I'll not last alone. 48 years and not once did she lose her temper; my smiley lady.
My wife was diagnosed with Alzheimer’s about two years ago I can so relate to this story she forgets where the bathroom is and has some accidents I want to be with her every minute but I still work and need to pay bills it is so hard I get so overwhelmed with grief then try to pull myself together for her I’m trying now to get some in home help with her but I hate it I want to be the one who takes care of her.
I lost my husband 7 years ago and pain of grief does not get any easier He was in care for 3 years and had wonderful care. I visited him every day. However, every day I focused on who he was that day. Not who he was the day before or who he had been. We all wake up different day by day - we just don’t notice when everything is OK Look at the person you are with and who they are at the very moment you are in I don’t know if my husband knew who I was because he was unable to speak. But I held him and comforted him and learnt how to have one way conversations He was always there - just slightly different
I suppose I am in denial, my wife was diagnosed 5 or 6 weeks ago with alzheimers dementia, but I have still to accept it. I fear for the future, I am deaf and speaking to someone on the phone is a struggle, I dont know what to expect, already I do all the cooking and all the grocery shopping.
Dear Bill. Thank you for your courage and strength in sharing yours and Jo’s story. I’m in a similar situation where my husband refuses to see he’s GP. The grief I’m feeling is at times overwhelming but I know he’s aware on some level that things are not right. I’ll keep on day by day and see what happens and try to get a diagnosis so I can get him all the support available. Lots of love to you Bill.
Bill thank you for sharing your story. It helped to read it. Stories like yours remind us we are not alone caring for our loved ones going through the this horrible disease. Sue my husband would not go to the gp when I tried to get him to go ( from fear of the result I am sure) but he did go when our children asked him to go for all family.
So powerful - pain and love and frustration - you manage to put into every line of your story - this will help many facing a similarly story - thanks Bill
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