Jules' story - "Dementia swept through our family"

Cyril was diagnosed with vascular dementia in 2018, aged 78. I used to drive 120 miles to where he lived to care for him after work. But as his dementia progressed, we decided he should move into a care home. I looked at about 20 before finding the right one.   

Cyril died in 2022. It was really hard, and I had to deliver the news to my family.  

“Dementia swept through our family”

In 2018, I began to notice signs of dementia in both Mum and Dad. Dad was getting confused, and it seemed like Mum’s personality was beginning to change. By 2020, Dad’s symptoms were more apparent, and he was diagnosed with vascular dementia at the memory clinic, aged 87. The consultation lasted just 20 minutes and felt very uncaring. We weren’t signposted to any support or given any idea of what the future might look like. Dad didn’t know what was going on. 

By 2021, Dad’s dementia had progressed. He put a plastic kettle on the hob, and the fire gutted the kitchen. I realised he and Mum needed more care to keep them safe, and I found an amazing carer called Becky. She became my lifeline. Becky explained that dementia often chugs along for a while, but then there is a massive dip. She was great at helping us to be one step ahead and prepared for the future.  

Getting a diagnosis for Mum was much harder. It was so difficult finding out what was wrong with her, or the type of dementia she had. The GP didn’t seem to have much experience in dementia, and things were escalated to the crisis team as Mum became aggressive to the point where I didn’t think dad was safe.  

A member of the crisis team diagnosed Mum with Lewy body dementia, aged 82. She should have been diagnosed much sooner; we noticed the first symptoms back in 2018 when she was just 76.

Jules and her mum

Mum’s diagnosis turned my world upside down. It felt like dementia had swept through our family. There were times when I would think, “Why me?” I couldn’t help but feel angry at the cards we had been dealt.

“I saw a side of dementia that nobody talks about”

I was determined to keep Mum and Dad at home for as long as possible, bringing in extra carers and making every adaptation we could think of. It felt like the home I grew up in turned into a care home. I had to keep reminding myself that this was what we had to do to keep Mum and Dad safe, but it didn’t feel like home anymore. 

I remember the day when Mum stood in front of me and asked, “Where’s Jules?” I always knew the time would come when she didn’t recognise me, but I couldn’t cope with it. I sat on my bed and cried. 

Mum’s dementia progressed very fast, and her aggression escalated to the point where all the cupboards had child locks and glasses and knives were removed. She would bite me and pull my hair. One night, she told me she wanted to kill me and described how she would do it. I was absolutely traumatised. That’s the side of dementia that nobody talks about, but it’s important to be open so other people feel less alone. It’s nothing to be ashamed of.  

“Lucy, our Admiral Nurse, was my lifeline”

Dad couldn’t understand what was happening to his wife. It was heartbreaking. It got to the stage where I felt that to protect him, we needed to move Mum into a care home. I called the Dementia UK Helpline for some advice and spoke to a dementia specialist Admiral Nurse. She had a wealth of experience; there was nothing she hadn’t seen before. It was so good to speak to someone who understood what I was going through.  

In October 2024, the day before Mum was due to move into a care home, she broke her hip. She ended up in hospital and later moved to a nursing home. That’s where I met Lucy, a local Admiral Nurse.  

At this point, Mum hadn’t spoken to me properly for over a year, but one day she turned to me and said, “I want you with me and I want to go home.” Lucy became our lifeline, stepping in to make it happen. There were a lot of people involved in bringing Mum home to die, including the GP, social workers and the crisis management team. Lucy spoke to everyone, came to appointments, and made sure all the pieces fell into place. She was just incredible. 

“I got my old Mum back”

Jules’ mum on a her final flight looking out the window

Just before Mum came home, I came up with the idea of taking her on a final flight. Mum and Dad had travelled all over the world together, and I desperately wanted to give her one last hurrah. Lucy supported the idea from the beginning and understood how important it was for all of us to make that one last special memory together. With her help, we made it happen. I chartered a small plane, and we took Mum up into the sky. 

During the flight, it felt like Mum’s dementia left her completely. As she looked out of the window, it was like she was looking out to heaven. Mum had the sun on her face. She ate cake and drank champagne. She even smiled for the first time in a very long time. The pilots were in tears by the end. For that hour in the air, I got my old Mum back. It felt like her final gift to us, and is a memory I’ll treasure forever. 

“Lucy helped us give Mum the goodbye she deserved”

After the flight, we brought Mum home for her final days. We converted the dining room into her bedroom, which had big French doors looking out into the garden. Mum loved Christmas, so even though it was February, we decorated her room for Christmas. We had illuminated stags peering in from outside and Christmas lights everywhere. Home was exactly where she needed to be. 

Lucy arranged for the hospice at home team to visit four times a day, and Marie Curie nurses to come in three nights a week so I could get some rest. Without Lucy, I don’t know how we would have navigated it all. She was always at the end of the phone, ready to help with practical advice or emotional support. She had such a calm presence, and she understood dementia in a way that gave me confidence. I don’t think people realise how vital that support is when you’re caring for someone with dementia, especially at the end of life. We would have been completely lost without her. 

On Valentine’s day, a week after Mum came home, I was sitting with her watching one of her favourite films, Cinderella. As the credits came up, I turned to her and gave her a kiss on the cheek, and she took her final breath. She was the ultimate romantic, so I just knew she would die on Valentine’s day. I was so grateful to have been with her. Lucy helped us give Mum the goodbye she deserved, and I’ll be forever grateful for that. 

“I’ve found my calling”

Jules

I left Dad sleeping upstairs after Mum died. The next morning, I was dreading going into his bedroom to break the news. But before the words were out of my mouth, he said, “I know what you’re going to say. Mum came to me last night, stood at the foot at the bed and said she was leaving us.” They had been married for 60 years. 

I felt there wasn’t the opportunity to grieve Mum, because straightaway, my attention had to turn to Dad. He would ask if he could use his bus pass to visit Mum in heaven. Lucy gave me advice on how to help Dad understand that Mum had died and suggested ways to talk to him.  

We kept Mum at home for three days after she died, which meant Dad could sit with her and process what had happened. But at Mum’s funeral, he asked who was in the coffin, and whether she would join us for dinner.  

Ultimately, Dad didn’t want to live without Mum, and he died six months later from a stroke.  

I had dedicated the last seven years to looking after Mum and Dad, and suddenly, I had all this free time. I didn’t know what to do with myself. But it felt important that I didn’t just throw the duvet over my head; I had to try to carry on with life.  

Now, I intend to dedicate my time to helping people living with dementia. I’ve put all my focus into setting up a charity in Mum’s memory, June’s Wish. The registered charity will grant people their final wishes at the end of their life – like Mum’s last flight. I feel like I’ve found my calling in life.  

If you know someone who is reaching the end of their dementia journey, then please reach out to us – we’d love to help more wishes come true.

Listen to Jules’ podcast episode