Ulverston's St Mary's Hospice dementia service launched

Losing a loved one is something we all dread.

Although if your loved one is one of the 944,000 people estimated to suffering from dementia in the UK today, the end can actually come as a relief.

“When Dad died it was a massive relief, like such a huge weight lifting,” explains Val Stangoe, Chief Executive of St Mary’s Hospice. 

“Of course, we were sad, but I think anyone who’s lost someone to dementia would say the same — you’re sad because that person isn’t with you anymore, but really you lost them a long time ago.

"It happens incrementally, in small steps. They’re progressively more forgetful, then maybe, like with dad, their personality changes. The person you knew has gone by the time they die.”

Val is sharing her family’s dementia story as St Mary’s steps into working with dementia patients and their families for the first time. 

She explains: “Hospices all over the country have, in the main, stood back from dementia because it’s such a massive challenge and so many of us struggle for funding already.

"Looking after people with dementia makes a difficult job even harder. For example, it’s hard to manage a palliative care unit if you have a family in one room with a dying relative with a patient with dementia wandering in from the room next door. 

“But the whole ethos of the Hospice movement is to make sure that people have a good death. The end of life with dementia can be really difficult.

"I looked at what happened with my own Dad, who really didn’t have a good death, and thought how can we say we’re here to facilitate people having a good death, but then we stand back when it comes to dementia?” 

St Mary’s recently recruited a specialist dementia nurse, working in partnership with Dementia UK. The hospice’s trustees have agreed to fund the post and its service for two-years, under-writing it by using funds from their reserves. 

The ambition is that having demonstrated the need for such a service, the Hospice will be able to generate funding to maintain and grow it. 

“We know dementia is increasing around the country and it with our growing elderly population locally we can say with a fair degree of certainty, that dementia cases will increase across South Cumbria.

"What we’re looking at now is really just the top of the iceberg. We’ve taken on one specialist nurse so far, and already we’re seeing the need in the community. 

“I want to be really clear though,” Val said, “This isn’t about St Mary’s riding in on a white horse and thinking we can fix everything — we don’t have the capacity to look after every single person with dementia. We’re saying that where someone has illness that means they need hospice care the fact that they have dementia too will not stop them getting hospice care. 

"We will work in partnership with all the other national and local organisations locally who support people living with dementia. Our ambition is to bring our specialist knowledge of end-of-life care to make sure that all those groups who can help are linked together around those families who need them.” 

Dad would have hated who he became

Val’s father, Peter, started to suffer from dementia many years before his death. He became more forgetful although for a long time he steadfastly refused to see himself as ill, or to recognise the diagnosis.

“My dad was a funny man. He was always laughing and making us laugh. He had a poem to recite for every situation. He’d drive us mad with it sometimes but he was such good fun. I remember when I was younger and he’d do one-man Shakespeare performances; Othello, Hamlet, leaping around the room and performing. He knew all the words. 

“Dad really valued his mind and his thinking — he thought education really mattered. He’d gone to night classes and worked up from being an apprentice electrician to being a lecturer. He’d worked so hard to improve his lot, and was proud of the excellent Scottish education system. 

“It was probably six or seven years before he had deteriorated to the point that we had to do something. My sister, Anne, and I were really worried about him, especially with us living far away in England.

"We tried to talk to him about moving nearer a number of times but he wouldn’t talk about it. 

“It got to the point where he couldn’t safely get himself into town anymore, he was frustrated and my mum, who was in her 80s herself, was suddenly caring full-time for someone who needed a high level of support.” 

Val’s parents left their family home, near Glasgow, and moved to South Cumbria so that Val could support them more closely. While she was able to help more, it made things harder in some ways too. 

“There was a big pride thing for my parents giving up their home. They’d been in their 40s before they’d bought their own place so leaving it was a big thing. Dad also loved to go into Glasgow on his own but he’d reached the stage where it was increasingly not safe for him to do that; he was liable to step out in traffic or get lost. 

“Once he was down here, he couldn’t go off on his own because he didn’t know where he was going.

"He would have told you that his dementia didn’t really start until he moved to Barrow, but in reality, it was when he moved away from everything, he knew that it became clear just how bad things had become.

"Either way, his life suddenly shrunk, and it was painful to see the impact that had on him. He reached the point where he just didn’t enjoy his life anymore, and he had been so full of life.”

Peter’s condition continued to deteriorate, but his death still came suddenly. He spent some time in respite care, allowing Val’s mum, Beryl, a much-needed break from the relentless needs of 24/7 care. 

“He’d get up in the night and wander around the house, so Mum would have to get up too. He’d start to make food, forget, and leave a hob on, for example, and he was by this point very unsteady on his feet. She needed a break, just for a few days, because she was exhausted.

“Of course, he didn’t see why he should go into respite. His view was that if Mum needed a break, she could have one and he’d look after himself, but that wasn’t an option because, whatever he thought, he couldn’t look after himself. And he couldn’t see the strain he was putting on her.”

He went to respite for the first time in 2017, and came home after a few days. Thanks to the break Beryl’s batteries were recharged and the whole episode had been a success, even if Peter was reluctant to admit it. When they repeated it the following year, it went very differently. 

Val went with her mum to collect Peter from respite, and they immediately noticed a difference in him. 

“He had vascular dementia and, I think, he must have had a bleed on the brain or something like that; because you could immediately tell that something was different. It was coincidence that it had happened while he was in respite, but Mum still felt guilty. 

“Up until that point although forgetful he’d never forget us. Suddenly he couldn’t recognise us at all. He didn’t know where he was, was hallucinating and punching out in frustration. 

“Dad was a lifelong pacifist — he’d marched to protest the Iraq war — he’d have been appalled at the thought that he might hurt someone. And I was worried about him going home with Mum and perhaps accidentally hurting her. It was awful for everyone.” 

Peter was sectioned and placed on the closed ward at Dane Garth, at Furness General, where he stayed for the next three weeks. 

“Those three weeks were awful,” Val said. “He didn’t know where he was. He wasn’t able to speak to us. He couldn’t walk anymore and stopped eating or drinking. He just stopped functioning. He became a shell. He must have been so frightened. And so were we.” 

At this stage Val and her family asked medical staff to stop treatment and let nature take its course. 

“Maybe it was my experience of working in a Hospice or maybe it was just that we knew him, and could see the dramatic deterioration, but we could tell he was dying, and that these were his final days 

“It was awful. The staff were kind and wanted to keep him alive by using a drip to keep him medicated and keep fluids going into him. The obviously thought we were terrible to want to stop treatment. After 24 hours on a drip, I spoke to a palliative nurse I knew who was able to come to the ward and help us. They took the drip down that evening and he died the next morning. 

“He died in a bay in a shared room with five other people; it was undignified for him and us, and it was awful for those other patients who had to hear that. Pulling a curtain around his bed didn’t stop them from having to hear it. 

“Through all of that there was no one who seemed to recognize that he was dying. We really needed someone who understood both dementia and dying.

"I hope that with our dementia service we’re able to make it so that fewer people go through what we went through. If we can work with families so they know what to expect, to relieve the pressure, hopefully we can make a really positive change,” 

If St Mary’s is successful in delivering the new service, it will be a legacy that Peter would have been proud to have helped inspire. 

Dementia facts and stats 

• 1,357 people on the Dementia register in the St Mary’s Hospice area 
• 1 in 3 babies born in the UK in 2022 will suffer from Dementia during their life time 
• Dementia is the highest cause of death in the UK (outside of Covid) 
• Today there are an estimated 944,000 people with dementia in the UK. This is expected to grow to over 1 million by 2025 and is forecast to hit 1.6 million by 2050. 
• 52% of the UK public know someone who has been diagnosed with dementia