When Dan got here I had to face the fact he was dying but the staff took the fear away. I could be his wife again, we lived his last days together
Widow tells of finding comfort at darkest time
A brilliant Mirror series investigates the final taboo – death. How do we have a good death? How do we prepare for it? How do we talk about it to the ones we love most? We speak to those in the final days of their lives and their friends and families, and go behind the scenes at a hospice...
New mum Helen Hopkins was sobbing when she first walked through the door. She had almost turned back on her way up the drive because the big house meant her nightmare was now reality.
“It was a place people go to die,” explains Helen. “And my 34-year-old husband was moving in. I had to face what I’d been blocking out for months and admit ‘My Dan is dying’.”
Helen, mum to nine-month-old George, had arrived at a hospice – Sue Ryder Leckhampton Court, in Cheltenham, Glos, and 11 days later her husband of 15 months died there from a brain tumour.
But the care Dan and his family received transformed 35-year-old Helen’s views about death and is helping her grieve.
“They took the fear away,” she says. “They allowed me to be Dan’s wife again, not his carer, so we could live those last days together.”
Now Helen is backing a campaign to get us all talking about death.
In 2008 a Dying Matters campaign aimed to break this last great societal taboo. But research by charity Sue Ryder shows that, more than a decade on, we are still dodging the issue and denying ourselves “a good death”.
They found 70% of people have not discussed their death with relatives, 68% haven’t written a will and fewer than 10% have planned their funeral.
Yet 94% of us know who we want to spend our final hours with and 60% have considered where, with most wanting to die at home or in a hospice.
But 66% have no idea they can write that in an Advance Care Plan.
Heidi Travis, Sue Ryder CEO, said: “We all need to start talking about the D-word. Deciding in advance how we want to die and having a conversation with loved ones will help ease and demystify the process.”
I spent a week at the hospice, one of seven run by the charity, and met staff, patients, families and volunteers.
Three-quarters of patients have cancer and others have degenerative or neurological conditions.
And expert palliative care means half will return home after a first stay with their symptoms eased.
Yet consultant Dr Paul Perkins, 47, explains: “There is still the stigma that this is where people come to die – and death is a taboo. We live longer and die in hospitals, not at home, so everyone is less aware of death – and it scares us. Our job is to make it as good as it can be by easing the physical process of dying.
“We can’t ease the fear of leaving loved ones behind but we can help patients see that they’ve lived well.
“And then, when that person is in their last hours – comfortable, warm, knowing that they are loved – we can look after the people holding their hands “That’s what hospices are about – loving people.”
I feel that sense of tranquillity and compassion while touring the wards with Head of Clinical Services, Debbie Williams, 46, who is a former oncology nurse.
“I’ve been privileged to see many people die beautifully here,” she says.
“When patients first arrive they’re scared they will be writhing in agony when they die. We explain that they’ll start to sleep more, then be in and out of consciousness and gradually their breathing will slow and their body will shut down. Then they’ll die.
“I don’t use euphemisms like ‘passing’ or ‘slipping away’. It’s important to be honest.”
She goes on: “Of course it’s sad and sometimes I have a cry on the way home.
“My mum died suddenly five years ago, just weeks after being diagnosed with cancer and after that I talked to my dad about his wishes.
“My husband’s a paramedic and we talk to our kids, who are 12 and 16, about dying and where we’d like our ashes scattered. It doesn’t have to be a big issue.
“You can do it in a casual way when something comes up on telly. But talking about death removes the stigma and helps us live our best lives.”
During my visit several patients are very close to death and the emotion of their families is palpable.
They sit with their loved ones,
Talking about death removes the stigma and can help us live our best lives
DEBBIE WILLIAMS HEAD OF CLINICAL SERVICES AT LECKHAMPTON COURT
popping out for a quick break in the family lounge.
Volunteers are on hand to chat to patients and relatives. One volunteer, Pat Howard, 64, says: “I wanted to give something back after Mum died here in 2005. We’re trained to handle difficult conversations but it’s about listening and empathising.
“A young mum once asked me ‘How do I tell my son I am going to die?’
“I arranged for our family support team to talk to her but also said ‘When my father died we’d look for the brightest star in the night and say That’s Dad’. She found that a help because her little boy had bought her a star for Mother’s Day.”
Patient JJ, 67, has chronic obstructive pulmonary disease which worsened when she got flu and pneumonia.
Husband Bob, 70, was spending every day at her bedside.
“She had antibiotics in hospital but they didn’t work and she was transferred here for a bit of extra care,” he says. “The staff are amazing,” smiles JJ beneath her oxygen mask. “Nothing’s too much trouble. You are a person, not a number. And I’m as comfortable as I can be.”
Then I meet “S”, who has advanced oesophageal cancer.
The disease has affected her vocal cords so she talks in a whisper.
“I can’t swallow properly so I don’t want to eat,” she says. “But they always find something I can fancy – yesterday I had the ice cream from the middle of an Arctic Roll. Lovely.” She squeezes my hand. “I can’t change things,” she says, “but I have asked for Holy Communion because I think I’ll find it a comfort.” S died a few days later.
Chaplain Rob Pestell, 65, is the least “churchy” man you could meet.
He explains: “Some patients see the dog collar and say ‘Sorry, I’m not very religious’, I respond ‘That’s good, neither am I!’
“I get to know what makes them tick – and I say ‘That is your spirituality’. Most patients have accepted they are dying but some say ‘I’m a hopeless case’. I try to help them see the value of their life.”
Kath Keogh, 57, teaches hospice staff to talk to patients about death. “We can all do it better,” she says. “We have birth plans but don’t say how we want to die. Death is seen as a failure, not a natural part of life.”
Hospice catering assistant Claire Pemberton-James, 46, says her job is a privilege. She meets all the patients as she tours wards taking meal orders.
“Many don’t want anything,” she says. “But if I give someone four peas and half a fish finger and they enjoy it it’s the best feeling in the world.
“You really get to know them through chatting every day or sitting holding their hands.”
Claire was so inspired by her work that she wrote a moving song called
The House on the Hill “...where love resides and the weary can rest”. It was performed at the annual Lights of Love service and a video features on the website.
Receptionist Mandy Edwards, 63, is the first person frightened relatives meet when they arrive.
She started working at the hospice after her father died there in 2008. Six years ago her husband Bob, 62, died there too. “His death confirmed everything that is wonderful about this place – the peace and support,” she says. “Not one person walks through that door willingly the first time.
“So I’m here to say ‘You’re here now – we are going to look after you’.”
Helen Hopkins felt that empathy when she arrived to book her husband Dan into the hospice last July. He worked for a bank and she was a hospital administrator when they met in 2011. But four years later Dan got an itchy mole on his back, checked – and was told he had malignant melanoma. Three years later it had spread to his brain.
“Dan never wanted to know how long he’d got,” she says. “So we never talked about him dying.
“Then last June he got much worse. One night he didn’t recognise me and I started to realise he wasn’t going to get better. But when they mentioned the hospice I was terrified.
“When Dan arrived in his room he was very sick and a load of nurses came and took over. That’s when I realised I was just his wife again.
“I was terrified of being a widow on my own with a nine-month-old baby.
“But the process of Dan’s dying was dealt with and I could talk about it.”
Helen was waiting at Dan’s bedside for 11 days. But he died on the night she popped home to get a change of clothes. “The nurse rang and said he’d gone,” she says. “When I got back to Dan there were no machines attached he was so peaceful and there were flowers on the pillow.
“I opened the window to let him fly.” Since Dan’s death Helen has raised £7,500 for the hospice and returns frequently with toddler George.
“I feel close to Dan here,” she says. “I can’t thank the staff enough.
“It’s awful when you lose a loved one. But in a place like this, with people who understand... it isn’t as scary as you think.
“They are here to hold you.”
■ For more information, go to sueryder.org/thedword
It’s awful when you lose a loved one. But in a place like this, it isn’t as scary as you think
HELEN HOPKINS WHOSE HUSBAND DAN DIED IN SUE RYDER HOSPICE
The staff here are amazing. Nothing is too much trouble to them. I’m comfortable
HOSPICE PATIENT JJ WHO HAS A LUNG CONDITION AND GOT PNEUMONIA & FLU