A final gift of love and laughter
The bond forged between the dying and those who volunteer to be their companions is truly unique. Now, as a campaign is launched to recruit more helpers, read these humbling stories
Every Thursday David Parkes looks forward to the bacon sandwich he shares with his closest friend Michelle Craven at their favourite cafe. Afterwards, they move to a nearby park where they sit and watch planes taking off from the local airport.
Sometimes when they drive to the shops, they deliberately take a longer route to enjoy the scenery together without speaking.
It’s like any other friendship, full of promise and laughter and — in their case — a shared love of football. But it’s a close bond that is founded on an unusual basis: David has terminal kidney and bone cancer, and Michelle is a mother- of-two who volunteers as his Marie Curie end-oflife companion.
For David, who lives alone in Bradford, Michelle’s visits are a lifeline and a welcome distraction from the realities of his condition. The 58-year-old retired shop owner says: ‘When Michelle walks in, it’s like a breath of fresh air. We talk about normal life and Leeds United and not illness. I live alone, having never married, and without Michelle’s visits, I’d be trapped within these four walls.
‘I was diagnosed in June 2018, and as soon as the chemotherapy began, my appetite went. I dropped from 18st 4lb to just over 12st in a couple of months as the chemo removed my ability to taste most things and I lost interest in food.
‘But then Michelle had the idea of taking me out for a bacon sandwich on a Thursday. She asked what I used to enjoy, and when I mentioned bacon, she said: “Let’s find the best bacon sarnie in Bradford!” every week we went to a different cafe until we found the tastiest one. The companionship is lovely. We don’t even need to speak, we’re so content with the company. She has transformed my life.’
DAVID
met Michelle six months after he was diagnosed with cancer in June 2018. He was with his sister elaine, 56, when he was told the cancer was terminal.
‘It came as a total shock,’ he recalls. ‘I was expecting to discuss my cancer treatment with the consultant. Then he told me I had between three months and three years to live.
‘elaine burst into tears but I just sat there in silence,’ he says. ‘When I started chemotherapy, elaine was trying to look after me, but she has a family and four children to care for, and she became very exhausted and low. I hated seeing the toll it took on her.
‘We contacted the charity Marie Curie and asked for help. Shortly after, they matched me up with Michelle.
‘She supports the same football team as me, Leeds United, so we had lots in common. I’m still amazed they managed to find someone so well suited to me.
‘Things could be so much worse if it wasn’t for Michelle and my sister. I’m not lonely, I have a routine and in the one to two hours I spend with Michelle each week, I’m able to go out and feel normal.’
Michelle, 42, who is married with sons aged 14 and eight, says: ‘I have a part-time job as a complementary therapist but I wanted to make a difference in my spare time and make life a bit better for someone on their own. I already volunteered to do massages at the local hospice, and I kept thinking: “What if that was me one day?” I knew I’d want someone to help, so it made sense to volunteer and help while I’m still active and able.
‘I’ll never forget meeting David. He said: “you might only have to do this for six months,” referring to his diagnosis, and I said: “Nonsense, you’ve got 30 years,” and we both started laughing.
‘We instantly clicked and now I know just by looking at him how he’s feeling. If he’s in pain or having a bad day, I’ll just sit with him at home, and sometimes just watch him sleep, knowing he has someone with him.
‘But if he’s good, we’ll go out, and
I set him challenges such as walking with his stick in the park.
‘eating has been a real problem for David during chemotherapy, so after the success of our bacon sandwich hunt, I helped him create a food diary of things he could still taste, that he fancied eating.
‘It’s so gratifying to see him put on weight, and seem so much happier in himself. volunteering has brought me genuine joy. It’s a unique experience, and one of the most rewarding things you can do.’
More than 600,000 people die in the UK each year — 280,000 deaths are in hospital. Out of these, it’s estimated that 75 per cent need palliative care but many, around 110,000 people, miss out. One of the key reasons is a lack of staffing and facilities.
‘There’s a real shortage of volunteers for end-of-life care across the country,’ says Julia Bearne, community engagement and development manager for Wales and Southern england at Marie Curie.
‘As a society, we feel we no longer know how to care for those who are dying. People don’t think they can help but they can. There are many people out there capable of offering kindness, support and care.’
It’s a shortage that will only get worse, with an estimated 160,000 more people in england and Wales needing palliative care in 20 years.
Now Marie Curie is teaming up
with Helpforce, the NHS volunteer charity the Daily Mail has partnered with, to increase end-of-life volunteering by recruiting people over 18 who believe they can help. The Mail’s campaign has swelled the Helpforce volunteer ranks by around 34,000, with 22,000 placed in roles so far. Claire Collins, a bereavement counsellor at the Marie Curie Hospice in Hampstead, North London, says: ‘When people are dying, they want overridingly to protect their family. But volunteers and staff allow them to be more honest. They can tell us how they feel, or what they are worrying about. ‘They can make decisions and be themselves without having to put on a brave face — it offers an island of peace in a situation they can’t otherwise control.’ It’s not just patients: a YouGov survey last year found that more than half of carers for a friend or family member with a terminal illness said they got little or none of the support they needed, while eight in ten people caring for terminally ill loved ones say they have felt lonely or isolated. Volunteers can make a big difference to patients and their families, says Julia Bearne. ‘Just being there and listening can help.’
After retiring as a critical care nurse six years ago, Carolyn Panton volunteered as a Marie Curie endof-life companion at Musgrove Park Hospital in Taunton, near the home she shares with her husband.
Carolyn, 63, says: ‘I was always aware that on busy wards, some dying patients didn’t have anyone to hold their hand and just listen.
‘So when I retired, I signed up as a volunteer. The first person I sat with who passed away was an elderly lady who had no family with her. She was unconscious but I held her hand, and said gently: “I’m here for you, you’re not alone.”
‘I remember being told in my nursing training that hearing is often the last sense to go, so I always include the patient in my conversation.’
But you don’t have to have this kind of experience to help. Anyone can do it. ‘Our volunteers include a farmer in his 60s, a retired engineer and someone who spent his life in industrial cleaning,’ says Julia Bearne.
‘We can also offer practical help, like making sure the relatives eat, making tea or sorting out help for a dog which is spending hours alone at home while their owner is visiting a loved one in hospital,’ she says.
Marie Curie provides volunteers with two-and-a-half days of training in health and safety, communication skills and bereavement.
As a companion herself for seven years alongside her job organising the volunteers’ service, Julia Bearne knows what a difference a volunteer can make.
She says: ‘The first patient I was with as they died was a single lady in her early 50s who felt very isolated. When I walked in she told me: “I’ve just had a bit of bad news.” She knew she was dying and she talked about her worries, but as she shared her innermost thoughts, the tension seemed to leave her gradually.
‘ I sat with her until she lost consciousness and she died overnight — but I saw the difference in her over those final hours.’
Julia Bearne recalls the anguish of one devoted husband, John, who she supported through his wife Sheila’s final three days, as she lay unconscious on a hospital bed. ‘He blurted out: “My wife was knitting me a jumper and it’s just sitting on the side at home and she’s never going to finish it now, is she?”
‘The pathos of the unfinished jumper was his way of voicing a realisation that she wasn’t coming home. They were both 85, had been married for 64 years and had no children. They only had each other. I can’t change grief but I was there to listen. I quietly acknowledged what John was saying, and chatted to him about Sheila.
‘Every day, he held her hand and told her how much he loved her. Even though she was unconscious, he didn’t want her to be alone in the evening, so three end- of-life companion volunteers took turns to sit with her once he had reluctantly left her side.
‘Each evening, John had to set off for the 50-minute drive home before it grew too dark for him to cope. He would kiss her gently on the forehead and ask us: “Can you see her into sleep for me?” ’
Three days after Julia met them, Sheila died. ‘I know it made a huge difference to John not to be alone as he lost Sheila. The support helped him face her final days and cope with his own future.’
Bereavement counsellor Claire Collins adds: ‘ The challenges of modern life mean family can’t always be by a bedside. After they lose a loved one, they may feel guilty that they didn’t do enough — but they can’t give everything up. Knowing a companion was beside a loved one before they died, or when they died, makes a huge difference to how they cope afterwards.’
Carolyn Panton agrees: ‘Where I live it’s quite rural and often family can’t get to their relative in time. I live close to the hospital, so sometimes I’m called because a patient is alone and nobody can reach the family.’ The support doesn’t stop after the patient’ s death. ‘Many families are in shock straight after a loss, and it’s so important to have someone there gently guiding you through the process of registering the death,’ says Julia Bearne.
Carolyn recalls one particularly affecting experience: She says: ‘I’ll never forget this couple in their 70s. The patient was receiving oxygen via a mask, and beside the bed was his wife, who had cared for him tirelessly, despite being in a wheelchair herself.
‘When I arrived it was clear she hadn’t eaten — she looked and felt terrible but she hadn’t wanted to leave her beloved husband to get any food.
‘I promised I would sit with him while she left for a sandwich. Once she had gone, he begged me to remove his oxygen mask so he could talk to his wife properly. In my role as a volunteer I can’t make clinical decisions but I conveyed his wishes to the nurse in charge.
‘She assessed him, and removed the mask, and when his wife came back into the room, he asked her for a kiss. Seeing them sharing that kiss, with so much love, showed me that you can make a real difference. It also showed me the incredible power of love.’