Marvel-mad dad creates comic-themed ‘happy place’ after sharing his wishes to die at home

A devoted family man who admits he was living in denial after being diagnosed with a life-shortening illness has learnt to make each day count after finding the courage to open up about his fears and hopes for the future.

Scott Leadbetter is sharing his experiences this Dying Matters Week – a national campaign which encourages people to be better prepared for the future and speak more freely about dying and bereavement – as he thanks St Catherine’s Hospice for helping him to make important plans and enjoy precious time with his loved ones.

Scott and his wife Stacey say that having difficult yet honest conversations have actually helped them to come to terms and cope with their circumstances, allowing them to prioritise spending quality time doing the things which really matter to them.

Scott, 48, who has chronic obstructive pulmonary disease (COPD), has received specialist support at St Catherine’s Hospice in Lostock Hall and at his Penwortham home over the last year, through the charity’s community Clinical Nurse Specialist (CNS) team.

“St Catherine’s has given me the inspiration to enjoy life again,” he says. “I was in a mess before. I was in a depressive hole and I was in a lot of pain. But thanks to their help I feel re-charged and like a completely different man.

“They’ve helped me to focus on the here and now, to live for today. I’ve learnt to appreciate the small things in life, to be grateful for the positives and not to dwell on the things I can’t do anymore. I was so angry before because there was still so much that I wanted to do. I felt like my life had been stolen from me.

“But our St Catherine’s nurses have helped us both to accept that we can’t change what direction my condition is taking me in, but we can make the most of the time we have and enjoy the things which matter the most to us, like spending time with my grandchildren. I honestly don’t know where we’d be without St Catherine’s.”

Scott was diagnosed with COPD seven years ago after experiencing numerous chest infections and pneumonia. The condition makes it difficult for him to breathe and causes him to feel incredibly tired; it has resulted in him experiencing severe emphysema and slow progressive heart failure, and he has to spend most of his days resting.

“I push myself to get up and get dressed, but even that can be exhausting,” he explains. “On my good days, I can go out for a little bit; I go shopping with Stacey or round to my daughter’s for tea, but I know not to push myself too hard. That was difficult at first though. I used to have such a physically active job as a mechanic and I do really miss work and being able to get out and about.

“St Catherine’s has helped me to find a better balance. I might not be able to do as much as I used to, and I might need a bit of extra help, but if I pace myself I can still do things which are important to me.”

Stacey, 34, a senior nursing assistant, says: “Scott made the decision just before Christmas to come off some of his medication and begin his end-of-life and palliative care pathway. Our St Catherine’s community nurses Chelle Cushing and Tracey Ginger have listened to his views and they’ve explained everything to him, and given us time to process everything. Now they’re putting things in place to meet his wishes and help us to have the best end-of-life journey as possible.

“It might sound silly but since then, we have come to accept what’s happening and we feel at peace; we actually feel happy. It’s like a huge weight has been lifted. Scott’s priority now is to be surrounded by love and happiness.”

She adds: “When Scott was in the hospice, I rallied round our family and friends and we gave our bedroom a huge makeover as a surprise for when he came home. It’s our living space now because it’s where he’s most comfortable.

“There’s seating for guests and there’s lots of Marvel comic items because he’s a big fan of Marvel and especially Iron Man. His grandchildren call him Iron Grandad.

“He loves Elton John too, so we sit together and watch his concerts and other films in the newly decorated bedroom; it’s his happy place, and he says it will be a nice place for him to spend his final days and hours. We know there will be an end, but it certainly won’t be a bitter one.”

The couple also credits St Catherine’s for alleviating their fears of talking about death and planning for the future, as they back Dying Matters Week and encourage everyone to think about – and communicate – their wishes regarding end-of-life care, wills and funerals ready for when the time comes.

Scott, a dad-of-three and grandad-of-seven, explains: “They’ve helped me to open up about my wishes for my final days, and how I want my life to be celebrated. Stacey and I couldn’t talk about anything like that before; we bottled it all up because we were in denial and we couldn’t accept what was happening. It was like life was on hold and we were in turmoil, letting the condition control everything about our lives.

“But now those subjects don’t feel taboo to us anymore because Tracey and Chelle have helped us to have those conversations. They’re honest about what we should expect and that’s so refreshing. They answer any questions we have and they don’t judge you for how you’re feeling.

“I’ve told them that I want to die at home if I can, so they’ve put measures in place to accommodate that, but I certainly wouldn’t mind being in the hospice. And I’ve spoken to Stacey about what car I want at my funeral. I’d rather be part of the planning and have my say now while I can.

“It’s reassuring to know that everyone knows what to do when the time comes; they won’t be trying to guess what I would have wanted, and having these discussions has put my mind at rest that Stacey and my family are on board with my wishes too.”

Scott has stayed on the St Catherine’s inpatient unit in Lostock Hall on two occasions for pain and symptom management, and was surprised to discover what hospices are really like.

“I used to think that St Catherine’s was only for cancer patients, and that it’s just where people go to die,” he says. “I didn’t realise that people can go to the hospice and come home again, or that there are nurses who can look after you in your own house.

“It’s a fantastic place and I felt honoured to be there. Everyone from the cleaning staff to the doctors and nurses know your name. They got me an electric scooter so I could go round the grounds – it’s such a beautiful setting and it was great to be able to get out into the gardens on my own. It meant a lot to me to keep my pride and independence. Stacey and I went to the Mill café and shop as well. It just felt so nice to do something normal together, and it was like a little day out. It was marvellous.

“They even had a white board in my room where you can write ‘what’s important to me today’ and they will do what they can to help you achieve what matters to you. It was sometimes little things like helping me to have a shave so I could feel more like myself again; I didn’t want to be a burden but they make time for you and really make you feel valued as a person.

“It just brings your spirits up and I felt like a million dollars after my time in St Catherine’s.”

• If you would like to help St Catherine’s be there for more families like Scott and Stacey’s, and enable the charity to continue taking care of the small details as well as the big issues; pledging a monthly donation of your choice will allow the hospice to budget for the future at a time when fundraising is so uncertain. Please click here or call 01772 629171 to find out more about becoming a valued Regular Giver.

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