St Catherine's Hospice at Lostock Hall helped us come to terms with taboo subject of Dying Matters says Marvel comic fan and former mechanic Scott Leadbetter and wife Stacey

But in a way, that’s what happened when he was diagnosed and had to strive to come to terms with a life shortening illness.

Scott, 48, from Penwortham, has chronic obstructive pulmonary disease (COPD).

Just before Christmas he made the most difficult decision – to come off some of his medication. He says death is no longer a taboo subject.

He and wife Stacey, 34, a senior nursing assistant at Royal Preston Hospital, are determined to make each day count. But they admit they needed guidance from local hospice St Catherine’s to find a way to have the difficult conversations they needed to plan ahead.

Scott has received specialist support at St Catherine’s Hospice in Lostock Hall and at home in the last year through the charity’s community Clinical Nurse Specialist (CNS) team.

St Catherine’s Hospice Regular Giving appeal see here

The couple credit the hospice’s staff for alleviating their fears of talking about death and planning for the future and encourage everyone to think about and communicate wishes regarding end-of-life care, wills and funerals. They are sharing their experience in the hope it encourages others to realise how important it is to pay attention to what have been termed “dying matters.”

It was when Scott was in the hospice inpatient unit for pain and symptom management that Stacey, an assistant nurse at the Royal Preston Hospital, organised a suprise for her own superhero. The couple have been together for 17 years and she said: “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."

Scott, a father of three and grandad of seven, said he lived in denial after his diagnosis seven years ago following numerous chest infections and pneumonia. Severe emphysema and slow progressive heart failure mean he now spends much of his time resting.

He said: “St Catherine’s has given me the inspiration to enjoy life again. 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 any more. 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.

"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.”

Stacey praised St Catherine’s community nurses Chelle Cushing and Tracey Ginger: “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.”

Scott added: “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 any more. They’re honest about what we should expect and that’s so refreshing.”

“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. I used to think that St Catherine’s was only for cancer patients, and that it’s just where people go to die. 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.”

Stacey said: “Scott 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.”

* Dying Matters is a national campaign which encourages people to be better prepared for the future and speak more freely about dying and bereavement.

St Catherine’s Hospice says it welcomes donations to enable it to continue providing its service to the people of central Lancashire. To find out more about becoming a Regular Giver call 01772 629171 or see www.stcatherines.co.uk/donate

or here

For more about St Catherine’s Hospice and Dying Matters Week 2020 see here