“Knowing we did what he wanted for those final few months is a comfort to us all”

Memories of their youngest granddaughter sitting on the bed with her husband Gordon, laughing and playing, are some of the most treasured Margaret Hunt has of the last months of his life.

“They may not have had long together,” she explains, “but it was quality over quantity. Evelyn absolutely loved her granddad, and he got such a boost out of seeing her, and all of his grandchildren. He loved spending time with them and they were all absolutely fantastic with him, helping to look after him. That we were at home to enjoy that time with the grandchildren and the children means such a lot. Without the support we got from St Catherine’s, I don’t think we’d have been able to keep him there.”

Margaret is sharing her experiences of the St Catherine’s Clinical Nurse Specialist (CNS) team – who visit people at home across Chorley, Preston and South Ribble – as part of the Open Up Hospice Care campaign, which sees St Catherine’s join with hospices around the country this March to put the spotlight on the care hospices provide outside of hospice buildings.

Margaret and Gordon, who have five children and 10 grand-children aged between 2 and a half and 19, were visited by one of the CNS team when Gordon’s multiple conditions began to deteriorate.

Having battled rheumatoid arthritis for many years, he had undergone spinal surgery in 2012 which left him with reduced mobility and problems with his balance, eventually leading him to need a wheelchair. He’d suffered a heart attack in 2009 and then in September 2017 ended up in hospital battling the life-threatening infection sepsis. Gordon had also been displaying signs and symptoms of dementia before this, which deteriorated rapidly following the trauma.

Margaret and the family then faced an agonising decision as to whether he should undergo surgery to amputate his feet which had been left badly damaged by the infection.

But doctors advised that given Gordon’s other conditions, the ordeal of such a major operation could take a major toll.

Margaret explains: “They didn’t even know if he’d get through the anaesthetic or if he’d be able to come out of hospital after going through something like that. His condition had gone down fast after the sepsis – his dementia in particular became much worse – but he knew and we all knew that being at home was what was the most important to him.

“He wanted to be surrounded by the people who loved him, in a familiar place. As a family we decided we couldn’t put that at risk so we felt it was better he didn’t go through with the operation. Instead we focused on getting him home. As Gordon’s condition deteriorated further over the following months, the support we got from St Catherine’s helped to keep him at home, to keep him comfortable, and to die at home. Knowing we did what he wanted for those final months is a comfort to us all.”

Their CNS helped with a range of issues, including helping to manage Gordon’s pain more effectively. She helped source equipment they needed – including a special bed – and was a constant source of reassurance and support for Margaret.

“She was somebody to talk to, somebody to understand,” Margaret, a retired mental health nurse said. “She allowed me to talk about things, which is a huge part of that process – yes you have your children to talk to, but they are suffering as well.

“And she really helped Gordon with the pain. His feet were in such a bad way – he’d lost toes to the infection – we didn’t know what to do. She set up a syringe driver and monitored his dosage to ensure he was getting what he needed. She was never rushing and always had time.”

The couple, who were married 49 years, also benefited from the St Catherine’s Befriending Service. Each week one of the volunteer befrienders visited them at home in Lostock Hall – allowing Margaret to take a much-needed break from her caring duties, knowing that Gordon was safe.

Margaret, aged 71, said: “I very much wanted to be the person who looked after Gordon – I’d spent years caring for others as a nurse; I wanted to do that for him too. I didn’t want to just leave him with anyone – but someone connected with St Catherine’s I felt had the same ethos, I felt I could trust them. There is something very special about St Catherine’s.

“Those couple of hours each week when I would go out for a coffee with a friend were really valuable to me. It really helped a lot.”

Margaret said she was happy to support the Open Up campaign to raise awareness of the services St Catherine’s provides at home, admitting she did not know the breadth of support the charity provides.

“I thought St Catherine’s was just for people with cancer,” she said. “I never knew it was there for people with all kinds of life-shortening illnesses. And I didn’t realise there were nurses who came out to the house.

“All the way through his illnesses Gordon would tell me ‘I just want to be at home, with my family, with you’. Right up until the end he’d look me straight in the eye and tell me ‘I really love you’.

“It was important to me he was at home when he died, where he knew he was loved. The support we got from St Catherine’s allowed that to happen.”

How you can support the Open Up campaign

St Catherine’s is calling on the Central Lancashire community to join with them and the wider hospice movement in March and beyond in whatever way works for them.

Ideas of how you could show your support include:

• Organise a bake sale or coffee morning
• Set yourself a goal by signing up to one of the hospice’s sponsored events – choose from the daring Firewalk on June 23rd; Moonlight and Memories Walk on July 6th; or Manchester to Blackpool bike on July 7th
• Collect spare change at home – every penny really does make a difference
• Open Up your wardrobe and donate any quality pre-loved goods to the hospice for sale in our charity shops across the area.
• Connect with us on social media @StCatherinesPre and help our messages reach further
• Donate an unwanted gift as a raffle or tombola prize for the hospice
• Cook up a storm by taking part in the #TasteOfHome initiative which encourages people to cook a dish which reminds them of home and then invite family, friends, neighbours or colleagues round to dinner in return for a donation.

For more information contact the hospice’s community engagement team on 01772 629171 / email fundraising@stcatherines.co.uk.

Share with your friends!