When former Carlisle United player Tony Hopper developed motor neurone disease, there was huge public support for his battle against the disease.
But what people probably don’t know is the importance to his family of the care he received at Carlisle’s Eden Valley Hospice.
Despite his wife Sue being a trained nurse, she had struggled to meet his needs at home as she juggled working and being a mum to three young boys.
She is sharing her story now to support the hospice’s campaign for supporters to leave gifts in their wills which are a vital fundraising lifeline for the charity.
Sue said: “Tony was having really bad muscle spasms. He was in a lot of pain. His mobility significantly dipped.
“We were looking at each other and thinking, how are we going to be able to manage this?
“I found it really difficult to manage his symptoms at home because you are relying on Cumbria Health on Call and GPs out-of-hours and district nurses.
“At home, there’s a lot of pressure. If you are a carer for somebody, and they need a lot of care, 24/7, it’s very difficult. I’ve got three kids, I was working, the boys were all at school.”
Tony was diagnosed with MND in January 2017, and died aged 42 at Eden Valley Hospice on October 9 the following year.
Sue and their boys Daniel, Adam and Jack, who were then aged 11, nine and five, were able to stay in the hospice’s flat so they were together during Tony’s final days.
“I was a student at the hospice when I was doing my nurse training, so I was aware of the services, and I knew everybody was going to look after Tony really well,” Sue said.
“Just coming into the hospice, that weight is lifted because somebody else is helping you. There’s somebody there saying, right, we’re going to help you, let’s have a look at your muscle spasms, let’s try and get on top of that pain.
“Let’s think about how we can get you sorted so when you go home, you’ve maybe got some care in place so that you will be able to manage with your mobility, let’s get some equipment in.
“It was just realising, actually, we’re not alone. There is a service here that can help us. We were in for maybe a week and then we went home in a much better place to be able to cope.”
Sue described feeling overwhelmed at home when she failed to ease Tony’s symptoms and said the situation was devastating for the whole family.
And she said the positive experience Tony had at Eden Valley when he spent time there for symptom control meant when he returned for end-of-life care it didn’t appear scary coming back.
Sue said: “The hospice was just phenomenal. You can become a carer rather than husband or wife. But then when you come to the hospice, you can go back to being husband or wife because the care is taken care of.
“So, there is this nice kind of transition back to actually just being there for somebody. You don’t have to worry about anything else.
“That feeling, when you just walk in to the hospice and somebody’s going to help you. It’s amazing.
“We had the flat. The three boys came, they stayed. My mum came and stayed over. Tony’s family were able to come, because there’s plenty of space.
“The hospice accommodated his friends coming in to see him. Tony’s friends were a massive part of his life. His friends would come and sit with him.
“They were all absolutely amazing.”
Eden Valley Hospice and Jigsaw, Cumbria’s Children’s Hospice in Carlisle are among 143 hospices across Scotland, England and Wales taking part in the Hospice UK National Legacy campaign.
For details of how you can support the hospice through your will, visit https://www.edenvalleyhospice.org/giftinwill/
