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Ellie’s story: Dad’s care was the most precious gift

Ellie remembers her dad, Mike, and shares her experience of his care

Ellie Williams joined our Hospsicare team as Corporate Officer in November 2021 after experiencing our care first-hand:

“My Dad was an amazing man. He was a local man – born in Exminster – and he just lived for all of us. He would do anything for his family.

“In February 2019, we started noticing some changes in Dad. Initially, we suspected that he’d had a stroke. After a few weeks of tests and biopsies, it was confirmed that he had Primary CNS Lymphoma.

“When someone is diagnosed as being terminally ill, the question that occupies the mind is how long have we got? How should we occupy that time? Dad was ill during COVID times so it was very difficult. There were occasions where we were visiting him in hospital and we could only see him through the window.

“The following November, he had a fall at home and a scan showed that he had relapsed. Things were progressing and just a couple of months later, we were put in touch with Hospiscare.

A selfie of a family of four on a couch

“Quite honestly, Dad was really reluctant to accept Hospiscare’s help at the start. I think there is a tendency to not want to look Hospiscare in the face, because you know that your diagnosis and prognosis have shifted to a different place.

“Dad did accept the team in and started having wonderful visits with Rachel Hall, who is one of the community nurses. She was just fantastic – not only with him, but with all of us. We started off with some home visits and it was this wonderful mix of the medical side and the compassion too. There was this all-encompassing hug around all of us as family members.

“Dad really didn’t want to accept his prognosis that he was terminally ill. The community nurses were able to have delicate conversations with Dad about what he wanted for himself and for his family.

“As Dad got sicker, I didn’t know what to do sometimes. I felt a little bit lost. Even though I knew what his wishes were and what we could manage, it made such a difference to have someone to talk to. I could phone Hospiscare at any time and someone would give me a call back, whether I needed advice for something medical or emotional.

A man and woman wearing masks outside a hospital

“I remember Rachel so well specifically – her sense of humour brought such a lightness. A lot of people would be inclined to think that the visits would be depressing but it just wasn’t like that. There was a lot of laughter. It felt as though someone was leading us as although we knew which path we had to walk, having someone there as a guide and as a comfort was just amazing.”

Ellie’s dad was cared for at home by our community nursing team for almost a year. In August 2021, Mike’s condition deteriorated rapidly. Ellie explains,

“We got in touch with Rachel and she came out really quickly and reassured us that what we were seeing was normal. Dad had moved into a different place in his journey.

“At that point, we had a few conversations about the best thing to do for Dad. He didn’t want to be on the ward, he wanted to be at home, but it became apparent that we wouldn’t be able to give him the care he needed. We could give him the compassionate care and the emotional care, but he was in a lot of pain. We made the decision as a family, with Dad’s consent, that the best thing would be to come onto the hospice ward.

A woman holding a man's hand in a hospice bed

“Dad was brought to the ward by ambulance and I was allowed to be with him. I remember being greeted by Julie, the Ward Manager. We had to do our COVID tests and then we were shown to the most beautiful family room – The Wisteria Room.

“From the moment that we walked in, there was just this wave of compassion that hit us. We knew that everyone was working towards the best thing for Dad. The care and time that all of the nurses took with all of us, it was unbelievable. It felt like you’d walked into a family place.

“I had decided to stay with Dad on the ward. Our room had an extra bed and I still remember the beautiful crochet blankets that the volunteers had knitted for all of the beds – it just made it so homely. There was a TV so I could sit and watch films with Dad, knowing that if he was in pain, I could press a button and help would come. Regardless of whether Dad could respond, there was always that care for him. It was just so humbling and as a family member, it was the most precious gift.

A woman holding a dog and a man in a hospice bed

“We spent five days on the ward and I was able to stay with Dad the whole time. The room looked out onto the beautiful garden and we were able to have the doors open. We were also told that we could bring in family pets so my sister brought in her dog, Scooby.

“We had the most beautiful family day on the last day of his life. I’ll never forget how we were able to take Dad’s bed out into the garden and sit around him, with Scooby on his bed. We cuddled and told him that we loved him. Later, we put some Steve Martin films on because they were his favourite. We sat together as a family of five, as we would have done when we were kids, and it was just beautiful.

A woman and a dog with a man in a hospice bed outside

“That night, it was just Dad and I and we could tell that he had moved into the final stages. He was asleep and I remember the nurses pulled the reclining chair up to his bed so that I could be with Dad, as closely as I could be. I held his hand all night and had my head next to him and I just held him. Remarkably, because of the calm and the peace that the ward had given us, I fell into the most beautiful sleep with him. It was about 20 minutes after I woke up the following morning that Dad passed away.”