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Ellie’s story

Ellie’s story

Ellie and her father, Michael, spent his last few days together in the ward in Searle House

Hello

I’m Ellie, and I’d like to tell you about my lovely, wonderful Dad, and how Hospiscare helped him and our family after we received the devastating news that he had been diagnosed with Primary CNS, a rare cancer which affects the brain.

When Dad was first diagnosed in February 2019, he spent six months in the RD&E hospital undergoing a brutal treatment regime, but eventually he went into remission and was well enough to return home. Then in November 2019 he suffered a fall, and a scan showed that he had relapsed. Dad eventually agreed that he needed to support from the Hospiscare Community Nurse team. Dad was very reluctant to accept this, thinking that if you look hospice care in the face, then you are accepting that your diagnosis and prognosis have shifted to a different place, and you are beginning the next stage of a journey you don’t actually want to make at all.

The Community team were amazing – such a wonderful mix of medical care but also compassion, which just shone through – it felt as though as a family, we were wrapped in an all-encompassing hug as we walked this path with him. As Dad got sicker, we found that sometimes we just didn’t know what to do, and as his daughter, just knowing that I could phone the nurses for advice at any time, whether it was medical, or emotional – someone was always there.

Dad was under the care of the Community team for over a year. Strangely, the end arrived quite suddenly. One Saturday night last August there was a change, so we called the nurse. She came out to see him very quickly, and reassured us that everything we were seeing was normal, but he had moved to a different place on his journey. It became apparent that although Dad did not want to go to the hospice as an inpatient, he was in a lot of pain and while we – my mum (who remained a close friend to Dad), my sisters and I – could give compassionate and emotional care, he needed to be somewhere he could receive pain relief straight away, as he needed it.

Together, with Dad’s consent, we made the decision that the best thing to do was to go into the ward at Searle House. As relatives, you constantly obsess as to whether you are doing the right thing, but Dad’s ability to communicate had dropped a lot at this point, so many times we were nodding and guessing at what he wanted or needed.

Dad was taken to the hospice by ambulance, and I was able to travel with him. He was taken from the ambulance into the most beautiful room, a family room, and just from that moment you walk in, although you know what is coming, there is a wave of compassion that hits you; everyone is working towards the best thing for my Dad, and for us. The care, and the time, the nurses took with all of us, I couldn’t believe it.

I had made the decision to stay with Dad. We were in a room that had an extra bed, and I still remember the green recliner chair and the beds with the beautiful crotchet blankets made by the volunteers and all those things made it so homely. There was a TV in the room so we would watch this together, knowing that if at any point he was in pain, I could press a button and people would come in and look after him, always with that gentle touch on the arm, taking time to explain what they were going to do. Just that care, was humbling, and as a family member, the most precious gift we could have had.

We had five days in the hospice and I was able to stay with Dad the whole time. The room looks out onto a beautiful garden and so we could have the doors open, allowing the breeze to come in. Another lovely thing was that we were told we could bring in family pets, so my sister brought in her dog, Scooby. We took Dad’s bed into the garden and sat in the sun, Scooby on his bed. Dad really came alive at that point. I’ll never forget it. And we had, that last day, of his life, the most beautiful family day we could have had, all five of us together, just like when we were kids.

Then it was just Dad and me. I could tell that he had moved into the final stages and he was asleep at this point. The nurses pulled the recliner alongside the bed so that I could be with him as closely as I could be, and I held his hand all night, my head next to his. I just held him, and remarkably, I think because of the calm and peace the ward had given us, I fell into a beautiful sleep with him and woke in the morning to hear the nurse telling me she was just going to make Dad comfortable and give him his medication and about 20 minutes later that morning he passed away.

The nurses at Hospiscare do everything they can to make sure that their patients are as comfortable and pain-free as possible. It meant so much to us as a family that they care so passionately about delivering the best possible nursing that they can, please help them look after other families as well.

 

With warm wishes
Ellie

 

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