When Nigel’s health deteriorated and his GP suggested that he be admitted to hospital, both Nigel and his wife Donna said “no”. Here Donna explains how a flexible approach from Rennie Grove’s nurses enabled Nigel to maintain control over his own care and to stay at home right until the end.
“Nigel and I met in Philadelphia in 1989. I’m American and he was British and when we knew we wanted to spend our lives together we decided to settle over here. We had 28 wonderful years together.
“Before I met Nigel he had been diagnosed with Sarcoidosis, a rare condition that affected his lungs. He really had no symptoms other than shortness of breath from time to time. For many people with Sarcoidosis, symptoms often improve without treatment within a few months or years. However, a few people find their symptoms develop gradually and get worse over time, to the point where they become severely affected and sadly Nigel was one of those rare people.
“Although his lungs were damaged he was able to lead a very normal life. And even when he had to start oxygen therapy 24/7 we adapted to a new way of life. It was simple but good.
“As Nigel’s health deteriorated we adjusted to that and carried on with our lives; we never felt sorry for ourselves we just kept enjoying the moment.
“It was important to both of us that Nigel controlled his health care and whatever he decided in terms of his medical condition, I supported him. We recognised that we’re all mortals with a finite time and our priority was to make the most of the time we had.
“In 2017 Nigel’s lung disease led to heart failure and his GP – who has been absolutely incredible – became concerned. He suggested that Nigel be admitted to hospital and was met with a resounding “no” from us both.
“We felt that there must be a solution that enabled Nigel to stay at home and that solution came in the form of Rennie Grove Hospice Care.
“A Rennie Grove nurse came to visit and she explained about the charity and how its nurses could support us both. We agreed that we didn’t need a weekly visit initially and the nurse listened to us, made some suggestions and gave us reassurance; she left us with a patient pack full of helpful information. We were both absolutely determined to maintain normality.
“Nigel and I took ownership of his medical condition and very much led the way in terms of preparing for all his appointments, undertaking research and making a list of points and questions he wanted to ask during the consultation.
“Rennie Grove nurses were very happy to accommodate this and I felt that they, as well as our GP and the district nurses, filled in the gaps in terms of caring for Nigel, allowing me to do as much as I possibly could.
“Nigel and I knew his death was inevitable and we had plenty of time to prepare for it but we didn’t focus on that, choosing instead to live for the moment and we had a great quality of life in our lovely home, which was our sanctuary.
“Slowly Nigel’s health declined and we needed to take up the offer of weekly visits from the nurses.
“There was no question that Nigel had to stay at home right up until the end and we all worked very hard to make sure that happened.
“I was so impressed with the great communication between Rennie Grove, adult care services, our GP and the NHS who all worked together to make sure that our wishes were met.
“I could not have done what I did without the Rennie Grove nurses who I describe as having caring hands and warm hearts. They offered us the flexible service that we needed and I was confident that we were receiving a top quality hospice at home service.
“They were not at all intrusive and I felt privileged to have them visit and care for Nigel. He was a very independent person and yet he allowed the nurses and healthcare assistants to assist with his personal care when necessary and they treated him with absolute dignity and respect which was critical to us both.
“Having Rennie Grove Hospice at Home nurses care for Nigel allowed us to maintain the sense of normality that we had strived for throughout Nigel’s illness and being able to die at home was of paramount importance. It happened just as we wanted it to happen. We were alone together holding each other and holding strong for each other. We could not have achieved that without them and we are so grateful for their care.”