“Until about a month ago, Robert had no symptoms at all,” says his wife, Catherine. “He was a fit, healthy 70 year old who still ran his own business.”
“The first sign we had that something was wrong was that Robert started looking quite jaundiced. His GP referred him to hospital for some CT scans, and the next day we were told that they had discovered shadows on his pancreas, liver, stomach and bones, that that it was very likely to be cancer.”
Robert was diagnosed with advanced pancreatic cancer, and he and Catherine were advised that he had a life expectancy of weeks, not months.
“The cancer was so far advanced that there was nothing they could do for him,” says Catherine. “He spent a week in hospital, but was then discharged and referred to Phyllis Tuckwell. Although he was very jaundiced, he was still completely mobile when he came home, but after just two days he suddenly found that he couldn’t get out of his armchair. He crawled out of the lounge and I had to stop him from trying to go upstairs. I called an ambulance, and when the crew arrived they suggested taking him back to hospital, but he didn’t want to go, so they helped him into bed instead.”
“Things began to move very quickly after that. The next morning, our GP rang to let us know that she had arranged for a hospital bed to be delivered. One of the nurses from Phyllis Tuckwell’s Hospice Care at Home (HCAH) team also called us, and advised Robert not to try to get out of bed. Later that day two HCAH Nurses visited, and helped Robert into the hospital bed, which had arrived that day. The District Nursing team also visited that afternoon. I couldn’t believe the speed of response and level of care that we received! Robert was determined not to go back into hospital – he wanted to be at home, and I wanted him to be wherever he was happiest. At home was fine with me. But with Robert bedbound, I wasn’t physically able to do it all on my own – I needed help. The HCAH team were fantastic. They submitted a fast-track application to the NHS for Robert to receive carer support. It came through very quickly, but in the few days that we were waiting the HCAH team visited us morning, afternoon and evening, to care for Robert.”
Our Hospice Care at Home (HCAH) team are part of our Care at Home service, and provide end of life care for patients who have chosen to spend their last days, and to die, in the comfort and familiarity of their own homes. They also offer emotional support to carers and relatives too, helping them through what is a very difficult time. Knowing that someone from the team is always there at the end of the phone is really reassuring for those who are looking after a loved one on their own.
“Because of the Covid pandemic, the HCAH Nurses and Health Care Assistants had to wear PPE, but it wasn’t a barrier,” says Catherine. “You can feel so much more isolated because of Covid, so knowing that they could still visit helped a lot. It was absolutely fine, the facemasks and hand sanitiser and all the PPE. It made things slightly more complicated and sterile, but it kept us all safe. The care was still the same. I was just sad that I couldn’t offer any of the team a cup of tea when they came to visit!”
Once the care package was in place, the HCAH team reduced the frequency of their visits, but still called Catherine every evening to check that everything was ok. “I also knew that I could call them at any time if I needed to speak to them about Robert’s condition or medication, or anything,” says Catherine. “From the moment we were referred, I felt so well supported by them. I couldn’t have done it without them – I just wouldn’t have been able to look after Robert in those first weeks before the care package started. It wasn’t just the physical support they gave, it was the mental and emotional support too. Because of them, I knew that I wasn’t on my own. When they visited, they would always check that I was looking after myself, as well as Robert. They cared for me as an individual person. Their focus was on Robert, but they took time to check I was ok as well. It really felt like they were part of the family. They knew all the cats’ names too! We have three rescue cats, Gary, Treacle and Squiggle, and the team all really loved them! Remembering the cats’ names doesn’t sound like a big thing, but it made a big difference. Little touches like that mean a lot.”
As well as supporting patients through their illness and at the end of their life, we also help their families to think about bereavement and the days which follow. “The HCAH team helped me to look ahead to Robert’s death, and think about how I would feel about him dying at home,” says Catherine. “They made me aware of preparations I would have to make, and gave me practical advice with regards to funeral directors and that sort of thing. With their help I was able to draw up a list of phone numbers of people I’d need to call after Robert had died, so I wouldn’t have to think about it then, I would already know what I needed to do. Having somebody that I could talk to about what was going to happen, and who would talk to me honestly about it, was so important. They weren’t blunt at all, it was a caring honesty. I knew that he was approaching the end of his life, and they helped me to understand what was coming and to be as prepared for it as I could be.”
Towards the end of his life, Robert was paralysed down his right-hand side and had lost most of his vision. Catherine would feed him and give him drinks, and the carers would visit several times a day. As well as being at the end of the phone, the HCAH team would also still visit Robert, to see how he was doing, and the District Nurse also still visited weekly. “We received so much support from Phyllis Tuckwell – more than we could possibly have expected,” says Catherine. “I don’t think I have ever been so appreciative of a service before in my life. Nothing has meant more to me. I’m so grateful for their support.”
“Since meeting the HCAH team and getting to know more about the care they provide, I’ve realised what a positive job it is. I think people associate Hospice Care and end of life care with negative outcome, but providing care for terminally ill people and ensuring that they are able to die with dignity, well I don’t think there’s anything better you can do for somebody. Having been on the receiving end of that care, I now realise how important it is for the patient and also for their families. We all concentrate on how we’re born, but we don’t think about how we’re going to die. If someone can die where they want to be, then to give them that is fantastic.”