Ruth’s husband, Michael, was cared for by our Hospice at Home team, before being admitted to our In-Patient Unit (IPU), where he spent his last days.
“We were referred to Phyllis Tuckwell by our GP, in about May 2020,” said Ruth. “Michael had been ill for over three years, with quite a lot of problems. He had rheumatoid arthritis, heart disease, prostate cancer, and a few areas of skin cancer. He was really unwell. He got pneumonia and from then on, every few months he was ill again with something; it was the slightest things that would tip him over the edge. I think he spent each Christmas after that in hospital.”
Michael was visited by Julia, one of our clinical nurse specialists (CNSs), who helped him with pain relief. Our CNSs are often the first of our team to visit patients. They assess patients’ needs, as well as the needs of their family and carers, and can prescribe some medications, find out patients’ wishes with regards to their care, and refer them on to other teams within Phyllis Tuckwell.
“Michael was in hospital again in the summer, and when he was back home Dr Jo came out to see him. Then from the end of August until the end of November, he was at home, in a hospital bed in the dining room.”
Dr Jo is part of our Hospice at Home team, which visits patients to provide care for them in their own homes. As well as doctors, the team also includes nurses, health care assistants, physiotherapists, occupational therapists, complementary therapists, counsellors, and patient and family advisors.
"We had carers coming out to the house, and we also had out of hours nurses from Phyllis Tuckwell once or twice, and one of their doctors too. It was nice to have that support.”
"We had the district nurses as well, and our GP was very good, he came out to the house, we didn't have to go to the surgery. They were all really helpful. One of Phyllis Tuckwell’s occupational therapists, Tori, came out to assess Michael’s general mobility, to see whether he could get upstairs or not, that sort of thing. It was obvious he couldn't, so the best idea was to organise for us to have a hospital bed at home.”
As Michael’s condition worsened, he was admitted to our In-Patient Unit for a few days, so that our team could assess and treat his symptoms more easily.
“I was quite relieved in a way, because I got to the point where I felt I couldn't physically look after him as well as he needed to be looked after. He was sleeping in the front room downstairs, on the hospital bed, so I had a blow-up bed in the lounge, because I couldn't hear him when I was upstairs. To begin with, he would call me on the phone, because we had a phone where you could talk on one handset to the other. But then he forgot how to use it, he couldn't remember which buttons to press. I just felt that, although he wanted to stay at home, he wasn't getting enough expert care, and I didn't have anybody else with me, because my daughters don’t live nearby, and it was during the pandemic as well, so it was difficult for them to come and see him. At the Hospice, I knew he'd be looked after; that he would have somebody with an eye on him all the time.”
Michael was admitted to our IPU at the end of November 2020.
"He was going to go in for a week so they could assess what he needed, and then he was going to come home again or possibly go into a nursing home, depending on what they said. He was in there for a week, but by the end of the week he had deteriorated so much that he wasn't well enough to move. In the end, he stayed there until Christmas Eve, when he died.”
“It was lovely on the IPU. All the nurses were really kind and very supportive. I'd ring up first thing in the morning to find out how he'd been all night, and they would say whether he'd been awake or had managed to sleep. I would then go in just after lunchtime and stay until about seven. It was all-encompassing, really. Every day was the same. I'd have the morning to do whatever I needed to, and then the afternoons and early evenings with him. I’d leave as he was being prepared for the night.”
While Michael was on our IPU, he and Ruth were both offered massages from our complementary therapists. These gentle, non-invasive treatments can help to ease pain, anxiety and tension, improve sleep and promote wellbeing.
“I think Michael mostly had hand massages, and I had a couple of back massages. Once all the patients had had a treatment, the complementary therapists would then ask the family members if they wanted anything, which was nice. Our elder daughter, Melissa, was staying with us when Michael was admitted, so was able to come to the IPU and spend the day with him while he settled in. Our younger daughter, Georgia, was planning to come down for Christmas with her children, but all plans were cancelled due to the pandemic. Fortunately, she managed to visit him on her own the following week. That was the only time they were able to visit him on the IPU before he died.”
We try to make Christmas on the IPU special for those we are caring for by organising festive activities, such as our small choir of staff who sing carols outside patients’ rooms. Because of the pandemic, they went outside and sang at patients’ windows.
“The carols were lovely. They were asking for requests, and I asked them for something, but Michael wasn’t well enough to.”
On the morning of Christmas Eve, Michael’s condition worsened.
"They rang me very early in the morning and said ‘can you come in now?’ I don't think I even realised then that it was imminent, because it’s just not a question you ask, but I went in straight away and I was there all day. It was actually a very peaceful day. There were two young nurses who were very kind and gentle, and they very carefully washed him, shaved him, changed his shirt and made him comfortable in bed. They talked to him all the time they were doing it. It was very comforting, watching them. Later on, we listened to Carols from King's College, which I always listen to on Christmas Eve when I'm preparing the food for Christmas Day. I sang along with a few of the carols, and at some point I had a shower. I was drying my hair with hair dryer and thinking to myself that this is a normal noise to him, it's noises that you get at home, almost like being at home really. He stopped breathing about 5pm. I was sitting with him, and I suddenly realised he wasn't breathing anymore. I didn't particularly notice him taking a last breath, but his breathing was very shallow by then. It was very peaceful and tranquil. He was ready to go. Somebody came in to sit with me for a bit, but I didn't stay too long because it felt as if he wasn't there anymore.”
“Everybody at Phyllis Tuckwell is focused on making patients feel comfortable and loved. It was as if he was being enveloped in kindness and, whatever his needs, they could deal with it. If he was in pain, it was dealt with straight away. He was treated with dignity. I knew that, whatever time of day or night it was, there was somebody there to call on. If I could have done, I would have kept him at home, but it just didn't make sense; I couldn't physically do it. The IPU was the next best thing to being at home, and in many ways it was probably better than being at home."
“I started volunteering at the Cranleigh shop about eight months after Michael died. I just wanted to give something back. It's a distraction; it means that one afternoon a week I can think about other things. I mostly do Monday afternoons and sometimes an extra morning or afternoon if they're short. Sometimes I'm on the till and sometimes I’m out the back sorting stuff; it depends on what they need at the time. Some of the things we get in are brand new. We have clothes in with the labels still on them, and we sell them at a really good price. Phyllis Tuckwell has to raise so much money every day, and people might only spend a couple of pounds at the shop, but it all makes a difference.”
Every day we need to raise over £25,000 to provide our services free of charge to our patients and their families. Please make a donation today to support the important work of Phyllis Tuckwell.
