Jim’s wife, Stephanie, was diagnosed with Non-Hodgkin's Lymphoma in 2016, and was cared for by the haematology team at Frimley Park Hospital.
“In May 2023, the specialist called us in and told us that there was nothing more they could do for Stephanie, and that they were going to refer her to Phyllis Tuckwell,” said Jim. “He said that as he’d known us a long time, he already knew what the answer would be, but did Stephanie want to stay at home or go into In-Patient Unit? We said she wanted to stay at home to the end of her life if she could, and he said, ok, and that Phyllis Tuckwell would be in touch.”
Stephanie and Jim were contacted by our Hospice at Home team, who care for patients who want to spend their last days at home, instead of in hospital or on our In-Patient Unit. The team provides all the medical, nursing, therapeutic, practical and emotional support that patients need, and supports patients’ carers too, providing advice and reassurance, and enabling them to focus on spending quality time with their loved ones.
“Phyllis Tuckwell contacted us and asked what we wanted, and we said we wanted to stay at home. They came out and saw us, and asked if we were coping, and we were at the time. My daughter Ann lives in Wrecclesham, just down the road, and she came over a lot. I’ve got my son, Richard, too, who lives in London, and four grandchildren and two great granddaughters. We’re a very close-knit family and we were coping very well. But towards the end, things got a lot harder, and by August time that year I couldn't cope with everything that was going on. Someone from Phyllis Tuckwell’s Hospice at Home team came and saw us, and told us what they were able to do for Stephanie.”
Caring for loved ones around the clock can be exhausting. Our Hospice at Home team supports both our patients and their carers, providing nursing and personal care, and enabling patients to remain at home, where they and their families want them to be.
“When we met the people from Phyllis Tuckwell, it was obvious that we were going to be well looked after, because they were amazing people. They were kind, good humoured, and they’d give out advice about what I might need. Julie, one of their patient & family advisors, helped us with our application for attendance allowance and a blue badge, and their occupational therapists sorted out all the equipment that Stephanie needed, such as walking frames and commodes. Because of Stephanie's illness, her legs swelled, and Angie, one of Phyllis Tuckwell’s complementary therapists, would come round and massage her legs and feet for her, which she found very soothing. I was offered massages too, but I said no. I could have done if I wanted to; I knew it was there.”
As well as providing nursing care, our Hospice at Home team includes a wide range of other specialists, such as patient & family advisors, occupational therapists and complementary therapists. They can help with practical and emotional matters, assessing and arranging for equipment to be delivered, telling patients and carers about which benefits they can apply for, and easing symptoms with relaxing treatments such as massages.
“We had a stair lift fitted so Stephanie could get upstairs to bed, and to start with she could use that, but that changed over time and eventually she was confined to the downstairs. She was sleeping in an armchair and I was sleeping on the settee to be with her. The Phyllis Tuckwell occupational therapist arranged for her to have a hospital bed delivered, for her to sleep in downstairs. It made a big difference; she was able to sleep a bit better. I was still on the settee and not getting much sleep, then one day the Phyllis Tuckwell nurse asked if I would like them to send someone out to sit with Stephanie at night, so I could go to bed and have a good night’s sleep. It was amazing. During the afternoon I would get a call from them saying that they had spare person that night, and then she would arrive about 10pm, and say ‘right, off you go up to bed, I’ll look after Stephanie now’, and she would stay until 6am. We had never known anything like it, for the service that they provided. Considering they rely on charity, it's incredible what they do.”
When we have staff availability, our Hospice at Home team can sometimes offer a night sitting service, where one of our health care assistants will come to a patient’s home and sit with them through the night. Knowing that their loved one is being watched over gives carers peace of mind and enables them to relax and get some sleep themselves.
“Stephanie died peacefully at home on 15th September, and all her family were here with her. It was extremely important to us that she was able to stay at home. She had always said, even before she was ill, that she wanted to die at home if possible, and Phyllis Tuckwell made it possible for her to stay with the family at home right to the end. For the whole time, the care given to Stephanie was amazing, and I and my family will be forever grateful.”
