Sue had been nursing her mum Beatrice for five years when things finally got too much for her and she needed some help.
“Mum had got progressively worse in quite a short space of time,” says Sue. “She had breast cancer that there was no cure for, she was too poorly to have anything done. She also had dementia, osteoporosis in her spine and was double incontinent, so there was a lot going on. She couldn’t walk anywhere on her own. She had got to the point that I was almost having to carry her to the bathroom to clean her, and to the bedroom, and that was part of the reason it got too much. Once she had become bed-bound it was very difficult for me to care for her on my own. She was very fragile. I couldn’t nurse her in the way she needed to be nursed. I’d looked after her for five and a half years; I felt that I should have managed. But there comes a point when you just can’t do it on your own anymore. And one day I reached my limit.”
Sue phoned her mum’s doctor, who came out to see her. “She said it was time for us to get some help,” says Sue. “Within a day the Phyllis Tuckwell nurses turned up, and from then on they were my angels, and my mum’s angels.”
Beatrice was cared for by Phyllis Tuckwell’s Hospice Care at Home (HCAH) nurses, who visit patients who have chosen to remain at home in the last weeks of their life. They provide compassionate nursing care for patients and offer emotional support to their relatives, too.
“Mum always wanted to stay at home,” says Sue. “She never wanted to go into a home or a hospital. She would hold my hand and say ‘I don’t want to go anywhere’. Even though she had dementia, she knew she was very poorly and she knew she was in her own home, she knew where she was. She’d say to me ‘Sue, don’t let me go.’ So I promised her that I would look after her at home. But when the nurses started visiting, I was worried that I might not be able to keep that promise, they might not allow me to keep her at home. I needn’t have worried though – it was fine. The nurses wanted Mum to stay where she was happiest and they did everything they could to make sure she could stay there. So I was able to keep my promise – but I only kept that promise because of Phyllis Tuckwell’s nurses. Without them I don’t know what would have happened. I owe them a lot. Because of them, I could say ‘Mum, it’s ok, you’re not going anywhere because the nurses are coming here’.
“They visited twice a day,” continues Sue, “because Mum needed that level of care. When they first arrived I was very defensive, because I wanted to care for Mum myself, but they couldn’t have done enough to reassure me. It was like they knew what I was going through. My mum was in bed in the other room, she was perfectly safe, and one of the nurses spent most of her time with me. She must have been there a good few hours, talking to me and telling me what to expect and not to feel pushed out, because I didn’t want to feel pushed out, I wanted to still be part of my mum’s care.”
“When they came, there was no rush, there was no time limit. They used to turn up and I would go and sit in my mum’s chair in the lounge and read, while they nursed my mum. They used to love coming to see her; even in her condition she could still make them laugh. There was a particular nurse called Pat and she always had cold hands, and my mum would say to her ‘You’ve got cold hands!’, and Pat would call out to me ‘Sue, I’m getting told off again!’ There was always that joviality. When the door went in the morning, we used to say ‘our angels are here’, and I do feel strongly that’s what they were. I still class them as my angels. I knew the care that they were going to give to my mum was going to be second to none. They loved her, they cuddled her, they treated her like one of their own, and they also did the same to me. They were never short of a hug. Anything I needed, I could ask them for. They took all my concerns away.”
“Before they started coming I’d had a lot of anxiety. I used to get a heavy feeling in my chest every time I came to nurse my mum, because I wanted her to get better but I knew I couldn’t get her better. It was stress, I know it was. It was the stress of caring for her, trying to keep her in her own home, and constantly thinking about how I was going to get through the next day. But one morning, two or three days after the nurses had started visiting, I drove to Mum’s house and for the first time in a long time I didn’t have that heavy feeling in my chest. And I knew it was because I’d made the right decision and the right people were looking after her. I couldn’t have wished for anything better. And although they were there to nurse my mum, they were there for me as well. When they arrived each day, the first thing they did was ask if I was alright and how the night had been. They knew my mum was safe, but they worried about me. I never once felt that they were in a hurry, never once felt that I was a burden to them. Anything I needed, any time I needed to talk to them, I could have it. I remember them saying that they were going to give me back the quality of time with my mum that I needed, that I hadn’t had for a long time, because the time I had spent with her I had just been nursing her, constantly, up to eight hours a day. And I did get that time back. It had been so full on, and they took all of that pressure away – so I could feed my mum without any worries, I could sit and talk to her, I could do her tidying and dusting, and then I could sit and have a cup of tea with her, whereas before I couldn’t because I was always caring for her, trying to get her changed and into the bathroom, or back into bed, and always worrying about keeping her safe. I always thought I could cope on my own, but as soon as the nurses started visiting, I realised I couldn’t do it without this extra help.”
As the nurses had said, Sue was still involved in Beatrice’s care. “In the mornings, I would give Mum her medication before the nurses arrived,” explains Sue. “That way she’d had it in plenty of time and wasn’t in any pain when they arrived, which meant that they could see to her straight away. We worked together. It made me feel that I was still helping her; it made me feel important. Even though I couldn’t do the hands-on nursing anymore, I was still part of it. The nurses wanted that, they wanted me to feel as though I was part of it.”
“Mum loved being at home. We had got her a hospital bed and she was so comfortable. I knew she felt safe there, because she slept so well. She had a big family and loved having photographs of them all around her. One day I realised that, because she was bedbound, she wasn’t going in her lounge or dining room anymore, and that was where her memories were. So I brought all of her photos into her bedroom and put them up there. The nurses were laughing, because I was putting holes everywhere! I filled the whole wall in her bedroom with her photos. The nurses loved looking at them too, which was really important to me because I felt like they were part of my family, and I still feel that.”
As well as visiting her twice a day, the HCAH nurses referred Beatrice to Phyllis Tuckwell’s Patient & Family Support team, who arranged for two carers to visit her around midday each day, to help. “I didn’t need to do anything,” says Sue. “The next thing I knew, they were there!”
As Beatrice became more poorly, towards her final days, our nurses suggested to Sue that a night nurse sit with Beatrice during the night a couple of times, to respond to any care needs which she may have and enable Sue to have a break, knowing that her mum was being watched over and looked after. This service is sometimes offered when a patient is very ill, usually in the last few days of life.
“On the morning that Mum died, the nurses came as usual,” says Sue. “I remember hearing them laughing with her. I used to hear that a lot. I would be sitting in the lounge reading a book, and I would hear them laughing with her. That was so good for me to hear; I have lots of happy memories of that. I was always buying my mum new nighties, but we would have to cut them up the back to get them on her. Brand new nighties cut up the back. The morning she died, they put a new nightie on her and I could hear them talking to her, saying ‘Look Beat, your daughter’s bought you another new nightie!’ That morning they nursed her and cleaned her, and then they went. Within two hours of them going, she had died. So I phoned the team and they took charge of everything. They sent the nurses back to be with me, and they stayed with me for quite a long time. They sorted Mum out for me, and I felt like I was the only one that was important to them at the time. That was a huge comfort to me. There was no rushing, there was no ‘we’ve got to move on to another patient’. They made sure that I was ok before they even considered leaving.”
“I don’t know where to begin to thank Phyllis Tuckwell. The biggest message I have is to not be frightened about Hospice Care. Nobody’s going to take anything away from you, nobody’s going to say they’re in charge – they’re just going to help you through a very difficult situation and be there for you. When the doctor first came out to see us, I thought that my mum only had a couple of weeks left, but she went on for another eight weeks. I put that down to the care those nurses gave her, that I got those extra weeks with her that I maybe wouldn’t have had otherwise. People have to realise what a good job they do. It’s special, they are such special people. Three of them came to my mum’s funeral and I feel very lucky that they found the time to do that. As much as they were there for my mum, to nurse her, they were also there for me. They knew what the outcome was going to be, because that’s why they were there. They were there to make my mum’s life better for the short period of time she had left, I know that. But they made sure that they focussed on me too, and they still focus on me a year down the line. I still come to the Hospice. I’ve been to a few services here and I’ve cried and cried and cried, but I’ve always had a comforting hand find my hand. They’re there for you, they know what you’re going through. I get my strength now by coming and saying hello to the nurses. It’s comforting, knowing that they still remember me and still think of my mum.”