Joyce, mum to Julie and Sue, and mother-in-law to Catherine, was cared for by our Hospice at Home team, who visit patients in their own homes, throughout their illness. Joyce wanted to spend her last days at home, and her family wanted to honour her wishes. Our Hospice at Home nursing team gave them the support and reassurance they needed to do this, and Joyce was able to die in the place she wanted to be.
“Mum’s doctor told me he was referring her to Phyllis Tuckwell, and the team made a home visit to see her,” said Julie. “Shortly afterwards, I got a phone call from them giving me their contact details and saying to give them a call if we needed them. They liaised with the district nurses, who were also visiting Mum, and as Mum became more poorly, they became more involved.”
Our Hospice at Home team includes doctors, nurses, health care assistants, therapists, counsellors and our Pastoral Care team. Together, they provide all the support needed for patients to be able to spend their last days at home, where they want to be. The team works closely with other local healthcare providers, including GPs, hospitals and district nurses, ensuring that the care provided is joined up and seamless. Our Hospice at Home nurses liaised with the district nurses who were caring for Joyce, coordinating their visits so that she received the care that she needed, at the time she needed it.
"Mum was terrified of dying, and she didn’t want to die alone,” continued Julie. “Staying at home was non-negotiable, and because she was at home, one of us was able to be with her all the time. Phyllis Tuckwell put so much in place to enable her to have her last wish. They bought in a hospital bed that wouldn't give her bedsores, and a commode as well. In the end, they decided that Mum was too poorly to move onto the bed, so I slept on it, right next to her. It meant there was always somebody there holding her hand, reassuring her and keeping her calm. We couldn't have done that without Phyllis Tuckwell.”
“They de-stressed the whole situation,” said Sue. “They really understood Mum; they knew that she was scared, and that we were stressed and concerned for her. They told us what to expect at each stage and explained things without being patronising. Having that knowledge really helped us. They took the burden off us and put us at ease, so we were then able to be relaxed around Mum and make sure she didn’t get stressed. I think she sort of accepted things. It wasn't mentioned as such, but she knew what was going to happen. We’re a big family of five children, and we all stepped up. We had a shift rota, showing who was there and when, but if one of us was there on our own, we knew Phyllis Tuckwell was there as well, if not in person, then on the phone. So, if something changed in mum's mannerisms, her pain level, her breathing, her fear, we could always pick the phone up and somebody would talk us through it - and then we could be calm with Mum. It meant she didn't see us stressed; if she did, then she'd panic. The fact that that the stress was taken away from us, made it easier to for us to care for Mum and not pass that anxiety on to her.”
“For me, it was the immense amount of patience they had,” said Julie. "The number of times I picked up that phone and said she's still in pain or why is she so restless, and should I be doing something? And every single time there was somebody there reassuring me.”
Our Hospice at Home team can 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 their carers peace of mind and enables them to relax and get some sleep themselves.
"We were trying to work, we were trying to care for Mum, and we were trying to look after our own families,” said Sue. “She was adamant that she was going to stay at home, and we promised her that she would, so we needed to care for her 24/7. Getting a call in the afternoon to say there's somebody who can sit with her tonight, oh my word, that was such a feeling of relief. We would just think, phew, I've got a little bit of time now just to breathe. That's the one feeling I had when that phone call came. Having something else in place that allows you to take some time out, so that when you do go back, you're refreshed and ready to cope again. Even though we stayed as well, it was knowing that there was somebody with Mum, that we could catch some sleep knowing that they would wake us if we were needed. The night carer would come in and have a chat with Mum, even though Mum wasn't really with it by that stage. And then she'd come out and say she's going to be all right tonight. And so, without actually saying she wasn't going to die that night, she inferred that it wasn't about to happen, that we could go home, have a shower, see our families.”
“I felt like I was doing two jobs,” said Julie. “Because I lived so close to Mum, I would pop in after work and do a lot of the sleepovers. So the night sitters gave me that release, to know I could hand this over now and have a bit of me time, and know that she's not on her own, that nothing bad’s going to happen right now, and that it’s OK to be me for a little while. And every time we called Phyllis Tuckwell, it was no problem. They made us feel like we were valuable, we weren't being a nuisance, and we weren’t alone.”
As Joyce became more ill, the Hospice at Home team would call the family daily to see how things were.
“It's having somebody asking not out of duty, but out of care,” said Julie. “That's something I didn't really realise about Phyllis Tuckwell. I thought they were just there to care for the dying, but they do so much more than that. Mum was bedridden by this point, and in and out of consciousness, but she'd wake up and say something like, oh, well, now, I really fancy a whiskey and ginger and one of the nurses who was with her would say you can have whatever you want, if that's what you fancy, that's what you have. And she didn't because then she would drift back off to sleep, obviously. But it was that they didn’t say no, you can't do this, you can't do that. It was you do what you want, it's in your control, even to Mum, it's in your control.” “A few days before Mum died, I was there with her,” said Sue. "I’d told Julie to go home for a bit and said I'd call her if there was any change. When she came back, a bit later, I said that Mum’s breathing had changed.
"Charlene, one of the health care assistants, came out,” said Julie. "She eased me into it. She said that Mum wasn’t swallowing anymore and wasn’t really with it, but that she could probably still hear us. She said that we were getting towards the end stage, but not yet, not now. So I was prepared then, when it did come.”
"The Phyllis Tuckwell team talked us through each stage, explaining things so that we understood,” said Sue, “and so that when things did change with Mum, we sort of expected it before it actually happened, which eased us into it. We knew it was imminent and we were sort of semi-prepared for it; it was understanding the stages and knowing what to expect.”
"One other thing that was beautiful for Mum was about two days before she died,” said Julie. “Two nurses came and gave her a bed bath. They changed her nightie and brushed her hair, and they spoke to her the whole time. Mum wasn't really with it, but they gave her that dignity. They were chatting to her as if she understood, saying let’s comb your hair, or what lipstick do you like? They treated her with dignity. When I walked in, I just remember saying, oh Mum, you look beautiful!”
"The next evening, we were both sitting on the side of the bed, chatting to Mum,” said Sue. “In the afternoon, I'd been playing her some of her favourite music. My daughter sings, and I was playing Mum some videos of her, and she was really, really calm. The idea was that when Julie arrived, I'd go back home for a bit, but when she got there I just said I think I need to stay. So we were sitting on the bed, talking quietly, and Mum's hand suddenly went really cold. We both looked at her, because we knew, and then she took her last breath. It was very peaceful, very calm. I’m really glad she got her wish to die at home.”
