Emily’s grandad, Ron, lived in Willen and had always supported the Hospice. Under the care of our Willen at Home team, Ron had the death he wanted – with family, at home.
Meanwhile, Emily and her eldest son, Luca, also received support from Willen at Home, which went beyond what she could ever have imagined and shaped Luca’s feelings about death and loss as he grew up.
A close relationship
My granddad, Ron, was 92 when he died. After my grandma passed away six years earlier, he went to live with my mum, so we had a very close relationship and I would see him all the time. He was part of taking care of my children, right through from them being babies.
He became ill about 18 months before he died. He had cancer of the oesophagus. Radiotherapy staved it off a little bit, but because of his age, there was only so much that could be done.
“The Willen at Home team are somehow everything they need to be without you having to tell them what they need to be.”
Care at home
The Hospice had always been close to my grandad’s heart. It went without saying that he’d be cared for by Willen. It was quite a seamless transition for him, from the point at which we were told that he needed end-of-life care, to Willen just swooping in. He made it very clear that he wanted to remain at home. And we were able to do that for him. I always say he was given the death he wanted, thanks to Willen.
The Willen at Home team are somehow everything they need to be without you having to tell them what they need to be. They sorted everything out. I know how many people they have to support, but they have this absolutely incredible ability to make you feel like you’re the only people they’re looking after.
It’s so much more than medical care that they provide. Having them guiding and supporting us through that really scary, emotional period of our lives – I just wish everybody was able to access it.
Support for the whole family
One of the things I remember most is the support the nurses gave my mum. She was doing the majority of the caring for my grandad. But you could see it taking a toll on her and the nurses could see that too. The advice my mum was given is that there’s no shame in having help to care for somebody. Because what it allows you to do is spend more quality time with the person, connecting with them.
“The nurses supported us in how to tell Luca that Grandad was going to die.”
Help with talking to children
Me, my husband and our two sons were well supported too. Luca, who was six, could see my grandad becoming more ill and not being able to play football with him anymore. But navigating the concept of death with Luca was hard. The nurses supported us in how to tell him that Grandad was going to die. The best thing I was taught is that you give the child an age-appropriate truth. So you don’t say, ‘Don’t worry, he’s not going to die’ or things that aren’t true.
Luca had a very inquisitive mind. When a nurse came to put a syringe driver in Grandad’s leg, Luca was asking questions. The nurse said, ‘Do you want to come and watch?’ So he knelt down by the bed with his face at my grandad’s thigh while this syringe driver was going in! He wasn’t scared because the nurse explained what was happening. Consequently, as a teenager, he’s not scared of needles, he’s not scared of being open and honest with children, and he has a much better understanding of and a relationship with death. It wasn’t the nurses’ jobs to teach my children those things and to teach me how to speak to my children about those things. But they did it.
“The experience of Willen at Home has made me a better parent, because I think a lot more about the information I give my children.”
Supporting other children with loss
The experience of Willen at Home has made me a better parent, because I think a lot more about the information I give my children and the way I deliver it. Aged six, Luca was able to stand up at my grandad’s funeral and speak on his own. I’m sure this was a consequence of his relationship with my grandad, the support he received from the Willen at Home nurses and the follow-up counselling sessions that he had at the Hospice. He had such a peace with what had happened. As well as the confidence to feel that it’s OK to be happy about the memories you have and not just be sad when someone dies.
One of Luca’s teachers asked him to be a buddy to another little boy who had lost his grandad. So he went through school earmarked as somebody who could be a peer supporter for other children who had suffered loss. I’m so proud of him for that.
“The dignity that Grandad had in his death was something that everybody deserves.”
The death he would have wanted
Grandad was surrounded by so much love. We were with him 24/7 and it wasn’t just me, it was my mum, my husband, my children. The night before he died, we were all lying in the room with him, cuddled in blankets. We wouldn’t have been able to do that if he’d been in hospital. He could have passed without us even being there. But we didn’t have that worry.
To have a peaceful passing at home, surrounded by your family, with ‘Homes under the Hammer’ playing on the tv in the background – it doesn’t compare. The dignity that he had in his death was something that he deserved and that everybody deserves.
Willen at Home cared for my grandad and gave him what he needed in terms of pain relief and support. But the support they gave to us and the time they gave us to be able to spend quality time with him in his last days… There’s no amount of thanks or money that can quantify how important that was to us.
“If the Hospice isn’t supported, in future it might not have the resources to give other families the care and support that our family had.”
Lucky to have the Hospice
When I found out that Willen at Home receives no NHS funding whatsoever, I just couldn’t believe it, because I think everybody should have access to it. Everybody should have a choice over where they die.
I don’t think people realise how lucky they are to have the Hospice here. It’s really easy to not engage with something when it hasn’t touched your life. But if something isn’t done about the funding and if the Hospice isn’t supported by absolutely everybody, in future it might not have the resources to give other families the care and support that our family had.
