Alan's daughters Natalie and Claire’s were kind enough to share the story of how their Dad, who suffers from Multiple Systems Atrophy together with Parkinson's Disease, and the whole family have been supported by the hospice.
Alan, together with his wife and grandchildren
Alan first came to the hospice briefly in January 2019 and then went home for about a month but as his condition deteriorated he returned to the hospice in March before then being discharged to a nursing home where he is currently being cared for.
The sisters recall the care not only their Dad received but also that they, as parents themselves, received from all of the staff but particularly from the hospice’s Family Support Worker, Claire Mould to help their children through the experience.
Claire said: “I first met Claire Mould when Dad was admitted the first time and I brought in my 12 year old son Charlie, who is autistic, so he could see where Dad was staying and reassure him that Dad was OK. As we walked into his room the doctors were in with Dad and were asking him what he would want to happen if his heart was to stop and that’s not a conversation I’d had with Charlie yet. He knew that Dad was ill and that he wasn’t going to get better but that was as far as we had gone. On hearing what the doctors said his face just fell and I just scooped him up, took him out of the room and he just collapsed on the floor and I took him into one of the quiet rooms. He was really, really upset and then Claire came in and had a chat with Charlie, she explained to him how the hospice could help Dad and all of us and that he could speak to her whenever he wanted. She gave Charlie a memory box, teddy and Star Wars quilt which he was delighted with! We’ve had fairly regular contact with Claire since that point.”
Alan and grandson Charlie with Charlie's Star Wars quilt at the hospice
“Had that happened when we were at home I don’t know how I would have coped because he was so distraught so having that support around us was so life-saving.”
“When Dad came back into the hospice in March Charlie really started struggling with everything, he didn’t really understand what was happening. We had a few more chats with Claire and because Charlie had met her a few times he really started to open up about how scared he was about what was going to happen and that he didn’t want to lose his Grandad. Charlie is adamant he doesn’t want to open the memory box yet, but he sleeps with the bear every night and has the quilt with him which we’ve sprayed with scent, so it smells like Grandad, so it’s been a real comfort to Charlie. My Mum has spoken to Dad about completing the Life Book which he thinks is a great idea but it’s a very difficult conversation to have. I think it will be important for Charlie, who is younger than his two sisters, so he doesn’t have as many memories of his Grandad and his hobby of steam engines, so we’re trying to make sure we can make as many memories now as possible”.
Charlie has donated his Playstation to the hospice so it’s now in the patient lounge for anyone to play. Claire said, “I think doing that has helped Charlie because it makes him feel like he’s given something back to the people who are helping his Grandad which is great”.
Alan has always been involved with steam engines and steam rallies and it’s a hobby that the whole family got involved with so events like the Hollowell Steam Rally which Alan helped set up, has a very special place in the family’s hearts.
Alan, Abbi and Abbi's Dad doing what the family love, driving a vintage steam engine
Natalie said, “Wherever there’s been a rally, me, my husband and my daughter Abbi have always gone and Dad’s always been part of that but hasn’t been able to the past few years because he was struggling with walking and he’s a very proud man so he didn’t people seeing him like that. We’ve carried on going as a family because there are so many people who know Dad and we want to keep that connection but it’s not the same as he’s not able to come along any more. My daughter Abbi used to spend a lot of time with Dad out on the steam engines, so it’s also been very hard for her.
Abbi's quilt shared with Grandad at the hospice
Claire gave her a quilt too which is in a vintage style so fits in with what we do and she’s brought it along to the rallies with her and she’s found it a huge help as it’s like having him there with her.”
Claire, Bhav and other members of the hospice team have also supported the family with the assessments required to secure funding and ensuring Alan has the right support for his condition in the care home he’s now staying at. Unfortunately, Alan’s condition leaves him prone to infections which he has suffered from during his illness and the hospice team support continues with visits from Bhav to monitor his condition and make suggestions for his future care including the possibility of him returning to the hospice to stabilise his condition.
Abbi and Alan with Abbi's vintage quilt at the hospice
To show their continued support of the hospice both Claire and Natalie have joined our lottery and the Hollowell event, which Alan helped to set up, has supported the hospice over the years with various fundraising activities. Abbi's boyfriend, Ryan also dedicated his birthday this year to fundraising for the hospice by creating a facebook fundraiser.
Ryan's birthday fundraiser smashed its original target raising £370