Those final days, being able to be together all the time in a comfortable space made things a little easier for us as a family. When Alan was in the hospice, we weren’t his carers – the staff took care of him. We could just be together as mother and son, father and son, brother and sister one last time. Towards the end, he developed a chest infection and we were asked if we wanted to send him to hospital for further treatment. But why would we do that? He wasn’t going to get better. In the hospice, either we were with him or a member of staff was. He was lying in a bed, effectively trapped in his own body because he couldn’t use it, but his mind was still fully functioning. It’s heartbreaking for families going through the same thing. Having that space in the hospice where we could spend every minute of those final days together was vital. Whatever you needed, someone was always there. If you wanted a cup of tea or a snack to eat, they just couldn’t do enough for you. We were offered counselling to help us and although we tried a session not long after Alan died, it just wasn’t the right time. We weren’t ready yet. It was four years later when we did, and the Hospice were still there to support us over the phone during the COVID-19 lockdown.
We knew eventually Alan would have to come to the Hospice’s In- Patient Unit (IPU), and Helen, along with Dr Killin, suggested bringing him in for a couple of weeks of respite to help manage his pain. It also gave us all the chance to get to know the IPU, see what it was like, and understand what to expect further down the line. Helen also fought to get medication that would help manage Alan’s pain. Alan died three days after his sister Lynne’s birthday, but Helen had arranged a birthday card
Alan worked for his dad and brothers on the family farm and loved combining and digging.
That first autumn after he was diagnosed, when the combines started up again and he heard their unique sound, it broke his heart because he knew he wouldn’t be out there with them. He just couldn’t go back to the shed after that. It was during 2013 that Alan fell while playing football and was badly injured. Around the same time, he began struggling at work too. When he tried to use the drill, it would spin out of his hand, and he started getting pulses in his arm which we thought was a trapped nerve in his back after the fall. He went to a chiropractor he had seen before, who told him, “You need to see your GP.” Not long after that, Alan was hospitalised with appendicitis and received emergency surgery. He was then
referred to a neurologist a few months later because the muscle around his hands had deteriorated and he wasn’t recovering as quickly as anticipated. He had a scan, and afterwards our GP phoned and said we needed to come in. That was when they told us they were looking at Motor Neurone Disease. It was 27 March 2014 — a few weeks later, Mum retired to become his carer. Our first involvement with the Hospice was with Helen from the Community Nursing team. She was brilliant with Alan. They clicked immediately, and he felt comfortable speaking with her in a way he didn’t with others. She couldn’t have done any more for us.
When Alan was first diagnosed, we were told that because he didn’t live in the central belt, he didn’t qualify for a lot of support. Until the Hospice came along, he probably missed out on things that might have helped him. That’s why having a local hospice is so important. The Ayrshire Hospice were essential to us at that time. We couldn’t have asked for any more when we needed them most.
for her, signed with Alan’s fingerprint, which meant so much to her.
Alan also received complementary therapy and massage at home to help with his pain, and the family were offered support too. The Respite and Response team would visit Alan at home, giving us four hours one afternoon each week to go out and meet family, have lunch or afternoon tea, go shopping, or even get your hair done. You don’t think it’s much, but those four hours gave you a little bit of space to yourself. Knowing he was at home with someone who could help him gave us peace of mind and meant we weren’t constantly worrying when we were out. In January 2016, Alan returned to the Hospice’s IPU for ten days. We were in a nice room off to the side of Alan’s, with a small area and a sofa bed so we could get some sleep. In Alan’s final few days, we were given another room next door with sofa bed where Lynne and Scott could stay too. Those little touches meant so much to us.
September 2026 | EDITION 42
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