We cared for Paula’s son Gordon when he was diagnosed with motor neurone disease. She tells us about the care he received and why she has chosen to leave a gift in her Will to Martlets.
“Being able to leave something in my Will to the hospice makes me feel very proud. I care about my community and would like my gift to be used to make someone’s life easier, just as they helped my son and us as a family.
Incredible care
Sadly, my son Gordon was diagnosed with motor neurone disease (MND) in 2018 and he died in 2020. Thankfully, Gordon was referred to Martlets within days of being diagnosed and the service they provided was just immense.
Everyone involved in his care at Martlets was such a comfort. They organised occupational physiotherapy for Gordon at home to help with his mobility; they got a special adjustable bed, chairs, frames, all the equipment he needed.
At one point, we decided he would come and live with me a few weeks. The Martlets team visited to assess how to make it a safe space. It was an amazing level of care. I was able to care for him here for eight weeks.
Later he was rushed into hospital, which was very scary. They transferred him to Martlets’ inpatient unit from there.
The medical care was just incredible, and there was holistic support that looked after every aspect of Gordon’s health and our family’s wellbeing too. From the doctors, nurses and healthcare assistants at Martlets to the housekeeping staff and canteen workers, we felt warmly enfolded in their arms.
The spiritual care was such a support. Gordon was a Buddhist and I was able to take him on trips to his monastery, though it became quite a task later on when his health deteriorated and he required a walking frame and breathing and feeding equipment. But Martlets were there to offer support to make that possible.
The Martlets chaplain also used to spend an hour with him every morning. Those conversations helped Gordon understand that he still had the freedom to make choices about his care and what would happen. There were choices that he could make and that we could be involved in as a family, and that was so important.
Saying goodbye
During his last week, Martlets arranged for someone who understood MND to stay with Gordon at home overnight. He told me though that he wanted to go back into the hospice to be cared for at the end. That’s how comfortable he felt about being there.
There was peace and serenity all around from the minute Gordon went in until the time he died. Unfortunately, I wasn’t present when Gordon died, but when I went in the nurses let me sit with him and hold him for as long as I needed to. I held him like a baby; he was still my baby.
The staff were so sensitive and caring. They always answered my questions honestly and listened at length even when they were busy. And they didn’t just care for my son, they cared for me, my daughter, and his wife and children too. His daughter had bereavement counselling from Martlets which was a great support.
The Martlets community
Rather than have bereavement counselling, I needed to feel grounded by getting involved in the Martlets community; continuing as a volunteer has been such a comfort.
I go to the bereavement evenings, I sing in the Martlets choir, and I’m a Compassionate Neighbour. They’ve also trained me to use the computer in the warehouse. So, I’m doing some data inputting for them, which I’m enjoying because I’m with people again. It’s like being part of a big Martlets family.
You’re not just a patient, you’re a person. For anyone who thinks a hospice is somewhere you go to die, please know it is so much more than that. Yes, death and dying are an inevitable part of terminal illness, but Martlets is all about making the most of life and the time you have.
As a community, we’re lucky to have Martlets; it’s there for us – the people of Brighton and Hove and the surrounding areas. The hospice provides care that you just wouldn’t find anywhere else. They look after the families as well as the patients and that’s such very important work that must continue.
That’s why I’ve left a gift to Martlets in my Will.”
Get a guide to leaving a gift in your Will
Leaving a gift in your Will
Could you live hospice care live on for all, for now, forever? By leaving Martlets a gift in your Will, you can help ensure that local people continue to receive vital hospice care for many years to come.
Paula's story was previously published in 2019, and re published 17/2/2025