This year Martlets is redeveloping their Hospice site. It’s a really ambitious project – one that will mean even more families in our local community can be supported with compassionate, dignified end-of-life care, whether that is in the Hospice or at home.
Martlets Moving Story aims to raise vital funds for the new Hospice and Paula, whose son Gordon was cared for by Martlets, tells us about the amazing care he received and why she is passionate about supporting the appeal. If you would like to support Martlets Moving Story, you can make a donation here.
Gordon’s diagnosis
“I was in Central America for a month and got back to find my son Gordon in hospital. They were doing tests because he had suddenly started having an issue with his speech. Apparently, he had been with a friend who said, ‘You shouldn’t be drinking and driving with the children in the car’, because Gordon was slurring his speech. But he hadn’t been drinking and he realised something wasn’t right. It was clear that he had symptoms that needed investigating. At first the doctors thought perhaps he was having a stroke, but he was only 39 and this seemed unlikely. He had MRI scans and they ruled out a brain tumour.
He continued to be in and out of hospital for around three weeks until, finally, they made a diagnosis. I was there with him, along with his wife and his sister, when he was given the news. It was terrible shock. The professor called us in and said ‘I’m so sorry but I’m afraid it’s motor neurone disease’ and it was one of the worst forms of MND, known as bulbar. It affects around 20% of MND patients and the first sign is usually slurring of the speech, caused by impaired tongue movement.
I remember one of the first things I said was ‘what is the prognosis?’. When the doctor said it was just two to three years I realised I was a mother about to lose a much-loved son. It was so tough to hear, and he told us that he would refer Gordon to palliative care. That’s how our journey with Martlets began.
That drive home was so tough and I will always remember it. I drove us and somehow focused on getting us home safely, but we were all in shock.
I said to Gordon that I would walk every step of his journey with him to the very end, because I loved him so much. And that’s what I did.
I asked him what he would like to do most, because what do you give someone who’s got a terminal illness? And he said, he would like to go back and visit Sri Lanka, which is where I’m from originally and my children have a lot of connection with it.
It was Gordons 40th birthday, so, I took his wife, the two children and him to Sri Lanka for a holiday. They spent the first week travelling through part of the country and the second week they stayed in a hotel where they could be themselves and have quality time together as a family. I also had a huge lunch for 60 of my extended family so that his wife and children could meet his relatives. They’d all seen him grow up at some point in their lives. It was an emotional get together.
Incredibly, Gordon was able to keep working up until eight weeks before he died. He was a teacher; Head of Maths at a secondary school and had only been in the job five months when he was diagnosed. The school was incredible and even though he couldn’t continue in his role, they kept him on as a teacher getting involved behind the scenes, and slowly reduced his hours when he needed to do less.
Gordon’s journey with Martlets
Thankfully, Gordon was referred to Martlets within days of being diagnosed and the service they provided was just immense. As a volunteer, I’d never seen the clinical care the staff provide first-hand, but suddenly I was aware of just how much is involved. My first impression was that this wonderful and amazing team of people were going to do everything they could to make Gordon as comfortable and happy as possible during the time he had. They were doing it not only because it was their job, but because they genuinely wanted to. There was a feeling of being held and of safety; we felt safe in their hands.
From the doctors, nurses and healthcare assistants at Martlets to the housekeeping staff and canteen workers, we felt warmly enfolded in their arms.
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. The medical care was just incredible, but there was also holistic support that looked after every aspect of Gordon’s health and our family’s wellbeing too. They also worked closely with the local MND support service to ensure he got the best all-round care he could have.
Gradually Gordon became unable to swallow anything and needed speech therapy, and occupational therapy to help with his mobility. It was a multidisciplinary approach and there were regular meetings to make sure every aspect of care was covered from medical care to physiotherapy to counselling and complementary therapies. At this stage it was the loss of his speech that was so difficult. He was amazing and used to talk with the help of software on his mobile phone – he would type and it was a women’s voice that came out which was quite funny. He had a great sense of humour.
Within a few months, his condition began to deteriorate further and Martlets visited him at home and sorted him out with specialist equipment to help him to move around. When a family member got COVID, 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.
During that time, he would have regular visits from the Martlets community nursing team and he also used to love talking to the Martlets chaplain. 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. Gordon was extremely brave and always accepted his diagnosis with absolute dignity, courage and fortitude. Perhaps his Buddhist beliefs supported this, but certainly he was never hysterical and never once said ‘why is this happening to me?’ As a mother going through this I never asked why me either, he brought acceptance to it even though it was incredibly tough to take on.
His walking was getting worse as his muscles were deteriorating, and it was becoming difficult for him to keep his spirits up. I was so grateful for the 24-hour helpline that Martlets’ provides; their phone hub is a lifeline for carers. Sometimes I’d call them at 3am in the morning for advice and they were amazing.
At one stage, he had to be rushed into hospital and it was during the pandemic which made it especially worrying. When I visited, he had breathing machines, feeding machines – all sorts of machines that I couldn’t even explain. The doctors and nurses were all wearing masks and hazmat suits and it felt so depressing. Seeing him in that environment with all those tubes and wires was very hard.
They transferred him to Martlets’ inpatient unit straight from the hospital. It was the height of the pandemic, but even so the team were there to welcome us to make Gordon and all of us feel comfortable. And that is where Gordon was at his happiest during those last weeks – at the hospice.
He felt safe and he found peace there. The Doctors and Nurses had patience and time to listen to him, they were dedicated, unflappable and non-judgmental. I simply can’t find the adjectives to explain that incredible love and care. And he was a very special man, and they loved him so much.
Because it was all happening during the pandemic everyone – staff and visitors – had to wash their hands, have their temperature taken, and wear PPE. That was difficult and could’ve felt impersonal, but the staff went out of their way to build a connection with Gordon.
I remember once when he’d just come off his breathing machine and couldn’t sit up, I witnessed one of the nurses kneeling on the floor next to him at bed level. So that even though she was wearing a mask, they could connect through eye contact and it felt more personal. It was small things like that which made such a difference and helped him feel safe and cared for.
I used to wheel him out into the hospice gardens – it was such lovely summer weather. I’ve heard people refer to Martlets’ staff as angels but for me it is their humanity that is so amazing to see. They have a level of empathy, compassion and understanding which is at the very heart of what it means to be human. They are people who understand fully what it means to face terminal illness and all that is involved, not only from a medical perspective, but from a human perspective. Gordon was offered pre-bereavement counselling, he found that a great comfort and it helped him come to terms with his death. Some of the nurses were very young and in their 20s, yet although they didn’t have as much life experience as their older colleagues the love and the unflinching care they gave was remarkable.
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. Patients come in for respite care, pain relief and to get their medications balanced and then go home again. So just because you come into the inpatient unit it doesn’t mean you’ll never go home.
The team were keen to encourage Gordon to go home again as that’s where he had said he wanted to die. The discharge nurse at Martlets arranged for someone who understood MND to stay with Gordon at home overnight. However, he was at home for two days and said to me ‘Mum, I want to feel safe. I feel at home at the hospice and I want to go back there’. He felt so at peace at Martlets – secure, safe and wanted. And he didn’t just get that feeling from the doctors and nurses; it was from everyone from the housekeeping staff to the cooks in the canteen to the counsellors and care staff. There was this feeling that they genuinely wanted him there; he wasn’t a burden; he was a guest in their care.
Often tensions can run high as someone nears the end of their life and difficult decisions have to be made in the family about arrangements. The doctors and nurses never judged me whatever emotions I was feeling and expressing. They would step in and bring a sense of understanding and calm. Somehow, they would help us all to feel listened to and supported us in resolving our difficulties.
The spiritual care was also such a support. Nicholas, Martlets’ chaplain at that time, used to spend an hour with my son every morning, even on his days off sometimes if Gordon needed him. That was as important as the medical care as 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.
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. Gordon had been on the IPU for eight weeks and I had been there all day, every day. The nurses were looking out for my wellbeing too and one of them suggested I go home for a short break and a rest. It was during that period that Gordon died.
There was peace and there was 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 got back to the Hospice 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.
Gordon and our family were offered wellbeing therapies such as aromatherapy, acupuncture and massage. It’s not just the person who’s dying. For me, it’s those who are left behind which are important. And Martlets know how to look after everyone. They know how to get the family involved in ways that feel supportive and comfortable.
The bereavement team wrote to Gordons wife, Children and his sister six week after he died to ask if they would like counselling, Gordons sister lived in London, but still the team offered reciprocal support from an organisation close to her. Gordon’s wife and children benefitted from the counselling, and I went along to the social evenings Martlets bereavement team offer which were just the right mix of warmth, empathy and social activities where I could be myself.
The importance of Martlets’ new building and facilities
The new hospice building will make a huge difference to the local community. You never know when you or someone you love might need hospice care, and Martlets will be there to support you at home or in the hospice if you do.
People never think it will happen to them or their family. It’s difficult to think about, but we need to, because terminal illness can affect anyone at any time. You think ‘my life is cozy’ and that this stuff happens to someone else; you feel sorry for the ‘other people’ it affects, until it touches your life and your family.
The reality is it can happen to you, or someone you love, in an instant, at any time. That’s when Martlets will step in and somehow make an awful situation more manageable. They will remind you that life is there for living right until the very end. They will take the time to find out what matters most to you and those you love and put that at the heart of the care they provide. And the new building and facilities will ensure this incredible level of care is accessible for decades to come.
Times have moved on and hospice care is changing. Martlets recognised that new facilities were needed to continue to care for patients and families in the best way possible. All the patient rooms will be ensuite and this will have a positive impact on privacy and safety. Gordon had to walk along the corridor to the shower room. Now, every patient will have private toilet and washing facilities and all rooms will have access to the hospice gardens. I feel so happy that everyone will be able to enjoy the gardens as they meant a lot to Gordon and me. It will be wonderful for patients, families, and staff to get out into nature; the gardens connect us with the cycle of life and bring a sense of peace.
I have visited the building site in Wayfield Avenue and it’s lovely to see work progressing. Every single detail for the wellbeing of the patient and their loved ones have been considered, from having special skirting boards installed for easier cleaning, to ensuring every room has oxygen piped directly into it, to having more comfortable and safe private spaces where patients and their loved ones can find solace.
I’m very pleased to know there will be more designated family space and a new café to gather in. There will also be a new Sanctuary space in which to reflect and find peace. These spaces are so important because for families the grieving starts with news of a terminal diagnosis. It’s a difficult process and visiting a loved one at the hospice can involve so many different emotions. Having private family spaces and the new Sanctuary is so important in supporting this process. I had two-and-a-half years to grieve my son’s death before it happened; I grieved with him, but we also lived our lives as fully as we could in the time he had.
Relatives who have lost a loved one on the inpatient unit may want to go to the Sanctuary after that person’s death to reflect, but walking past the room they died in can be upsetting. Where the new Sanctuary is going, I think is ideal. It will be at the front of the building and accessible without walking through the ward. Also, the new café will be so welcoming and just inside as you come in through the main entrance. It will be wonderful to have local neighbours come in as well as patients and families. I hope it will encourage a real sense of community in the local area and connect more people with Martlets.
This new hospice is for everyone in our community. I have seen people come into Martlets who are young and old, from different racial backgrounds and genders, and from the trans community. Martlets also ran a project to support end-of-life care for those experiencing homelessness in our community. Brighton is a diverse city and with these new facilities Martlets will continue to make hospice care accessible to everyone.
People often think that Martlets is only for people with cancer, but they look after people with so many devastating terminal illnesses including MND, Huntingdon’s, Alzheimer’s, Parkinson’s and multiple sclerosis. And hospices aren’t only for older people. Sadly, I have seen patients at Martlets who are in their early 20s and have suddenly and unexpectedly been given a terminal diagnosis.
There is a serenity here at Martlets that gives people an inner strength. You’re not just a patient, you’re a person.
As a community, we’re lucky to have Martlets; it’s there for us – the people of Brighton & Hove and the surrounding areas. The hospice provides care that you just wouldn’t find anywhere else. I see the amazing things that everyone does here to make peoples’ lives more comfortable. They care with such dignity and respect, and the staff are always there to listen even when they’re busy. They look after the families as well as the patients and that’s such very important work that must continue. The new building and facilities will enable Martlets to keep on caring for many years to come.
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Published 16/05/2023