Susan Ross, 71, from Welling, has had to be a tower of strength for many members of her family over the past three decades – so being able to rely on Greenwich & Bexley Community Hospice herself for support at some very difficult points has been a lifeline for her. Here Susan explains why the help offered by the hospice’s varied services means so much….
Susan’s youngest daughter Caroline was just a teenager when she started noticing worrying health symptoms.
By age 15, Caroline, now 44, could no longer walk in a straight line and was frequently falling down stairs. Tests revealed she had a condition called Hypertrophic cardiomyopathy, where a thickening of the heart muscle makes it hard for blood to be pumped around the body. But this was only the start. Further tests carried out at St George’s Hospital in Tooting found mum of-one Caroline also had a condition called Friedreich’s ataxia (FRDA) – a neurological disorder that affects mobility and coordination which deteriorates over time.
The knowledge that Caroline would need a lot of support in later years and likely would die young, was very hard to come to terms with for both Susan and her late husband Nigel.
Susan says: “We discovered that both Nigel and I carried the gene that causes FRDA, but our two other daughters weren’t affected by the condition. Caroline has been very poorly for a long time and we don’t expect her to live long. I’m surprised she’s still here in some ways. It’s very hard all round.” Caroline was first referred to the hospice care team in 2020 – but the family already knew first-hand about its work.
“The hospice had cared for Nigel before he died in 2011,” Susan explains. “He’d had bowel cancer and was ill for a couple of years. By the end he was too poorly to undergo any further treatment.”
“The hospice took over his care from hospital, got him a bed in the Inpatient Unit and sorted out his medication. He was supposed to come home and the hospice had organised all the equipment we’d need, but he actually died in the IPU.”
“Nigel was very content there and was so well taken care of that I could go home at night with some peace of mind. His pain was dealt with, the carers would wash him, and all this meant that I could just be his wife and spend time with him. The staff were also lovely with me and I could talk to them about anything.”
After losing Nigel, Susan – who also lost her eldest daughter Francesca to cancer aged just 52 – had weekly counselling for several months.
By the time Caroline was referred to the hospice, Susan had moved into her home in Erith to help care for her and look after Caroline’s son Leon, who’s 16.
“I’ve also received wonderful support from the hospice social worker Wendy after deciding to apply for special guardianship of Leon,” Susan reveals. “I’ve always been close to him so it made sense that I would continue to look after Leon after Caroline is gone. I started the application process in October 2021.”
“Leon is supposed to be doing exams at school but he’s not coping very well with his mum’s condition. He’s developed anxiety as a result of the pandemic and has been referred for counselling. He also has an underactive thyroid that makes him very tired, and lost his dad in 2013 so he’s been through a huge amount.”
The process to become a special guardian is time consuming and complicated, with police checks, many references required and forms that are hard to complete. But with Wendy’s help, Leon and Susan received the wonderful news that the guardianship had been granted in April.
“Wendy has been there every step of the way and it’s been lovely to have the moral support as it’s quite an intimidating process,” Susan says. “It was such a relief when the news came through.”
“I’ve been surprised about all the ways that the hospice has helped out our family. They do a great job and they’re not only there to support you at the end-of-life. The hospice helps people to live better.”