Now they have experienced it themselves, they want to share with their community how St Helena Hospice “puts their arms around your shoulders”.
After various treatments for prostate cancer over 12 years, Ricky was referred to St Helena a year ago by his oncology specialist. A little apprehensive at first, Ricky soon began to look forward to visits to his home in Harwich by Emma Mazerolle, a hospice in the home clinical nurse specialist. He remembers:
“We thought hospice was just right at the end of life. Then I met the people and saw how nice they were, and I know now it's more than for the end of life. End of life is there, but there's a lot happening before that. I find it a lovely organisation that hasn't made me feel gloomy but has livened me up! It really made me feel better. It's one of those wonderful organisations we only read about in the obituary column
Anne, Ricky’s wife of 61 years, agrees: “When you see ‘a person went into the hospice’, that's the sort of thing you think of; it's for respite or for [the end]. I didn't realise what went on in people’s homes was available. It's for everybody. We didn't know that. We thought that you had to be sort of ‘on your last legs’, which is not true. It can help you through so many days.”
More than 90% of the patients and families St Helena cares for are supported in their place of residence, such as their own home or a care home or nursing home. The support takes on different forms and soon after the couple met nurse Emma, they had a visit from the rehabilitation team: Laura Murton, specialist occupational therapist; Nicola Smeeth, specialist physiotherapist; and Tarnya Robey, therapies assistant.
Years of playing rugby and keeping fit means Ricky has taken Nicola’s daily gentle exercise recommendations in his stride, while Laura and Tarnya work with Ricky to make sure he remains as independent as possible at home - and the visits usually involve lots of laughter! Soon after first visiting, they arranged for him to have a reclining chair to help manage pain, and handrails to help him step into the garden he loves.
Ricky and Anne admit they always make the best of everything, valuing time spent together with their family and friends, even more so after Anne too was diagnosed with cancer. Anne recalls:
“The big blow came when I got multiple myeloma and that affected both of us because he was then worrying about me.
“We both had trouble with chemo affecting us badly. The hospital staff were fabulous to us, everybody all really tried to help. Everybody has been so helpful and that means such a lot. But it did me really well because three and a half years on and I'm still ok, so I'm able to help him and he's able to help me and between us we muddle through. We have wonderful friends, and we've got fabulous daughters, and the grandkids are good, they'll do anything that'll help if we need it.”
Nurse Emma pays monthly visits to check on Ricky’s health and wellbeing, give advice on a range of topics, and to see how Anne and their family are feeling. In between visits, if they have questions or worries they know to phone SinglePoint day or night.
“We feel as though we've got an arm around our shoulders,” says Anne. “Although we knew about the hospice, we didn't know about what they did in the home; the intricacies of the actual way it works, all the good things that come. I don't feel as worried about the end, which will eventually come for both of us. I don't feel so worried about it now because I know there's this organisation that puts their arms around your shoulders.”
Ricky and Anne are open about the future with their three daughters, having important conversations about practicalities, finances and funerals, which often become light-hearted and full of affectionate laughter, helping them to address the things that matter to them as a family.
Ricky has expressed his preferences by completing his My Care Choices Record, which is held on the My Care Choices Register; an electronic record of a person’s decisions about the kind of care they wish to receive in the future if they were more unwell, and their preference for the place of care at end of life.
Ricky says: “I've answered all the questions, I'm not scared. Life is life, isn’t it really? Life is what it is. Life is what you make it. I know I'm ill and I've had a bloody good innings and I'm grateful. Every day is a bonus.
“Every time I think 2022, is this the last year? Or my favourite flowering plant out there in the garden that comes once a year; last year I thought, will I see it again? Now I am seeing it again, it's come up! It's a flowering cherry and I love it.”
Having hospice in the home with the rehabilitation team and SinglePoint, and building a relationship with nurse Emma as a constant source of support, is reassuring for the couple and each visit uplifts their wellbeing. Ricky explains:
“One day the conversation went on to something quite emotive, I don't know what happened, but it brought me to tears and Emma immediately said to me ‘you go ahead and have a cry and don't feel ashamed’, which I thought was lovely.
“She's someone we can lean on. That's a lovely thing to have. So really, the ‘being referred to the hospice’ is not somewhere they're sending you, to be quite crude, somewhere you can die in peace. Oh, it's more than that. It's everything before dying. That's the last thing you think about really when you see Emma, because you always say to each other ‘I'll see you again’; she moves the future on.
“So many good people in the world, so many good people and it's a pleasure to have lived with them.”
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