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In the second of our Open Up Hospice Care stories, we look at the little things that make a difference for people staying at the hospice and their families.
During a short stay at the Hospice, Steve Hoggarth, who had motor neurone disease and was 47 when he died, said:
“I couldn’t wish for a better place to be, maybe apart from home. I have good banter with the nurses. The food is good and it’s nice and quiet when you want it to be, it can be quite noisy when you want it to, having a laugh and a joke with the care team, who are all wonderful. That’s probably what I like about it; it’s not home but it’s close to home.”
Steve’s comment summed up what St Helena aims to do to help people during a difficult time. Matron, Sue O’Neill, explains how staff and volunteers at the Hospice aim to make people feel at home while they are away from home:
“We try really hard to make people feel welcomed and that means the little things matter. It means taking care of people in a holistic way and asking what matters to them. So, in the morning, what is it that you like to eat and how would you like that served? Do you like your tea in a cup that doesn’t spill, or do you prefer a china cup and saucer? Because starting your day in that way makes a difference.
“Open visiting is huge for our families; to be able to come and go as they please and to be with their loved ones as much as they can. Particularly in warmer days, people can go outside together to enjoy our beautiful gardens that our volunteers work so hard in to support us, and watch their children or grandchildren playing on the grass.
“That’s important to us to welcome children and pets to visit; they are an important part of people’s lives. We have our own cat, Paddy, who makes a big difference. People enjoy the familiarity of home.
“A lot of people who come into our care have potentially had alterations to their diet and their tastes. Our catering team has a regular planned menu but people can make their own choices around that. Sometimes a family will bring in their own food, and we’re happy for that to happen. People do enjoy an occasional glass of wine or glass of beer with their meals, that’s welcome too. And there are opportunities for people to enjoy a social life where they can be with their families for as long as they possibly can, perhaps families who want to eat together can come in for a Sunday roast.
“It’s really important for some of the individuals who find themselves in our care, to enjoy one of our relaxing Jacuzzi baths; sometimes with music, sometimes a beverage of their liking, sometimes with fruit. Or they may have a complementary therapy for a very restful evening and a full night’s sleep perhaps.”
Laura, daughter of former Mayor of Colchester Martin Hunt, agrees it is the little things that make a difference during a difficult time. Laura said:
“My dad had stomach and oesophageal cancer and so when you are caring for someone who can’t eat at all the majority of the time, it’s very difficult to get square meals yourself, especially when you are with them all the time because you don’t want to torment them by eating in front of them. Also, you are all over the place and probably not very hungry, so self-care is very difficult when you are caring for a relative. It’s really tough, but it’s so important.
“So when I went to the Hospice, especially when I was with dad in the evening, I would get a couple of square meals a week. They would cook me something beautiful in the kitchen and it would be amazing, not something out of a vending machine or out of a packet, it would be real food. And it is things like that when you are in this tornado, that’s the stuff that makes you stop spinning. To be able to sit down for ten minutes and have a lovingly prepared meal, made just for you by someone really kind – that’s everything.
“If I could sum up the Hospice, I would say love and support. The atmosphere is one of love, understanding and kindness - and joy in small things. Not anything I would have expected. Not sad, not depressing, definitely not downbeat. It’s the opposite; it’s a place of peace and love and safety.”
Toby Freeman, CEO of the Robin Cancer Trust, feels the Hospice helped him and his family spend quality time together with his big brother Robin, who had a mediastinal germ cell tumour and was 24 when he died. Toby said:
“The Hospice allowed us to have a period of saying goodbye and putting good memories together. We had some amazing experiences. We went out and about, we weren’t stuck in the Hospice.
“Rob and my eldest brother went out to see a final metal concert and they had the best time! We also had a really nice family day out at the zoo where Rob had a zookeeper experience, and we had one last family-photo shoot together. The whole point was the hospice could help us do these things.
“At the Hospice we could watch our DVDs, play our video games, reminisce, swear, do whatever we needed to do, even have a cry if we needed to. I could still be Rob’s brother; we could still joke around. We felt we were in a place where we could be us again without the pressures of illness and having treatment and looking after him and worrying about his care.
“Someone was always there to do the care for us so we could just be a family. They allowed us that freedom to be a family, spend time with Rob and get our last memories in.”
While hospice care reaches far wider than the care St Helena provides inside the Hospice, Matron Sue said:
“For people who stay at the Hospice, these things matter. That is the art of nursing; it’s the little things that matter when life is so short for some people.”
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