Teresa’s story

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“My message to other people would be, don’t be afraid to be part of a hospice, because there are just so many benefits. It’s not just about dying – it’s about living well.”

“I was first diagnosed with an enlarged heart, and then later heart failure, eight months before lockdown, in July 2019. We had just been on holiday to Gran Canaria, and I felt very tired and lethargic. I just put it down to being rundown, but then it got so much worse. I was starting to think I was having a panic attack, because I couldn’t breathe properly.”

“We were abroad so I didn’t want to go to hospital there. So I spent most of the holiday in my room, resting. The flight home and through the airport was an ordeal, it was just so exhausting. I don’t know how I made it home, I felt so ill.”

“The day after getting home I went to my GP and saw the practice nurse. They were quite concerned about my breathing, and wanted to send me for an urgent chest x-ray. I remember saying to the nurse, ‘Say it like it is. Do you think it is a tumour?’ The nurse said she couldn’t think what else it could be, because the onset had been so rapid.”

“I went to the hospital and had the x-ray the next day, and the results came back very quickly. The consultant told me ‘Your lungs are absolutely fine, but your heart’s not looking good.’”

Being diagnosed

“They use the words ‘heart failure’ and it is just sounds so bad. It’s such an awful expression – and you assume ‘well that’s it, I’m done.’ It’s such a rollercoaster of emotions when you get a diagnosis of a condition that cannot be cured.”

“I remember thinking that if it had been a tumour, they could have got rid of it. But when your heart is gone, it’s gone. There’s no way back.”

“My Mum died from an unidentified heart condition almost 20 years ago, but we now know that she had the same condition that I now have – dilated cardiomyopathy. That immediately made me think, ‘this isn’t good news.’”

“You start researching the condition on the internet, which is the worst thing you can do. It was saying that the life expectancy with my condition was realistically 3 years. The worst part was knowing that my children would be looking it up to, and reading the same things. You start to think what they are going through, and that’s hard.”

Feeling locked down

“For six months before Lockdown, I already felt locked down with my illness. My condition really worsened. I couldn’t physically go out, my condition was just too debilitating. If I managed to go out such as for a coffee, it would totally wipe me out for the rest of the day.”

“I had a stage where I literally could have slept for 20 hours out of 24. I actually thought I was dying because it was that bad. That was before the cardiology team helped to optimise my medication.”

“Lockdown showed other people how my life felt – stuck indoors, unable to socialise or do anything. That is the life of a person with a chronic condition where they cannot physically leave the house. I think it made people see life from my point of view.”

“Just a simple thing, like when you go to the shops, you don’t realise how far the parking bays are from the shops. I’d never had to think about it before. Having the energy to go to work, the shops, and meet up with friends. I had taken all those things for granted.”

“I’m always the bright, bubbly person, but my heart failure diagnosis really got me. It knocked me sideways.”

“Your whole life is affected when you have a diagnosis like heart failure. For me, it wasn’t a gradual process at all. The sudden onset of my symptoms made it almost like I had hit a brick wall – and that’s quite scary. It had a big impact on my mental health, and took a lot of getting used to.”

Being put in touch with St Clare

“The cardiology team at the hospital were very good. The heart failure nurse said, ‘If I say something to you, don’t react straight away… Have you heard of St Clare Hospice?’”

“When someone mentions to you that you could think about a hospice for support, you just think ‘Am I going to die?’ Is this their way of telling me that I’ve not got long?”

“I looked at him like a scared rabbit caught in headlights, but he then said, ‘They offer some amazing support services, how do you feel about going along and seeing what it’s all about?’”

Attending the Living Well group

“So I came along to the Living Well programme, and found it amazingly supportive.”

“St Clare doesn’t just look at how you’re feeling today – but at the whole picture. Being with a group of people who are also expressing things that you have gone through too, and feelings that you have, is just so meaningful.”

“When you are experiencing fatigue, it is easy for other people to just say ‘I know how it feels to be tired.’ But tiredness and fatigue are two completely different things. And people don’t understand that. But being with the group at St Clare, they 100% understood and were going through the same thing as me. It’s very supportive to have the feeling that I’m not alone.”

“To be able to express yourself, and talk freely about what you’re scared of, and what is important to you and your future, is so important. And St Clare can give you that – the opportunity to voice how you feel.”

“The Hospice is such a friendly environment, it’s amazing what you guys do. I’m really humbled and feel it’s been a pleasure to have the experience of St Clare, and I would always look for their support in the future – and I know it will be there.”

Help from the Occupational Therapist

“I told the Occupational Therapist at St Clare that I was having trouble going upstairs to the bathroom and was struggling during the day. It meant that I ended up staying in the bedroom all day to avoid having to use the stairs. You end up getting up late and going to bed early, just because of not having a toilet downstairs – which is just crazy.”

“The Occupational Therapist from St Clare came round and assessed the house, then helped me to get the council to install a downstairs bathroom for us. It made so much difference, it was life changing.”

“There were other simple things, like the Occupational Therapist arranged a perching stool and other equipment to help me to keep doing everyday tasks, like peeling the potatoes in the kitchen.”

“Things which might seem small, but mean I can get on and live my life, and remain independent.”

The difference St Clare made

“Coming to the Hospice has helped me realise, firstly, that I’m not alone in how I feel.”

“I also used to be one of those people who heard the word ‘hospice’ and thought it was for people who were dying. Now I see it so differently…”

“When you come to St Clare it suddenly becomes apparent that it’s not about dying, and it’s not a sombre place. It’s full of happy people, happy staff going about their work, happy visitors, happy people attending other groups.”

“We have lunch and glass of wine as part of the Living Well group, and the food is amazing. The dining room is buzzing with people.”

“I also came to the Breathlessness group, which was very helpful. I have practiced the techniques, which are now part of my everyday life. Like how I breathe as I go up the stairs. Now I do the techniques without even thinking about them, and it has become that little bit easier. That knowledge really helps you, and stops me panicking when I feel like an attack is coming on.”

“One thing I got from attending the St Clare groups was learning to accept what is going on, and not to be angry about it.”

“St Clare is almost like a walking stick – I know the support is there. St Clare is another aid to my life. The main thing I get from St Clare is support.”

Planning for my future

“I know that if I need something, or I get worse, I can tap into St Clare and there would be somebody to support me. There would be somebody to help me through it – whether that be emotional or mental health. I think we’re very lucky to have a place like St Clare.”

“The Hospice has given me that confidence that when things do change and deteriorate with me, I’ve got someone to call on and a support network.”

“I’ve thought about it several times, I always used to think I want to be at home but I think I’d quite like to die at the Hospice. It gives your family that freedom to not endure all of it 24/7 and it gives you space as well. I don’t think I’d have come to that conclusion if I hadn’t done the Living Well programme, I don’t think I would have seen the benefits ultimately.”

“My message to other people would be, don’t be afraid to be part of a hospice, because there are just so many benefits. It’s not just about dying – it’s about living well.”

“It’s not just about your last few days, it’s a long-term thing. It’s an approach that you can tap into whenever you need to – it is there for you.”

“I would advocate and encourage people to look at the services available at a hospice. I didn’t realise how much a hospice could help someone like me, until I experienced it myself.”

“Now I want to help others, by sharing my experience in the hope that it gives them the confidence to try hospice care too. It’s about breaking the taboo of going to a ‘hospice’ and opening it up for everybody.”

“St Clare is there for you, for everybody, who is affected by dying or bereavement. It’s not just about the lady who isn’t going to make it tomorrow, or the gentleman who’s never going home again. It’s for people like me too, who go to the Hospice for support, then leave. I go home and cook my dinner, and do my crocheting, and live my life. There’s so much more to hospice support than just care at the end of your life.”

– Teresa

 

 

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