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“It’s nothing like what I thought a hospice would be”

17 December 2019

Like a lot of people, Barry was scared when he heard the word ‘hospice’. But after using the Space to Breathe programme at Birmingham St Mary’s Hospice – which is a breathlessness clinic – he discovered that hospice care is improving his quality of life. Read his story and find out how hospice care is making a difference to him…

Like most people, when I heard the word ‘hospice’ I thought that was it, that’s the end for me. But I’ve been coming here for a while now and I’ve realised it’s not the end at all.

I’ve got heart failure – my heart is working at just 15 per cent – and so because of that, I suffer with breathlessness. Breathlessness was really affecting my day-to-day life and was something that worried me a lot, so my doctor at the hospital suggested I visited ‘Space to Breathe’ – a breathlessness clinic at Birmingham St Mary’s Hospice.

Space to Breathe has helped me immensely. Because my heart isn’t very strong, I find myself having breathlessness episodes quite often, which can be scary. With Space to Breathe, the nurses have taught me how to cope and recover when I’m having one of these episodes. I know I will never not be breathless – my heart is just too weak – but at least now I don’t think I’m going to die every time I struggle to breathe. I no longer have the ‘doom’ feeling when I feel an episode coming on and instead, I am able to sit back, use the tools the nurses have shown me, and recover. I can’t begin to express how much this has helped me – it’s so good to feel that little bit more in control of my breathing.

One of my favourite parts of the Space to Breathe programme is at the very end of the session, when we do meditation. Meditation always takes me to a really tranquil and soothing place. Even better, is that these meditation sessions are available as a resource to take home. So if I’m ever feeling stressed, anxious or just a bit down, I can put on one of these CDs and it helps to relax and calm me down.

Coming to the breathlessness clinic made me realise how wrong I was about hospices. I thought they would be all ‘doom and gloom’ but it’s not like that at all. It’s a very happy place with lots of different services that you can tap into, helping to improve your quality of life. So when I was offered a space at the Day Hospice – a 12-week therapeutic programme – I went for it.

The Day Hospice has been brilliant. I’ve really enjoyed doing the tai chi sessions which, like Space to Breathe, helps me to go to a really tranquil place. But the best thing about Day Hospice is that it gets me out of the house.

I suffer with depression and when I spend a lot of time at home, I find my depression gets worse and worse. Coming to Day Hospice forces me out of the house which has done loads to boost my self-esteem. I feel safe coming here because I know there’s staff on hand to help me should I need it.

I’ve also met some great people since coming here. We have a good laugh and joke and will often play cards, do some art activities or simply just have a chat with each other. It’s been really helpful to have support from people who are going through something similar to me – it’s just nice to know that I’m not alone.

As well as providing me with care, the Hospice is also supporting me with other things, like sorting out a new home. I live in a first floor flat which, being in a wheelchair, isn’t ideal. Although I’ve got a stair lift, I still struggle to get up and down which stops me from going out. Emma, who is a social worker at the Hospice, has been fantastic. She’s helping me to contact the council, so that I can get a ground floor flat with a wet room.

Having Emma’s support is a huge weight off my shoulders. I don’t know how she does it but she just manages to get things moving. I know that if it was just left to me, I would really struggle with the application, which would make me stressed out and could bring on a breathlessness episode. I always felt like I was a fighting a losing battle when it came to things like this but with Emma’s help, I feel like we’re making progress.

Since coming to the Hospice, I feel that my state of mind has improved loads – and that’s what’s most important to me. I used to feel depressed all the time but coming to the Hospice has taught me how to cope when I’m feeling low, it gets me out of the house, and I’ve met some wonderful people too.

I feel like I’m finally at peace with my illness. It might sound morbid but I’m actually planning my funeral at the moment, as I don’t want my children to have to worry about it. It’s strange isn’t it; death is the one certain thing that will happen to us all but we’re so bad at talking about it. A few years ago, I wouldn’t have dreamed of talking about my funeral but thanks to the Hospice’s support, I now feel comfortable to do so. It’s quite empowering, as I know my future care and plans will be on my terms.

For me, coming to Birmingham St Mary’s has been nothing like what I thought a hospice would be. I can’t get across how happy it is here, which is down to the fantastic staff and volunteers. You get so much support and I truly feel like I’m in control of my care.

Thank you Barry for sharing your story with us. If you would like to find out more about our different services, please take a look here.