Barry with nurse Emma
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 he discovered that hospice care can improve his quality of life. Here he explains how it’s 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 that feeling of doom 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 programme is at the very end of the session, when we do meditation. It 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 me to relax and calm 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, help me to go to a really tranquil place. But the best thing about the 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 the Day Hospice 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. We have a good laugh, and we joke and will often play cards, do some art activities or simply just have a chat. 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 fighting a losing battle when it came to things like this but with Emma’s help I feel like we’re making progress.
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 I thought it 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.
For more information visit Birmingham St Mary’s Hospice