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Hospice: Learning to embrace the ‘H’ word

Author: Angela Wilson
16 July 2014
  • Angela pictured with her mother on her 69th birthday, six months before she died at Isabel Hospice

Angela Wilson, whose mother was cared for at Isabel Hospice, writes about her positive experience and describes how staff made an 'unbearable situation, almost bearable.'

When my mum first got diagnosed with terminal lung cancer back in 2011, the hospice became known in our family as simply the ‘H’ word.

It shot right up there with all other things that must not be named. Voldemort. Macbeth. Betelgeuse.

It became the ultimate elephant in Mum’s front room.

It all stemmed from fear of course. Fear of what a hospice represented to us. To Mum.

It’s a hard concept to engage with. Especially at the beginning. For the word ‘hospice’ to be referred to at Mum’s diagnosis was inconceivable.

We’d sat in that oncologist's office in disbelief as he’d used the words ‘inoperable’ and ‘incurable’ in relation to the spritely, energetic & lovely woman who sat next to me.

It felt too ridiculous to accept. Like referring Mother Teresa for anger management. Or suggesting that Jeremy Clarkson train as a therapist.

It was the fear that created our prejudice. In our imaginations everything about the hospice experience screamed doom. A clinical and hostile environment. Somewhere bleak. Foreign. Almost mythical. Like the most inhospitable part of Middle Earth.

As anyone who knows me will testify, I hate being wrong. Turns out we were though. Monumentally.

'It doesn't have to be a one-way ticket'

The first surprise was learning that going into a hospice doesn’t have to be on a one-way ticket.

We’d thought it was a case of once admitted, never released. But it turns out people can go to recover from symptoms. Or just to have some respite.

That’s how it happened with Mum. Up until that point she’d not even wanted the word ‘hospice’ to be mentioned in her presence. Let alone set foot inside one. But she was persuaded to go in for a week. Have treatment for elevated calcium levels.

I guess you could say it was a bit of a trial period. And at the end - she was most definitely sold. We all were.

The Isabel Hospice is tacked on to the side of the QEII hospital in Welwyn Garden City. But walking in there that first time it couldn’t have felt more different to its neighbour. It was light. Bright. And most noticeable of all - calm.

Care had been taken with the maintenance. The decor was sunny in tone. There was even a courtyard garden that backed on to the rooms. With colourful flowerbeds. And tweeting birds. Real life, that is. Not Twitter.

And there was something else. Something about that place that somehow made everything feel okay. When it so obviously wasn’t. The only way I can explain it is whenever I walked in the front door, I felt different. Those feelings of dread. Of panic. Of constant tummy-twisting anxiety that I carried around with me from the moment I woke up. They temporarily left me.

Maybe it was because everything was normal there. To us, our lives for the past 18 months had been infiltrated by abnormality. Within that building though, these were things they saw and dealt with every day. To them, they were normal.

It’s a bit like when you suddenly hit intense turbulence on a flight. In complete panic you look for the air steward. Only to find they’re not one bit fazed. Taking it all in their stride. Even joking about with their colleagues. It’s comforting. It feels safe.

'Like a family'

People joked about in the hospice too. Volunteers whistled tunes. Stopped by just to say hello. It felt like a strange kind of commune. Everyone mucking in. Like a family. 

And as for the nurses. I can’t praise them enough. The whole Isabel team made my Mum - and the rest of our family - feel so at ease and cared for.

The most wonderful thing of all though - outside of the medical care and the attention - was how they took time to connect with Mum. As a person not just a patient.

On the first day she was there, one of the nurses helped her to get comfortable in bed. Her pain was pretty bad at that time. It was quite an ordeal to even sit up.

As the nurse was helping to manoeuvre Mum, she’d introduced herself. Said her name. I wish I was 100% on this. But I’m pretty sure it was Carol. Whatever it was, it was also the name of an old song. One I didn’t remember (being the whipper-snapper that I am). But Mum did. Despite being in pain, she started singing the song. And the nurse joined in.

My Mum was one of the shyest people about. But singing made her feel free of everything. I could see how much that small shared moment meant to her. That connection. It lit her up.

It was such a beautiful glimpse into something special. The nurse and her patient singing together. A comical serenade of two. I remember being so touched. By this small moment of joy. And how well my Mum was being cared for by a complete stranger.  

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Even during her final days I remember the atmosphere at the hospice being surprisingly light.

One of the nurses even organised for a hairdresser to come in and cut her’s hair. Mum always liked to look good. It was important to her. Even when painting and decorating, her overalls would be colour co-ordinated! Something as seemingly insignificant as having her hair done - even at that late stage - she so appreciated.

The medical staff explained everything to us carefully and sensitively step by step. Spent time with me privately to answer my own questions about what to expect during the end of life process. Helped me to prepare for what was to come. To manage my fears. They kept me calm at every stage and able to be there for my Mum in the way I wanted. I felt supported. Not alone.

They guided us through the whole experience with just the right amount of support. Yet without encroaching on our time and experience as a family.

'We all held her' 

And then she’d died. With us all holding her. Me, my brother, my stepdad. The nurses left us alone to be together with her. Then after some time they took us off to a quiet room. Made us tea - the Great British panacea.

They never pushed us to do anything. Just encouraged us to stay as long as we wanted. Do whatever it was that felt right.

They said they’d get Mum ready. For us to see her again. One last time. To me though, this felt unnecessary. It was pointless. Mum had gone. I didn’t want to go back to the room. See a lifeless body where she once was. And I certainly didn’t want them to construct some artificial post death presentation. I almost didn’t go. But I did. And I’m so glad for that. Because - as per last time - I was wrong again.

There was nothing artificial about it at all. They’d put her favourite nightdress on her. The lilac one I’d got from M&S. With the little bunches of lavender on. Her hair had been brushed. The sheets were clean and tidy. Neat. It seemed right for someone as fastidious as Mum. She’d have approved.

And most of all she looked young. I was struck by her dainty features - her slightly upturned nose, her high cheekbones. She looked so youthful and pretty! I’m grateful for having that final memory of seeing her. Looking so serene. Beautiful. Rather than the distresses of her final breaths. I look back now - two years on - and so appreciate the nurses giving us that last alternative image of Mum.

A huge comfort

The hospice staff somehow managed to make an unbearable experience just about bearable. It’s quite unbelievable really. Especially considering how fearful we were of the place and everything it represented.

In many ways that in itself is a huge comfort. It highlights something I discovered in many different guises throughout that whole period of Mum’s illness. That the fear we have of something is usually far scarier than the actual experience. Everything becomes normal. And you get through it. Step by step. It’s a liberating realisation. If you’re forced to face that thing that scares you most and you manage to get through it. Well. You can get through anything.

My experience at the Isabel Hospice enabled me to maximise the positives in what was a horrendously negative situation. I am exceptionally grateful for that. I don’t think there could be anything more important to me than positivity. It’s what keeps me going. Especially when the chips are down.

I’m also grateful for my sense of humour for getting me through such a difficult time. I started my blog - Funny Matters - to share my experience and connect with others. But also to promote the importance of humour during dark times. I believe that funny does matter. And that being able to find the funny amid the fear is vital when going through dark periods. It’s my hope that others will identify with what I write and gain some support from our shared experience.

For anyone who’d like to keep up with my blog, they can visit www.funnymatters.co.uk and sign up to receive future posts by email. I can also be reached via the Funny Matters Facebook Page. And tweeted via Twitter.

 

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