Life after Bobby: Hospice Care Week

This is the view of the Rocky Mountains in Banff taken from Bow Falls yesterday. What has this got to do with Hospice Care Week? Everything.

One of the objectives of Hospice Care Week is to raise people’s awareness of the work that hospices do. There are many myths and misconceptions about hospice care that could do with being busted:

1. That hospices are just where you go to die and are all about death – of course death is part of it but they are very much about living a good life before having a good death, and the support doesn’t end when the person dies

2. That hospices are only for people with cancer – hospice care is for anyone with a life limiting or terminal illness, and their family and friends, the support provided is eclectic and holistic

3. That hospices are provided by Macmillan cancer – of course some hospices are provided by Macmillan but there are many independent hospices and the support provided in my local area (Devon) is not linked to Macmillan

4. That hospices are paid for by the NHS – some hospices are funded by the NHS but the vast majority rely on fundraising to cover their costs, with only a small proportion of funding from the NHS. Despite that hospice care is always free of charge.

So why am I blogging (incidentally from the highest Starbucks in Canada) and claiming it’s relevant to Hospice Care Week. Last year my Dad spent two weeks in our local hospice, Rowcroft, before returning home where we were provided with support by their fantastic Hospice at Home team that allowed him to die at home. You can read about our experience on the Rowcroft website.

Eleven months later there is rarely a day goes past when I don’t actively think of those amazing staff and the fantastic support that we were provided as a family. Since then I have heard many stories of people whose relatives had less than ideal deaths, for whom the support was not available as it was to us. Nearly every time for a short period I feel guilty when I hear one of these stories, I feel like I should hide away Dad’s and our experience for fear of rubbing people’s noses in it. Then I give myself a talking to and usually return to the same point, that we were incredibly fortunate to have such an empowering experience of hospice care, and that is important for people to hear. I also think I have a responsibility to ensure that people understand that hospices are about life not death, and that they need our support to raise awareness and cash, so that even more people can share the experience that we did.

Dad was ill for five years with cholangiocarcinoma before he died. His health fluctuated wildly throughout that time and we all developed our own coping strategies. I had many, but the hardest thing I found was balancing work and family. I travelled a lot for work and it got to the point where I always drove to the train station so that my car was waiting for me if I had for return early and get to the hospital; I would try and ensure that I wasn’t away at weekends if I’d been away in the week so I could visit my parents; when it came to holidays I agonised, knowing I was away for work if anything went wrong was always far easier than being away for my self!!

Fate seemed to play its part too, I can remember at least three weddings I travelled to in that period (two in Wales and one in Ireland) and on each occasion Dad was admitted to hospital, either with neutropenic sepsis or needing a blood transfusion. Towards the end of his life Dad’s trips to hospital became more frequent; my last function before quitting my job last year was NCASC and again I remember wandering Eastbourne promenade on the phone to Mum filling me in with the details of his latest admission and me having to try and make the call remotely about whether to leave early and return home. I didn’t, and later that week Dad was discharged home where he stayed another week or so before being admitted to the hospice.

I have done *a lot* of travelling in the last eleven months. To some extent I think I’m catching up on lost time, I’ve always loved travel and it had been missing its usual ease and carefree spirit the last few years. I still very much loved travel, don’t get my wrong, and I had one amazing holiday to the Maldives about half way through that kept me going in the dark times, remembering the sun and beaches, but nothing of travel while Dad was ill came close to the feeling of freedom and adventure I now have. Every time I walk to Newton Abbot train station, or take a work trip away, or plan a curry adventure, or manage as I have the last couple weeks to see friends in the USA and attend a brilliant conference in Canada, without worry I remember the support from Rowcroft. Not just the support while Dad was alive, or immediately after his death, but the ongoing relationship and support provided. It is ten times easier for me to travel away knowing that my Mum isn’t alone with her thoughts, that she has new friends and contacts through the Rowcroft Choir and through her volunteering at the hospice (and it also helps massively that my little sister and family have moved back to Torquay).

I too have got a lot from being able to share our experience, not just with you guys via this blog, but also with Rowcroft, who have shared our experience to raise awareness on their website and in a newsletter. Giles (the CEO), Rachel and other staff at Rowcroft have also have been very open to feedback and suggestions. It’s incredibly humbling to know that there is some small way in which we can give something back. So I hope by writing this post a handful more people will think twice about what their local hospice does, that you’ll hear that the support doesn’t stop at death, that in fact it is about so much more than that.

Hospices are about living and that’s something that’s common to all of us. I sincerely hope that you and your family never have to experience hospice care, but I also hope that if you do, the support is available to you. So check out your local hospice this Hospice Care Week and maybe see what you can do to help, give time or money or just talk about them and raise awareness amongst your family and friends, I bet they do far more than you realise.

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