What do you think of when you see the word ‘hospice’? Somewhere people go to die? Somewhere for a carer to leave a sick or disabled relative while they take a break? Or somewhere the whole family can go for a bike ride, play in the snow, watch a movie and then relax in the Jacuzzi together? Neither did I.
But this weekend we – the whole family – are on our second short break to Rachel House in Kinross, run by Children’s Hospice Association Scotland (CHAS). Like many parents, when we got the message that we had been accepted for hospice care, we were in two minds. The first thought being, “Brilliant, we’re going to get a break at last” (although quite what kind of a break I had no idea); the second, “Hang on a minute, a hospice? Shit, Benjy must be really really sick.”
Of course, a children’s hospice isn’t like an adult hospice, and probably an adult hospice isn’t at all like what I imagine. Yes, there are some very sick children there and yes, there are some very tired parents there too. But it doesn’t feel grim and depressing, not for one second. It feels, well, not really like anywhere I’ve ever been before. A bit like a nice hotel … but friendlier. Certainly nothing like a hospital (I think this is aided by the fact that the staff wear ordinary clothes rather than uniforms and often you can’t tell who is staff, who’s a volunteer, and who just family). Perhaps most like a ski lodge or an outdoor activity centre, sited on the edge of a loch, with big glass windows and a big warming fire in the middle of the lounge. A place for a bit of a holiday (without all the worries about medical equipment, feeding supplies, wheelchair access or travel insurance), and a place to feel at home (without all the treatments and therapies, cooking and washing, and getting up in the night).
Back in January, on our first tentative visit, my priorities were, firstly, to give Jackie some proper attention from both parents (usually even if both of us are around we tend to split the family down the middle with one of us looking after Benjamin and the other being with Jackie); secondly, to spend some time with my husband away from the chores and the paperwork and the caring for Benjamin; and thirdly to sneak in some sleep whilst someone else did the night shift.
One thing I hadn’t envisaged was that the weekend would also be a fantastic break for Benjamin himself. So while Ric and I were teaching Jackie to ride her Christmas bike, playing hide-and-seek in the snow, and gorging on cake in a nearby coffee-shop, Benjy not only got all his feeds, medicines, nappies and baths attended to, he got cuddles, foot rubs, finger painting, soft play, time in the snoezelen (which I’d never heard of but turns out to be a kind of sensory room with all sorts of lights and sounds and tactile thingumajigs – although I did hear Benjy sneaked in a little snoozing while he was there), walks in the buggy, sensory toys, time with a i-pad, and a bit of time watching Harry Potter (which he seemed to love).
I found it hard to switch off completely – I did have to phone up at lunchtime to check that Benjy was okay (I was told he was ‘delightful’). And the first night, being used to having him close and his monitor closer, I crept down to his room a few times just to check he was still there – and found no-one was offended at this but each time offered me a cup of tea and a chat. Of course Benjamin slept far better than he does at home anyway – exhausted from all his activities.
This time we all know what to expect, and we can’t wait! Jackie is looking forward to riding on a child-size tractor wearing an Elsa dress whilst simultaneously watching as much Peppa Pig as she can, doing finger-painting and getting away with everything thanks to her blonde hair and cheeky grin. Benjy doesn’t know what’s in store for him but I bet you he’ll break into his best beaming smile the moment he realises where he is. For Caitlin, of course, this will be her first visit, but I reckon she’ll be inundated with cuddles from the moment we arrive.
I don’t know what hubby’s looking forward to but if it’s anything like me it will be some time with the girls, some time with each other and, actually, some time with Benjamin – a chance to connect with him as a son without focusing on his medical and personal care. Not to mention some home-cooked meals we don’t have to cook, a couple of less-interrupted night’s sleep (I would say uninterrupted but with Jackie and Caitlin on board that would be hopelessly overoptimistic!) and endless supplies of tea, biscuits and cake. We know now that Rachel House is a place we can recharge both our batteries and our relationships. The support CHAS provides to families under pressure really is unique, invaluable, and second-to-none.
In future I might even be brave enough to leave Benjamin at Rachel House for a few days so that we can take the girls away somewhere that might be difficult with a wheelchair or medical supplies, safe in the knowledge that he’ll not only be cared-for but educated, entertained, and loved. In the meantime, I’m very happy to sit around the fire and eat cake.
CHAS has been providing support to terminally ill and life-limited children and their families for twenty years this year. Their hospices, Rachel House and Robin House, are the only children’s hospices in Scotland. To support their work please go to https://donate.chas.org.uk/ or text CHAS10, followed by a donation amount, to 70070. Thank you.