Mean the end of child­hood’

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you get used to it you need to find an­other job.’ You need to have that car­ing at­ti­tude. If you stop car­ing you’re not do­ing it right.

“It is the most dif­fi­cult part of the job. You have to be pro­fes­sional but it does get to you.

“But when you know the fam­ily, know their wishes, it’s a lit­tle bit eas­ier. Def­i­nitely a lit­tle bit eas­ier.”

Adrian said the hard­est deaths were those that come out of the blue.

“You can see a child and, be­cause of our re­fer­ral cri­te­ria, they’re not ex­pected to live un­til 18 any­way when they come along. But it could be a sud­den death. There could be a par­ent on the phone ex­plain­ing to you and ob­vi­ously they’re up­set. Deal­ing with that is quite dif­fi­cult as well.

“There are a cou­ple of stand-out mo­ments. It’s that re­la­tion­ship you have with the dif­fer­ent fam­i­lies. Some­times you’ll build up a closer re­la­tion­ship just be­cause you’ve been work­ing with them, you’ve been al­lo­cated to work with them, and you get to know them. I think that some­times is quite dif­fi­cult.

“It’s like a fam­ily here, so when some­thing hap­pens you have peo­ple ask­ing if you’re OK.

“My man­ager is good and she’ll al­ways ask if I’m OK if I’ve had a tough cou­ple of weeks. It’s a re­ally sup­port­ive at­mos­phere.

“But when it comes to end of life, the team come to­gether re­ally well. Peo­ple just come out of the wood­work.”

And when a death does hap­pen, Adrian will take some time out to think and re­flect about it.

“It de­pends on the fam­ily’s needs,” he said. “The fam­i­lies come first so you deal with that.

“But you will go off and have a cup of tea or wan­der round or go out in the grounds to take five or 10 min­utes. But we’ve got to put that fam­ily first.

“You would be com­ing straight back in and car­ry­ing on. There’s al­ways some­thing to do.”

Staff at the hos­pice try their best to cre­ate mem­o­ries for the chil­dren they sup­port.

Whether it’s paint­ing, arts and crafts, go­ing to the cinema or play­ing on the slot ma­chines in the ar­cades at Barry Is­land beach, staff try their best not to let a child’s end-oflife care also be the end of their child­hood.

Adrian said: “I can re­mem­ber a child com­ing in for end of life who was here for a few weeks. Her par­ents had been re­ally anx­ious about com­ing here and she’d been re­ally un­well, ob­vi­ously.

“But they turned up here and 48 hours later they said, ‘We’re glad we came here. We didn’t think we’d like this.’ It was all be­cause the word ‘hos­pice’ had been men­tioned.

“You can see peo­ple re­lax as they come through the door, even though it’s go­ing to be the worst weeks or days of their life. We try and make it as homely as we can. It’s not home but we try and get it as close as we can to it.

“We’ve got a great hy­drother­apy pool. They [par­ents] think their child’s com­ing in and they won’t be able to do any­thing and they’re just go­ing to watch them die but they’ll some­times write their own sto­ries, as we al­ways say.

“I re­mem­ber one lad we got into the pool and it was amaz­ing. His fam­ily were able to get him on their laps and have nice pho­tos taken and just sit there mak­ing mem­o­ries.

“It was just amaz­ing to be able to of­fer him that.

“Whereas you think he’s just go­ing to lie in bed and won’t do a lot but I think we made his last few weeks a lot of fun. We did a lot of stuff.

“Peo­ple think it’s just about giv­ing kids medicine and they’ll feel bet­ter, but it’s not. It’s about dis­tract­ing them.”

For Adrian, one of the big­gest joys is see­ing the kids’ smil­ing faces.

“It’s the kids, just see­ing them de­vel­op­ing,” he said. “See­ing the fam­i­lies grow in con­fi­dence.

“Some par­ents will leave their kids here but it’s when you’ve got some­one who’s come along and ob­vi­ously their child is their most pre­cious pos­ses­sion and just think­ing one day, ‘I’m happy to leave them here’.

“We’ve built up that trust for them to be able to leave their child with us. We be­come like mum and dad then.

“When you’re do­ing ac­tiv­i­ties and they’re laugh­ing and smil­ing and re­act­ing to you – I just think it’s amaz­ing.”

It typ­i­cally costs more than £11,000 a day – £4.2m a year – to run the hos­pice.

For more in­for­ma­tion and to sup­port them, visit www.ty­hafan.org

ROB BROWNE

hos­pice in Sully

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