Jack and Jill nurse manager: 'You empower parents to find their voice, to advocate for their child'

Jack and Jill provides in-home nursing care and respite support to families caring for children, aged zero to six, with severe learning disability and complex medical needs. Typically, children may be tube-fed, oxygen-dependent, have sleep difficulties, suffer seizures, be heavily medicated and require around-the-clock care.

Another key Jack and Jill service is end-of-life-care for children up to age six, regardless of diagnosis, thereby empowering parents to take their child home to die.

“Sitting with those who are dying is equally as important as curing people,” says Eilín, who has a master’s degree in palliative and complex care for children from Coventry University. “It’s a wonderful gift to give people a good death, a pain-free death."

Whether working with a family whose child has severe cognitive impairment and huge needs but otherwise is well, or with children who are “frequent fliers” into hospital (“I’ve lots of families where the child’s really unwell”), Eilín finds herself supporting in all sorts of ways. “I advocate for them, listen to them — try to empower them to take on this hard road. We also put respite hours in their home.”

The week before our chat, children from three of the families Eilín supports were in hospital: “That’s just the way it is, this unpredictability in families’ lives. It’s hard for them to make plans. It impacts on siblings. Parents have promised to go to the beach today but they can’t because Johnny’s sick. It brings challenges and stress to the house — parents are torn.”

The day I call her, she has messaged two West Cork families, prior to visiting them next day. “I’ll be gone in the morning to the Beara Peninsula, to a bereaved family and also to a family who are in crisis. And I’ll pop into another family, who are managing, to see how they’re getting on.

“This morning I was in the city, catching up with a lone parent whose child was in hospital last week. She was having a vent about the system. A lot of the families do vent about that. With me, they feel they’ve a safe space to do so, without fearing they’ll compromise whatever services they’re getting.”

At lunchtime Eilín got a call from a distressed mum, in despair about how unwell her child is, and feeling she couldn’t ask questions of health professionals. “She said ‘they all come in together and I feel under pressure, facing this entourage’. Of course this lovely mum is allowed to ask questions but she feels she has to just nod her head.

“Some families feel like this. They’ve been thrown into this whole new world — a lot of these conditions are very rare without much information about them. The health service is working in a very litigious population and feel they almost have to over-treat — ‘he might choke so we’ll put in a tube’. But how about if we don’t put in a tube? He mightn’t choke….I empower families to say ‘thank you for that information — we’ll have a think and get back to you’."

“With this mother, I recommended she ask for just the doctor on his own, along with one nurse, to be sent in — and to have her questions written down. And we went through the questions she wants answered. So you empower parents to find their voice, to advocate for their child.”

Eilín believes medics can shy away from difficult conversations around, for example, whether treating someone is actually in their best interests. “Today, everybody wants everything fixed. Medics feel they can’t say no, they have to offer something else — but just because a treatment can be offered doesn’t mean it’s the right thing to do. I really respect ‘no, I can’t do anything to cure you — but I will make sure you live as good as you can for as long as you’re going to be here’."

For Eilín, it is about picking up on the questions people ask — the conversations they’re seeking to have. And then gathering courage to have these conversations, and being very honest.

"Families are trusting you to have the conversation that the answers are hard to listen to. Say you go into a house where the child’s really unwell. The parent asks ‘do you think I should bring him to hospital?’ Knowing there’ll already have been a big conversation along the way — a lot of children we look after have life-limiting conditions — you might say ‘you can, but what are you expecting hospital to do?’"

“The parent naturally wants every opportunity for the child, but when the burden becomes greater than the benefit of the treatment, you have to ask why they’re looking for this — who are they doing it for? If it’s for the parent, we need to step back and think what does this mean for the child.”

Describing herself as having “a good gut”, Eilín says her job requires intuitiveness. “Parents might ask a question in a really subtle way, but they’re asking something they didn’t feel anyone else would answer — or it has taken them until now to ask it. One mother asked, ‘Do I have to bury him, or can I cremate him?’ We teased out why she wanted to cremate: she couldn’t bear to visit her child in a grave.”

Meeting families, she knows she’s meeting layers of grief. “Parents are grieving the loss of the healthy child they had, or were hoping to have. They’re grieving for the sick child, the milestones they won’t meet. There’s the anticipatory grief of when the child will die. And then death comes, and there’s grief again. There’s such loss in all this. It’s life-changing for parents  — they’ll never be the same, but people are very resilient…. And none of this means we go moping into a family’s home — pity’s no good to anyone…. I usually have a good old banter with families.”

Brought up in an Irish-speaking home in Ballinlough (she’s now based in Blackrock, Cork), Eilín was the only girl in a family of four siblings — which didn’t make her a tomboy! Her brothers were “big into GAA”, she was a very good swimmer. She did a lot of babysitting in her teens, found children fun to engage with — unsurprisingly, children’s nursing was her first career choice. Trained in general as well as children’s nursing, she has always worked in paediatric care.

Her “gorgeous husband”, Sean Logue, she met in London one St Patrick’s Day. “I rang him six months later, inviting him to a dress dance. We got engaged after 12 weeks and married a year to the day of our first date.”

Her three children — all born in March — are aged in their mid to late 20s. “I used to say I want spring babies — they’ll be hardy for the winter!”

Over her 40-year career in children’s nursing, Eilín has worked in London, Saudi Arabia (an 18-month stint to get together a deposit for a house), Dublin and Cork.

After spending hours with families experiencing overwhelming sadness, she decompresses on the drive home. “I try not to bring my work home. I always ring one of my colleagues and have a bit of a rant. There’s a lot of black humour — if you didn’t laugh you’d cry."

“Jack and Jill look after their nursing team very well. We’ve great peer support. We go for clinical supervision once a month.”

Some people speculate to Eilín — about her job’s tough elements — ‘you get used to it’. You don’t, she says. “Outside someone’s house, I’m saying ‘ok, I’ll just take a deep breath and go in’ — because you don’t know what’s behind any door.”

How does she survive in a job that demands vast emotional resources and so much resilience? “I know I can’t fix any of it,” says Eilín, “but I can try to make it a bit easier. I can try to lighten the load.”

• Last year, Jack and Jill supported 534 families across Ireland with in-home nursing care and respite support. Funding 2024 services will cost approximately €7.5m.
• Check out https://www.jackandjill.ie/ to find out how you can help support local Jack and Jill families in your community today.