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Respite Care: What is It, Why is It Important, and How Does It Benefit Life-Limited Children & Families?

When we think of hospice care, we may think of a lot of things; perhaps nothing at all.

But one thing that doesn’t come to mind is children. Because for most of us, the concept of seriously ill children is too difficult to discuss; too painful to picture. We prefer hospices to exist in the background, rather than speaking about – or advocating for – what they do.

And what we also don’t think of are the families. The brothers, sisters, mothers, fathers and grandparents – the loved ones of children with life-limiting illnesses such as Duchene Muscular Dystrophy, cystic fibrosis or cancer diagnoses. How do they cope? How do they manage to go on, every day, in the face of such insurmountable difficulty?

It’s hard – but it’s something our respite care team can help alleviate. To help shoulder some of the weight of responsibility those families carry around, and – however small – make their everyday lives that little bit more manageable.

So this year, help us place Children’s Hospice Week – which runs from June 20th to June 26th 2022 – at the forefront of the conversation. Join us in talking about the care and support hospices like ellenor provide for children with life-limiting illnesses – and the reassurance and relief that our respite care service provides their families.

So what is respite care, exactly?

At its heart, it’s facilitating short breaks for the parents (and carers) of children with life-limiting illnesses. By taking the kids for a short while, our respite care team supports the families – giving them those minutes and hours so vital to their mental, physical, and emotional health.

But when you’re caring for a child with a life-limiting illness – which is almost always a full-time job – those brief breaks are even more important. Not only for rest and recuperation, but for the everyday chores the rest of us take for granted: nipping out to do the shopping or dropping one of the other kids off at school.

Children with serious illnesses usually require round-the-clock support. Parents not only have to make sacrifices, but develop new skills, routines, and specialised knowledge. Inevitably, there’s little time for anything else.

Yet, though a child with a life-limiting illness can fill a parent’s whole world, things around them continue. Siblings, for instance, still require love and attention – to be fed, played with, listened to, and put to bed.

Against this intense, highly charged backdrop of a new kind of daily life – and a vastly altered home environment – respite care is powerful tool. A deft, dynamic blend of clinical care and play that relieves the pressure on families with seriously ill children.

Because respite care can be fun. Alongside catering to the child’s clinical requirements, our respite care team are there to help them enjoy themselves; to make special memories and get creative.

While the families grab a much-needed moment of rest, the children paint, make music, get involved with arts and crafts, and explore sensory items. If a child is feeling active, on the other hand, a trip outside might be on the cards. If they’re having a bad day, they can stretch out on the sofa –­ in front of their favourite film.

And respite care isn’t solely for the patients themselves. Respite care is also for keeping the brothers and sisters of a life-limited patient busy – perhaps while that child is in hospital with their parents. The team can take the siblings out on an excursion into the community (farms, shopping centres, and parks are all popular destinations) or relax with games and fun activities at home.

Since 90% of the care we provide is from the homes of our patients within the Dartford, Gravesham, and Swanley communities, our staff spend a lot of time there. We’re trusted with their children, in their houses – so building strong, trusting relationships is essential.

For many of the families we provide respite care for, we’ve been supporting them over the course of many years. We’ve seen them go through school: often nursery, primary, and secondary.

Given the closeness of their bonds to the families, our respite care team can even assist a child to transition from our children’s services (available until the age of 17) to adult care. By helping ease these young adults into a new care environment, we take away much of the fear and uncertainty the patient (and their family) might feel.

Ultimately, though, the respite care team’s main goal – be it for the life-limited child or their family – is to ensure quality of life. To allow everyone – be they a bedbound child, or parents lacking time for self-care or shopping – to live as normal a life that, in the circumstances, may be possible. And to help children with life-limiting conditions make the most of the time they have in front of them.

That could be listening to Disney songs, splashing bright paints over a canvas from the comfort of their own living room, or visiting a farm to fawn over the animals.

Colour. Life. Happiness. These are just some of the things our respite care team – and children’s hospices at large – give back to patients, carers, and families.

So, this Children’s Hospice Week, join us. As we celebrate them.