Many families are already ‘bereaved’ when they walk through our door. They are in shock and grieving for the loss of all the milestones of parenthood.
The joy of being a Julia’s House nurse is that we can be a positive influence by bringing comfort and some feeling of control back for those mums and dads.
We can help them make the very best of the time they have together and support them through the difficult times that might be ahead.
Many people do not realise the level of stress these families are under. We’ll have a child at the hospice for six hours on a busy care session, feeding, playing, administering medication, monitoring. Imagine having to provide that intense level of care all the time, round the clock, day in, day out. It’s no wonder families reach breaking point without the right support.
Julia’s House is part of a massive puzzle for a family with a life-limited child. We are not the whole story but we are an important piece.
We want to work with families to create a clear pathway for them, from the first phone call to the end of a child’s time with us – a supportive network of familiar, friendly faces that really understand who they are and what they need.
Once families realise how much support we can offer in so many ways there is a real sense of relief on their faces. Getting an early referral for families is really important, educating hospitals so that they know where we fit in and what we can do.
We can offer respite to children in hospital, at our hospice, or – and this is our biggest selling point – at home. Families really appreciate having care brought to their doorstep.
The Julia’s House care team is an amazing blend of experience in all areas of nursing and childcare. Like many, I started out as a paediatric nurse in a hospital, for 10 years specialising in oncology – looking after children with cancer.
Back in those days we never thought about hospices, they weren’t an option. If a child died on a ward they would be sent to the hospital mortuary and at that point the care ended. You might have treated the child and got to know the family a little but there was no further contact after death.
I enjoyed my job but didn’t like not knowing how bereaved families were coping once they left my care. I took a career break to have children of my own but I missed nursing. I joined Julia’s House because the whole family relationship building as part of the nursing really appealed to me.
End of life nursing has similarities with being a midwife. Birth and death are two massive life-changing events. Both involve enormous pain and you just want to make it more bearable.
Being able to give mums and dads choices is part of that, whether they want their child to stay in hospital, be at home or come to the hospice, we can be there. It is so lovely to be able to follow through, help that family to the funeral and beyond.
Families of life-limited children are constantly prepared for death. Their children are often in and out of hospital and every time parents are ready for the worst. This constant emotional cycle is so exhausting. The end is always a shock no matter how prepared families may seem.
We are not there to counsel but to support – practically and emotionally - for up to three years if they need us, helping them to pick up the pieces and move forward.
Grief comes in waves. Some families feel incredibly connected to Julia’s House for a long time and want to keep visiting, especially at key moments from their child’s life. Others need to move on.
Nurses and carers make up a memory box for every bereaved family. Foot and handprints of the child, little treasured objects that sum up the wealth of happy times we have all shared. Every family knows we are just a phone call away now and in the years to come.