I feel very lucky to have such a wonderful job with an amazing group of people. As a nurse I am a specific contact for some of the children and families. I get to know these families particularly well and support that family on their whole journey with us; during times of respite at the hospice, when they are at home, if they have problem with things like medication or feeding, and during end of life care and through to bereavement. My aim is to be someone who the child is happy to be looked after by, who the parents feel they can trust and talk to, and be able to offer the family as a whole support when times are tough.
The best part of my job is being able to make the children’s stay with us magical. I have planned animal themed birthday parties, pyjama parties, trips to pop concerts, even a royal visit! To help families make special memories is a huge part of my role. I really enjoy being able to support the parents, sometimes just taking the time to chat over a cuppa makes all the difference to them, and it reminds me of what challenges these families face and how amazing they all are. It is humbling.
Caring for a child is such a privilege as it requires a lot of time to build up that trust.
The hardest part of my job is giving end of life and bereavement care to the children and families. This is hardest time imaginable in their lives and we can only offer support. It’s impossible to not be affected by looking after a child who is dying. My role is to make them as comfortable as possible, we listen to what the child and family want and respect it completely. Being able to offer that service at the hospice, as opposed to being at home or in a hospital, is invaluable to those families. There are times when I am, quite simply, at a loss for words. I have seen unbelievable dignity and bravery from both the children and the families and it is something I will never forget. It is indescribably sad but the fact we are here to give support to the child and family as a whole, and that we can make such a difference at such a painful time, is the most rewarding thing I have ever been a part of.
For a family to have people there to help look after their other children, to always have someone there to take care of their dying child, to have someone around to talk to at all times, to simply have people doing things like cooking and washing, just makes life that little bit easier.
We are there to help plan the funeral, register the death of their child; things that can seem so overwhelming while they are trying to come to terms with the death. By doing this, we allow the families time to just be with their child, in our special Starborn room. We keep in contact with those families for as long as they need us to, to continue offering support to them.