Mummy and Daddy were very reluctant at first to accept Hospice Care. Partly I guess because they didn’t want to accept I was as ill as I was, but also because they were a bit scared about what Hospice care might actually entail. I think they worried it might be a sad place.
However, we came to love our time spent at the Hospice, and these initial fears couldn’t have been further from the truth.
All areas of the UK are covered by Childrens Hospice care, although depending on where you live, some may be close by or others a little further away. Each Hospice will differ in how it functions and what it offers, but in this section I will tell you all about the care that we received at Charlton Farm which is part of Children’s Hospice South West. Hopefully it will give you an insight into how a hospice may be able to help you, and will encourage you to not ‘put off’ going.
I loved my time at Charlton Farm. As the name suggests, it has been built by converting farm buildings and barns, and is surrounded by fields and woodland. It is in a lovely location, it is secluded and is perfect for respite care, despite only being a short drive away from Bristol.
The Hospice provides one on one care for up to 8 children at a time. Whenever we arrived at the Hospice there would be a member of staff waiting for me, and they would take care of not just me, but also Mummy and Daddy.
There are 2 main floors. Downstairs, where you will find a corridor with 8 rooms for the children being looked after, and a staff area for the staff looking after them. There are also play rooms, sensory rooms, a small pool, a music room, a soft play room, an arts and crafts centre as well as a teen zone. There is a communal dining area and living room, as well as a relaxing conservatory and outside gardens and further play areas.
Upstairs is for the families. Mummy and Daddy would sleep in their own room upstairs. It was a lovely room, and even had a balcony where they could sit outside and chat (if it was warm enough)!! All upstairs bedrooms have adjoining rooms, so siblings can come too.
Why hospice care?
You might wonder why we would need hospice care when I am just a baby? Emotionally, my parents were pretty drained. It was hard for them coming to terms with my illness and knowing that they would lose me. At times they were functioning on ‘empty’, and what they needed was to be able to recharge their batteries once in a while to enable them to face the next challenges that would head their way.
Also, as I was so poorly, and not feeding very well, it was impossible for anyone else to feed me or look after me. What if something had happened when I was in someone else’s care? This meant there was no break, they weren’t able to go away really in case something happened, and they couldn’t stay at friends houses. The only chance my parents had to rest was when they went to the Hospice. They would have lovely sleeps knowing that I was in safe hands downstairs.
My room was lovely. There was always a felt board there greeting me when I arrived with ‘Hi Cerys’. My moses basket would be placed in a lovely tall cot bed, and there would lots of soft toys and books surrounding me. The staff would take down details of my daily routine from Mummy and Daddy, i.e. my feeding patterns, what milk I was taking, what quantity, what time was bath time, as well as notes on any activities they would like me to do, such as having a swim or going in the sensory room.
The staff used to fight over who got to look after me on each shift, they knew I liked cuddles, and they all liked cuddling me
Care for the whole family
Mummy and Daddy spent most of their time with me when they were at the Hospice, but occasionally they did go out. Mummy went once to have her hair done, and a few times they also went out for dinner.
The Hospice took good care of them too. Meals are provided at the hospice, so families can have a break from daily chores completely, and members of staff were always making cups of tea, and getting them to eat cake (I wish I could have had some, it looked yummy!!).
Some of the older kids would go out for the day, and there were always activities planned for the siblings who were staying there.
My parents got to meet other families whist they were staying there, and made friends. It made them feel that they were not alone.
Members of my family would sometimes pop in to see me. My Cousins all came on one day, and they loved the place so much they asked if they could come back for a Holiday!!
The staff were amazing. They really tried to help Mummy and Daddy find a solution to my feeding problems. Even on their days off, they would be hunting down bottles for me, and would pop in to help us try something new. Nothing was too much trouble.
When we weren’t staying there they would call my Mummy regularly to check and see how they were doing, and if they had any concerns or queries. They were always on the end of the phone day or night if we needed them.
When it was clear that I was reaching the end of my life, my parents took me to the hospice. The staff took such good care of me. I was well looked after and surrounded by as much love and friendly faces as I could have wished for.
After I had died, I remained at the Hospice for over a week, and my parents had as much access to me as they wanted. It meant they were able to say goodbye to me in their own time, and I think it helped them cope in those early few days. My grandparents from Wales were able to come down and stay too whilst I was there, and the staff helped my parents with some of the funeral arrangements and dealt with calls that needed to be made. My parents felt protected at the Hospice, and were surrounded by people who understood, and who just allowed them to be however they were on each specific day.
Contact with the hospice is on-going. The staff continue to call my parents to see how they are doing, and my parents have even been back twice and popped in to see the staff. I think they miss going there!! My parents have also attended a remembering weekend which was held at the hospice, and in time will join Star Mums and Star Dads (which are groups set up for parents who have also lost children), people with whom they can share memories with, and also who will understand.
I hope this has given you an insight into how a hospice can help. There are no shadows cast across them. They are places of wonder and happiness, filled with children and parents alike all of whom are truly inspirational. I am part of the fabric and history now of Charlton Farm and always will be. I was happy here and I was loved.
NB. Please click the following link if you would like to see more about Children’s Hospice South West and Charlton Farm.