Supporting Siblings of Terminally Ill Children

Beth is 7 years old, and lives with her mum and her little brother, who has very complex care needs and whilst Beth loves John dearly, she also has times when she really wishes she did not have a brother, any brother but especially a poorly brother. 

Beth’s family was introduced to Rainbow Trust by John’s community nurses, who recognised that Beth’s mum was clearly finding it hard to balance her time between Beth and her very ill son.

Beth’s mum was very open with the Rainbow manager and said she was at a loss at how to cope with a very sick child who needed her constant attention and all the visitors who came to see him, and to find time to be with Beth. 

Mum gave examples of Beth coming home from school, bursting to tell her about her day at school only to find herself saying I am busy with your brother, but once I have fed him we will talk about it, only to find as soon as she sat down with her daughter the door bell would go and it would be the occupational therapist calling to discuss the new hoist; then the visual impairment worker; then her son would have a large epileptic seizure, and Beth would go to bed not having been able to share her special news from school. 

Mum had noticed that Beth was slowly changing into a sullen and withdrawn little girl.  

Various possible options of support were discussed with mum, whether our worker would support the brother, so mum could spend more time with Beth or whether the worker would become Beth’s special person and spend time with her.  As well as being there for mum.   Mum decided that a special person just for Beth was the answer.  How right she was. 

Our support worker was introduced to the family and was in the family home when Beth came home from school.  She had arrived earlier to get to know mum and her son, and had in fact read to the sick boy, so mum could prepare his feeds and also have a soak in the bath – a very rare treat.    So when Beth came in mum did have time to listen to what had happened at school, and then introduced the worker to Beth, Beth was delighted to hear that someone had come into the family home for her not her brother!

Our worker has become a life line for the family, she regularly collects Beth from school and they have “adventures” together visiting local libraries, something Beth pointed out she could not do with her brother, as he makes too much noise!  So her homework is now always handed in on time, trips to the pet corner at the local garden centre, again something Beth cannot do with her brother, as he is highly allergic to pet hairs!    

When her brother had to go into hospital for planned surgery, our worker, with mum’s full permission, was able to explain what was going to happen.  Beth took this in her stride, and decided having to stay with her grumpy Aunt would be alright for the three days as our worker would take her to and from school each day and to visit mum and brother in the hospital. 

Beth has become a much happier little girl.  Mum is more relaxed knowing her daughter has an outlet for her energy and worries she did not have before, and that she has a “professional friend” there for her as well, just don’t tell Beth though!                     

Links:

• http://www.rainbowtrust.org.uk