Supporting Siblings of Terminally Ill Children

Dominic and Sarah live with their mother and sick brother Bradley.  Their father does not have any contact with the family.  The maternal grandparents’ live about 10 minutes drive from the family home and Granny is very supportive to the family, however her husband, the children’s grandfather, has a form of dementia, so at times it is difficult for her to help her daughter as she has to care for her husband.

Dominic is 7 and attends the local primary school and Sarah is 3, she attends a local preschool for a few sessions a week.  Bradley is 5 and has a serious cancer affecting the nerve cells.

Rainbow Trust's Support

The family were referred to Rainbow Trust by the CLIC Sargent social worker at the treating hospital, which is about 40 miles from the family home.  Mum is a very independent lady who takes pride in being a good mum, especially after the difficult break up of her marriage.  As Bradley was having to be admitted to hospital for a long period of treatment, that was going to make him very ill, the social worker and mum identified that there would be a need for some extra help with Dominic and Sarah during this time.  Mum was reluctant to accept help from social services, as she feared that she would lose control of her children, but she felt having heard about Rainbow Trust that we may be the right sort of support for her and her family.

A Family Support Worker was introduced to the family, and they very quickly built a great rapport.  Dominic and Sarah really enjoyed the company of our worker, playing games, dressing up, messy play, trips to the park etc., having been slightly “pushed out of things” as Mum put it.  Granny was a little apprehensive at first, and explained that she felt she should be able to support her daughter.  The worker carefully explained that she was there to help everyone and certainly not to take her place!  But maybe there were times when Granny would welcome some help with the grandchildren.  Granny soon warmed to the worker too!

Bradley sadly became very unwell as a result of the treatment and became very clingy to his mum, who had to stay with him in hospital.  Granny had become “mum” to Dominic and Sarah.  Dominic and Sarah moved in with Granny, who soon realised the difficulties of getting a 7 year old to school and having a 3 year old at home with her for most of the day, as well as caring for her husband.  This was when our worker worked in partnership with Granny, our worker taking the children to school or preschool so Granny had time to get her husband up in the morning.  Taking the children to visit mum and brother in hospital, again giving Granny time for herself to “recharge her batteries” to care for Dominic and Sarah again, however after a busy time out with the Rainbow worker the children were usually ready for bed.  The children shared their concerns with their Rainbow worker, who helped them understand why mum could not be there and the children were not in their own home.  Our worker took the children to spend time in their own home, to change toys and play in their garden.  Our worker also developed a good relationship with Bradley, so at times Bradley would let our worker stay with him, so Mum could spend time at home with Dominic and Sarah.

Bradley is now doing well and at home with his mum, Dominic and Sarah.

Our worker still visits the family and supports in many different ways, for example listening to mum’s concerns about a possible relapse for Bradley,.  Our Family Support Worker stills cares for Dominic and Sarah when mum has to take Bradley to hospital for checkups with Granny’s blessing!

Outcomes as a result of Rainbow Trust’s support

• Increased support for the siblings during their brothers illness
• Better understanding of their brothers illness
• An increased range of play and fun for Dominic and Sarah
• Improved attendance for Sarah at preschool
• More opportunities for Dominic and Sarah to access local leisure services
• Increase in opportunities for the siblings to spend time in their own home
• Increase in opportunities for Dominic and Sarah to see their brother when in hospital
• Increased quality time for Dominic and Sarah to spend with their mum and a greater understanding of why she was not always at home
• Reduction of stress in the family for the mum and the siblings.