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Simon and Florence
David was born with a rare and unpredictable chromosome defect, which results in severe physical handicaps, double incontinence and learning difficulties. For myself and my wife Florence*, as David's parents, initially the impact was devastating. Paul, David's older brother, was only 4 when David was born. Both of our extended families were unable to help as they live hundreds of miles away. We realised that there was a need not only for respite for ourselves, but to somehow spend time and give attention to Paul who was also seriously affected by the differences and restrictions thrust upon the family in comparison to those of his friends.
Although good but limited support from the Health Visitor and Social Services Home Care was provided, we needed someone to take on the caring of David to give time to Paul and later for Cathy who was born two years after David.
We were put in touch with Hillingdon Crossroads scheme. The regional representative met the whole family together with the local Scheme Manager and they explained how Crossroads could help. Two Carer Support Workers worked with us to assess how support could best be provided. After a short time a trusting relationship was built up - which gave us the confidence to leave David with the Crossroads staff.
Initially respite was provided so that me, Florence and Paul could go to school events and parents’ evenings. The Carer Support Workers and the Scheme Manager said that Crossroads could help not just with what we thought was essential cover but to give some leisure time for the family. So with encouragement by Crossroads we felt able to relax and enjoy social events such as my firm’s Christmas dance and an evening at the theatre - safe in the knowledge that David and the family were well cared for.
Looking back, it was Crossroads support that helped the family deal with the grief that we felt at this stage and to give some normality to our lives.
When we moved to another county, South East Buckinghamshire Crossroads scheme again helped. A change in my work meant that I occasionally had to stay away for a few days. Florence also now had work, which involved some evenings. Crossroads were able to help in supporting us from time to time - taking over the carer's role so that Florence could hold down a job.
Crossroads supported us, not just in a practical way, but they also helped the family deal with the emotional impact of caring for David. Crossroads gave us both the opportunity to work and to develop confidence in ourselves, and probably helped to keep the family together. Even now, although David is in permanent respite, we know that we could call upon Crossroads - confident that David would be given the highest quality and very full care in exactly the same way that they he has been in the past.
*Names have been changed
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