Rob was a patient of the hospice for five years, receiving support that enabled him to live at home and stay out of hospital. When he was diagnosed with MND he was told he might only live 2 to 5 years, but he lived for seven and a half. This was undoubtedly because not only did he have a very strong will to live, but he also had very high quality care at home that kept him happy, comfortable and free from infection. Despite acute respiratory failure, diabetes, total paralysis and difficulty swallowing, he maintained a great sense of humour, a twinkle in his eye and zest for life that some people would find hard to understand given his degree of suffering. He hated hospitals and all he wanted was to be at home with his family and friends.
Isabel played a big part in this. Dr Amsler, the hospice's palliative consultant, visited him at home every few months, building a long lasting relationship of trust and reassurance. Her invaluable experience in managing complex medical conditions meant that she was able to adjust his drug regime to control multiple symptoms that were constantly changing as his disease progressed. He trusted her absolutely and looked forward to her visits.This continuity of care was absolutely vital to the stability of his health and his mental wellbeing. In addition, he was supported throughout this period by fortnightly visits from the Hospice at Home nurse, Linda Lotcho. Linda became a treasured friend, as well as providing welcome respite periods for Sue (his wife). Her nursing skills gave Rob comfort and reassurance. She was able to make him comfortable and relaxed in his day chair (no easy task), keeping a close eye on his hydration and general health, whilst massaging his feet and having meaningful chats about life in general.
In the early days of the disease Rob travelled to the National Neurological Hospital in London but as he became more immobile this journey became too much and the Hospice stepped in to offer support at home. Without this, his wife Sue says that undoubtedly his precious life would have been much shorter. The Hospice was able to work closely with his Community Matron Liz Richardson, and his GP, to ensure that all parties were working together and kept fully informed of all changes in his condition. He also attended Day Hospice for a while, the water colour paintings that he made now have pride of place on the walls at home. This was a skill that had not been re-visited since his school days and which gave him a great sense of satisfaction and achievement.
When it came to the end of his life, he was able to die peacefully at home, with dignity as was his wish, fully supported by the Hospice, meaning that he and his family were not alone at this difficult time and that he was pain free and comfortable.