Note: This blog piece has been submitted by Jean Davis, an SHA employee. Jean is one of those working really hard behind the scenes and an absolute credit to the organisation. here she talks about her experience working with the HD community.
22 years and counting…
How proud am I to work for an organisation which is so hardworking and dedicated to their cause. That’s probably why I’ve stayed with the SHA for over 22 years! My background has always been in administration, working for a variety of firms throughout the country e.g. Metal Box Co in London, Tarmac Construction in Devon etc etc. I was fortunate to be offered an admin post with the SHA shortly after I moved to Scotland in 1994, when the Fife service was just commencing. The HD clients and families I have met through the years have been an inspiration to me. I’m sure these contacts have made me more understanding and aware of disabilities in general and the care needed to support those affected. Raising awareness of HD is vital and I know staff are working hard in this direction.
I have today typed up the casenotes for a client in Fife who is in mid-late stage HD. He is divorced with three children but has no contact with any of them. His only sister, who also has HD but used to visit, has now been taken into care and is no longer seeing her brother. He also has no friends. How sad that this relatively still young man has no family or friends in his life to support him through his deteriorating symptoms. Withdrawal from being involved with someone with HD is unfortunately a common occurrence and although I very much appreciate how hard it is seeing someone you care about changing both physically and mentally, it must be devastating for that person to have no-one from their past to be there for them.
I remember this same client from about 20 years ago when he turned up one day in our office. He was at that time being supported by his wife. Now he has no-one although professional carers, organised by his HD Specialist, assist him every day. These carers are great with him, they take him out socially and it is mainly through their assistance that he has not been taken into care. His HD Specialist also sees him very regularly to ensure he maintains the best quality of life possible. Through her guidance and assistance, he now has a lovely flat, he is kept clean and well nourished, his finances are in good order and generally he seems happy. It is also hoped that visits to/from his sister in care can be arranged. It just made me wonder how much more empty and lonely his life would have been without the SHA.