When dementia visits a family, it is rarely recognised by the person concerned; close family and friends see the symptoms long beforehand. Those closest, make allowances and adjust to “foibles”. So, when close family make observations, it can be alarming. There might be disbelief at first until the dots are joined up and reality faced.
The realisation that a significant cognitive impairment is worsening can be scary. I remember recognising this for the first time and having to take stock of our current lifestyle and plan for an uncertain future. We were living in France and enjoying every moment but I knew there was no family nearby, support networks or anybody who knew much about dementia; the prospect was worrying. We came “home”, to the Island which meant closer to our children and familiarity; our last home for 27 years was in Gatcombe and my wife regarded the Island as her “home” even though she was the Pompey girl I first met on Hayling Island in 1963. (The best selling single that year was “She loves you.” )
We managed almost two years before she left home and I still have moments of profound sadness; I am still incensed that support is still sketchy and knowledge difficult to access and this is why I am a passionate supporter of Alzheimer Café IW. It provided me with answers and practical assistance at a time when I was in devoid of both. Sure, I have met kindness in the extreme but this has occasionally been mixed with inappropriate advice and outdated “knowledge”. Effective support demands an accurate knowledge base and an understanding of how the disease develops and especially a common language. Through the Dementia Awareness Partnership (the outreach arm of Alzheimer’s Café), we have tried to remedy this; by providing an Island-wide dementia awareness programme for all professional care workers both statutory and voluntary and working closely with Carers IW, support for carers. The NHS have co-developed a training programme for all new employees, all Age UK IW workers have attended courses and the IWC have commissioned us to work with all CQC Registered residential homes and domiciliary organisations.
I’m proud to be a part of this, because I know from experience what it is like to accompany a person you loved for the duration of their journey. We only just made our 52nd wedding anniversary but who’s counting? We had a lot of fun, two children, we travelled, met lots of very interesting people and lived in a cottage with roses over the door.
Whilst there is still a long way to go before we reach an adequate system of care, that journey has begun. I want to own a share of this movement, to give the last few years a purpose and continue to be proud of being an Islander.