Dementia has ruled my life since 2010 when mum concerned about sudden blanks moments self-referred to her GP. In hindsight the signs had probably been there for a couple of years but as I lived at some distance I did not put the pieces together at the time. Guilt. It looms large over all families, the ‘if only’.
With no siblings mum’s fairly rapid deterioration forced me into decisions that had not entered my thought process only months previously. I gave up travelling, the trans-Africa expedition postponed (now cancelled, although I still have the maps!) and moved into mum’s apartment overlooking the wooded part of a golf course. The selfish me frowned at the prospect of returning to the family home after forty years of independence and of returning to a noisy crowded part of the UK – a far cry from the wilds of the Northumbrian fells and coast and the Ariege (midi-Pyrenees), where my heart belonged in so many ways.
Heartbroken at my loss, at what I had walked away from, it took me time to appreciate that it was not ‘my tragedy’. I was not the ‘victim’. Well, we can argue that another time … I threw myself into mum’s care with a vigour that occasionally lacked direction but never purpose. I will not dwell on the endless battles with NHS/Social Services/Day Care/Residential Care – you have probably been there. These battles continue to this day with two hours of mum’s 1:1 care being removed by the NHS with absolutely no reference to me. I have learnt to choose my battles but …
When the time came for residential care – a heart-breaking, miserable, cold and wet November day – I sold mum’s apartment to pay the fees (something in excess of £50,000/year) which of course made me homeless. So began eighteen months living in my twenty-five year old motorhome. It had been comfortable for travelling around the UK in summer and warmer climes in winter – definitely not designed for the English winter or a boatyard without facilities. At least out in the Thames marshes I was back to nature.