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God (aka my consultant) has spoken. Permanent lifestyle change is now upon us. I have suffered a terrible toll both physically – I bear the ravages - and aesthetically – my home bears the scars! We need to plan for a future where I am re-enabled and our home is transformed from ugly duckling to swan. First, a recap: I have now welcomed into my life:
- the semi-permanent residence of my father – I reached a point where I could not be left alone in the house. EaZyD needed to work for his own sanity…and mine. Carers are quite astoundingly expensive so my retired father came to stay from Mondays to Fridays to be with me and ease the pressure on EaZyD in the short-term, until we could make better plans.
- carers – I pay for carers to come in at lunchtime and early evening to help with my personal stuff. I get up and dressed with EaZyD. As for the carers…oh…mi….god! Horror show!
- a mobile hoist – Initially, I was horrified at being lifted by hoist but, very quickly, it was a relief. The real horror was at the loss of my independence. Once I realised this, I accepted the hoist as a ‘friend’!
- a built-in ramp – a vain attempt to overcome the steps to the bathroom problem. Not really a success and soon replaced by the stair-lift.
- a stair-lift – I refused to be confined. We put in a second-hand stair-lift – beige(!), unbelievably expensive and it totally wrecked our carpets, walls and home aesthetic! Not an ideal solution for us because of our narrow staircase and mezzanine floors – necessitating a door break where I had to be transferred but, hey, at least I could get out at weekends.
None of this has been smooth or easy in time, effort or money. So far, every adaptation has made our lives easier but, overall, the quality of our lives – for me, EaZyD and my parents - remains poor by comparison to pre-illness days. We had hung on – encouraged by Consultant God – hoping for recovery. No longer! We shifted to the plan of life with no recovery but still with style, ease and high quality albeit with physical disability and wheelchair. Wish us luck.
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