This morning I am up early while OH is still asleep after being up and down all night, anxious and fearful, calling me MAW, needing a cuddle, a drink of warm milk and tucked back into bed. I am thinking how small my world has become. No more being an influential person in my community. My 'political' involvement reduced to posting on facebook and sending apologies for meetings. My new hobbies comprise knitting, feeding the birds in the garden and playing mindless computer games. The knitting and computer games are both frustrating as OH constantly interrupts, needing something at a crucial moment, which requires full attention.I hate this job - I wish I could resign - but it does not work like that, does it? He can't understand, because he doesn't even think he has dementia.
I feel for each and every one of us one here -what are we supposed to do, it's like a curse dropped on us that we can do nothing about...
If this were a proper job it would require 4 carers doing 8 hour shifts - Day Shift 7 till 3, Backshift 3 till 11, Nightshift 11 to 7, with one 'spare' to cover for holidays, illnesses, time off in lieu, etc. All 4 carers in the team would be highly skilled, fully trained and have CHOSEN this job - unlike us, a motley crew of people, highly skilled and trained, but NOT for this particular Job which has been thrust upon us. Even the paid carers do not do the full job, having no responsibility for managing the financial and legal aspects of the role.
It is like being marooned on a small island, not alone but with a person who needs round the clock attention, for their complex needs and unable to help (rather hinders) with the hunter gatherer tasks. Thankfully, this small Island has internet connection with all the other small islands and this is our life line for help and support.