I am so tired. Not very exciting I know, but true nonetheless. The new carer saga is taking its toll. Kalepo and co are lovely people but they are not the experienced carers we were promised and are therefore learning the job on the job, so to speak. The trouble is I don't have the energy to be a training aide. They are getting quicker and better but we are nearly a month in to the handover and I am afraid I lack the confidence that should a crisis occur they would know how to handle it. Although the Muscular Dystrophy has been deteriorating recently my general health has been pretty good but I'm near my coping limit regarding the home care provision. When I wake in the morning a night on the ventilator means my mouth is very dry and talking is next to impossible; issuing instructions such as, “Move my head forward and my shoulder back” and “straighten my left leg and then tilt the bed slightly,” become a challenge only slightly less daunting than a tongue-twister competition. Now throw in the added complication that English is not even Kalepo's second language but his third (after German) and the potential for miscommunication becomes significant. If I become ill, with even a minor ailment such as a cold, my clarity of speech first thing in the morning becomes even harder to understand than a premier league footballer after a night on the town. Interpreting my mumblings into a comprehensible form requires the equivalent linguistic ability of Thomas Young translating the Rosetta Stone. My worry is that if something serious is wrong inexperienced carers won't recognise it, let alone know what to do.
It has been said that any carers coming in to me will have to learn what to do, which is true. But there is a difference between learning how to cope with my specific needs and learning the basic skills such as manual handling and using a hoist. So now I feel guilty for having expressed my concerns officially. I'd hate Kalepo and the others to think I don't trust them – I do. Just not with my life.