The idea of having the nurse and carers in was to hand over the majority of the toileting, bathroom and heavy handling - how is that working? Well in terms of the washing and daily handling, carers 5% - me 95%, toileting - nurse 5%, me 95%. Is this working in my favour???????
The majority of the time so far is working fairly well, Mark is frustrated because he doesn't have a car yet so sometimes feels like a prisoner, I'm too knackered to worry about going anywhere other than getting supplies. It's not a bed of roses though, sometimes things pull us up short and slap us in the face at the enormity of the hill to climb yet. And sometimes things happen that make us feel just sad at the lack of control Mark has over his life just now ... one example ... I have mentioned a few times the problem of his legs retaining fluid through the day and that he can often go all day without passing anything, and overnight he can pee up to 3 litres. I have to check him at least twice through the night to empty his night bag so he can keep filling it up. Night before last his convene came off, on the very night I actually slept 5 hours so I'll leave it to your imagination what a mess I got up to. The mess is one thing, the emotional roller coaster we go through is quite another.
Got a letter this morning from the hospital for his 6 week check up. On it is a telephone number to ring if it needs to be changed or cancelled, under the number is the following message ... 'calls are charged at 5p per minute from land lines'. Where will it end!!
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