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Discussion in 'I care for a person with dementia' started by cerridwen, Apr 12, 2015.
Thank you, CeliaW, sending hugs to you, Jane xx
I hope you are feeling a bit better today and all your guilt feelings have gone. You do not have anything to feel guilty about as it is obvious you are a lovely daughter. The word 'guilty' should be deleted from your vocabulary and the word 'caring' replace it.
How sad is it that a carer can only get respite when the person they are caring for has to go into hospital. Unfortunately us carers have to fight every step of the way for what we need. Two steps forward, one step back is right. People are slowly becoming more dementia aware but unfortunately some of our professionals have not.
We were lucky with our Dad as his GP's mother had dementia so he was always ready to help as he understood.
We had a Community Matron who had been on a one day dementia awareness course and Dad was her first dementia patient. She thought the course was good but didn't prepare her for dementia in the real world. She said she had learnt more from her involvement with us and Dad.
We had a SW who insisted Dad answer his own questions. His answer..."I don't know, you'd better ask the girls (that was us). She didn't have a clue.
What I am trying to say is that some people are more knowledgable than others and this can have an impact on the way you and your Dad are treated.
My sister and I also kept a daily diary which really came in useful at various stages of his illness. Everything went into it, dads condition, actions and our feelings (good or bad).
I would also recommend you keep an account of;-
Any changes of medication and the reason for the change
Any other medical ailments and date diagnosed.
Any chest infections.
Any water infections.
This proved invaluable when we eventually applied for CHC.
We are coming up to an election now, have you ever thought of writing/emailing to your present MP who, if I've got it right, is also up for election again.
Carers are fighters...they have to be.
House of Commons
London SW1A 0AA
t: 0207 219 7077
Sorry for being so long winded
Luv Polly x