My father doesn’t recognise me anymore.
He looks at me and asks who I am. When I mention my name his face lights up and he says ‘of course it is!’ It may be brief but it is so uplifting.
My dad has Alzheimer’s and I am a nurse. I wanted to write this blog as I am now on the ‘other side’ - a nurse who is also a carer and sees her once active, loving and adoring father confined to bed, unable to feed himself or know when he needs the toilet. I always used to joke with my father that he chose well when he married my mother - that he only married her to look after him in his old age for she is 19 years his junior. How right that turned out to be, for my mother is now his main carer at home.
This weekend I went to visit. When I got there my father was sat in his chair; he had not been downstairs since being home from hospital last week as his mobility is poor. For this reason we are usually confined to the bedroom; it has become the centre of the house and I guess, therefore, his world.
The carer had been that morning and washed him. My mother fed him his lunch and then I helped her put him back to bed. That evening, another carer arrived, butthis visit was fleeting - a change of his pad and she was gone. Ten minutes in total was all that was provided, even though my parents had paid for 30 minutes. I volunteered to stay with my father that night and allow my mother to get some rest as he is not sleeping. All night he was talking to imaginary people and singing “Singing In The Rain”. Needless to say I didn’t get much sleep.
Today is Monday - a week after discharge, and my mother has asked for a GP visit as she was up all night with my father again. I have phoned the company providing the care package to complain about the carer providing ten-minute visits when it should be half-an-hour and phoned the health centre to find out what services the district nurses can provide to help us. I am waiting for the community matron to ring me as I have requested a continuing care assessment which I found out about from a community nurse on Twitter. My mother is waiting for social services to ring her and tell her exactly how much my fathers care will be now that it has increased and she has just received a letter telling us that my father has a three-month wait for an occupational therapist assessment. This is all before I phone for the community mental health team who assess once a year. My battle continues to find out who does what, how to access it and how much it will cost; I owe my father that much. It’s confusing, frustrating and sometimes makes me cross.
So what is it like? On top of all the heartache and sadness it is confusing, involves lots of waiting and is extremely frustrating. Living in a bedroom when we want to take Dad downstairs to establish a more ‘normal’ routine is hard - how can he be expected to understand it is nightime when we don’t move from the one room? How on earth do we find out who can help us with what we need to provide the best care at home for my Dad? The system is so complex - even for me as someone who is supposed to know her way around.
My aim of writing the blog is to share our experiences so that other nurses and carers can see it and we can perhaps be some help in terms of looking at things from another perspective.