Two years ago we received the unexpected, devastating news that Mum had cancer, in fact it was secondary cancer and the outlook wasn’t great. However, Mum was completely amazing and until September this year she was doing so well and the cancer was responding to treatment. In September her breathing became a problem and during her 3 monthly scan they discovered fluid in her lungs, Mum at this point decided to stop treatment (a daily oral tablet) as she felt she needed a break which was agreed .
To cut a very long story short they discovered a tumour in her lung had grown and is now taking up the capacity of her lung, Mum went downhill quite quickly from here and became very, very weak to the point going home was not an option (due to the lack of carers available), we were told then she had days to weeks left. Mum is now in a nursing home which she hates and to be honest it feels like she has just been ‘dumped’ there. When the consultant at the hospital and her Macmillan nurse spoke to us all about her going into a home it sounded ideal, she would have her own team who would look after her but she is lucky if she sees anyone once a week. Is this the norm, we expected that the Macmillan nurse might visit but she hasn’t seen Mum since she was admitted 6 weeks ago?
Mum is getting cared for by the carers in the home but it is just basic making sure she is fed and changing her daily. She is completely bedbound now and while the staff are pleasant Mum has very little interaction and is now pretty depressed. This is end of life care supposedly but it’s absolutely awful, there is just no support and absolutely no communication between us as a family and any of the carers. Her physical needs are being met but emotional needs have definitely been forgotten about.
Thank you Fairy Dragon. Mum and Dad don’t have a big circle of friends, they had acquaintances but were content (mostly) to be in each other’s company. The priest comes in from time to time but that is it really.
There has been a change in her behaviour these last few days and we are now wondering if the cancer has spread further or maybe this is just what cancer does near the end, we just don’t know as we have had so little contact with anyone. It came to a head the other day however when Mum told me she was allowed to come home for Christmas, I was furious that it was even suggested as there is no way she would cope with it however it turned out that this was not true, she had made it up. My sister spoke to the nursing home manager and has asked for mental health support for Mum. It’s so hard as I just don’t see the Mum that I know anymore, she has turned into a very old frail woman who is distressed, confused and just not particularly nice to be around (this sound absolutely awful I know but it’s so true). Not the ending any of us were expecting . 
