“It’s in the details” – could we do better in supporting families?

Whilst supporting my mum looking after her husband in a care home in the last year, I have noticed how much less critical she is of the care than I am.  She is always very grateful for everything the carers do and never wants to make a fuss. I think this is quite a common response for a generation of people who don’t make high demands and are appreciative of everything, even when others might find it lacking.  I suspect that my generation and those that follow will have much higher expectations.     

I guess it is not helped by the fact that I know how much better the care COULD be as I have visited so many great Butterfly Homes.  On the first visit to the care home after many, many months of separation, my mum was understandably emotional seeing her beloved husband and my step-father, Philip* across the garden from us.  Philip has dementia so, in his reality, he was in the garden of a hotel or bar and, as a man who loves his red wine, he was less interested in our arrival, but more in the absence of ‘good service.’  I asked the carer if she could bring him out a glass of something, but she was preoccupied by the rules and said he would have to wait till he was back in his room.   Philip became more and more distracted and grumpy and told us “This is undoubtedly the worst bar in France.” (He is in an English home, but used to visit France a lot with my Mum.)  Whilst this was in some ways a very funny moment, it was actually a clear indication from Philip that he wasn’t settled.  The carer didn’t appreciate that the simple act of offering him a glass would have relaxed him and enabled my mum and him to enjoy a much happier visit.  She was too caught up in the ‘rules’ and didn’t know enough about dementia to understand what mattered most in that moment.

On another later visit inside the home when Philip was near the end of his life, there was very loud pop music playing in his bedroom which he would have hated.   My mum and I had repeatedly told the home that he loved classical music and there was a life story poster in the room explaining this amongst other things which were important to him.   My mum was upset by this, but again didn’t complain, saying that the carers probably “didn’t have time” to find the right music for him.   Once again, I was left feeling angry and frustrated by the lack of attention to simple detail to Philip’s wellbeing.  

Some nurses and care workers in the home were incredibly kind of course and I am hugely grateful for this.  But there were others who were very abrupt when mum visited, constantly reminding her of the time restrictions, being quite rough giving the Covid lateral flow tests and not at all sensitive to the terrible anguish she has been through being separated from him.   The basics of person-centredness must surely include kindness to families and an understanding of the huge losses and pain of the last terrible year for relatives.  I am left feeling that whilst many homes have been amazing, there are others which definitely ‘could do better.’

*Philip is not his real name, as my mum is anxious that the staff of the home don’t recognise this story and blog.

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