Interview 09- Carers of people with dementia

Age at interview: 53

Age at diagnosis: 61

Brief Outline:

Her mother, a strong minded widow, bitterly resisted surrendering her freedom and finally had to be sectioned before being transferred to residential care. She died recently twenty years after the first signs of her dementia, in a nursing home.

Background:

Carer is the oldest daughter of three children, who over many years found the conflict between responsibilities towards her mother and her young family very difficult. Carer is married but has given up her job as part time social worker.

Further information about this participant can be found on socialcaretalk.org - Carers of People with Dementia

He felt that when his mother was nearing the end of her life, the 'medical' decisions he was asked to make should have been made by the doctors.

But it was you know as a family you're put through, in a time of real distress, some totally thoughtless kind of stuff, really thoughtless. I mean you could see by looking at her you know you're not going to want to resuscitate her for a start and what's all this for you know, who is it for all this stuff about antibiotics and drips and tissue, you know who is that for, whose benefit was it for? Was it for my mother's? I don't think it was for my mother's at all. It was to make sure that you know the doctors had done their bit.

 

And nobody thought about how to let her go in a reasonable way without it being a traumatic experience for all of us, which it was. No, so people don't think about that. I think when we saw the consultant he was quite horrified that we'd been made to make decisions about withdrawing antibiotics. I mean he felt that was a medical decision and that it was nothing to do with us and that we shouldn't have been put in that position, to make those sorts of decisions.

 

And you know so, but then he should be instructing his junior staff that it is a medical decision and it's not up for discussion. But at every point in hospital you have to made a decision, everything. You know it, and 'Are you in agreement with this?' 'Do you agree with that?' And some things you know, some things you don't so you ask the right question, you think you've asked, fortunately on the day we had the discussion about continuing antibiotics the deputy manager of the home was visiting us and said 'Do you want me to stay while you have this discussion?' Fortunately she had the presence of mind to ask all the right questions so that was really helpful.

 

But I don't, I think the medical profession could get their act together a bit better. I think if you're into hospice care and palliative care you understand that but in an acute hospital the idea is that you do everything possible to prolong life. And I don't think my mother was very well served by the medical profession at the end actually. Certainly no thought, no thought went into it.