blog

View all authors
More filters

Pariah carer

Anne de Gruchy - June 13, 2016
Listen to this article

I am the person who fights unwinnable battles and batters her head against walls that will never come down. I get stressed, but cling onto the wreckage for so long that I am holding onto a single piece of driftwood by the time I either sink or accept rescue. After five years of this I should have learned better, but I haven’t.

This is a topic I’ve been meaning to write about for a long while but it’s hard to own up to the ‘Pariah’ label. There are echoes of the subject in my previous post How NOT to Get a Carer’s Assessment. Recently I have had to hand over most of my dealings with dad’s care agency to my sisters in France and Australia – partly because I am not coping and partly because my extreme distress when dealing with things is jeopardizing our relationship with the agency. It’s not that the agency is perfect and I’m not – we have had serious issues of care to contend with that have put my dad at risk at times – it is just that I get so upset and frustrated when I try to sort things out that my involvement can be counterproductive.

This is not something that is unique to my relationship with dad and his caregivers. I struggle with many things in day-to-day life. Boiler breakdowns or even a dripping tap can upend me. But it is dealing with the system – bureaucracy and phone lines and the complexity that seems to be built into simple tasks nowadays – that totally floors me. It is bad enough trying to deal with this in my own life, but taking on dad’s affairs too has been a step too far.

My Pariahship doesn’t just sit with the system though – I get frustrated at dad himself. At his lack of insight (which is part of his dementia), at his stubborn intransigence (which is part of his personality), and at his inability to accept help gracefully (which is partly his bid to remain independent). I say to myself: ‘Give willingly and lovingly or not at all’, but that is easier said than done. Sometimes I find myself sat at the breakfast table arguing with dad and I end up shouting. Sometimes he shouts at me, or bares his teeth, but often he just looks like a lost little boy and I end up crying and apologizing, and we have a big hug, and I say what a rotten up-and-down daughter you have, and he strokes my head like I was five again.

There! The paragraph above was really hard to write, but I’ve said it. It’s like a confession – a guilty secret – to say that you don’t cope with caring for someone who you love. Yet I know that other carers will identify with this, at least to some extent.

Friends and family advise me to pick my battles, and they are right. That you have to weigh up whether the outcome is worth the cost. Others understand my urge to engage with a system that often will not help my father or me. Mainly, like me, these people have worked in the field of health and social care and are concerned about issues of safeguarding and capacity. But in the final analysis it is the carers that dad is relating to day-to-day, and they are lovely people who genuinely want to help.

In the end it is about people, pure and simple – I just wish I could be the person dad deserves. Deserving or not, though, I am his daughter and he will always be my dad.

Anne de Gruchy

Writer and long-distance carer

annedegruchy.co.uk

I came to writing late, at nearly 40, during a gap between jobs – a period when I also studied theology. I hate having time on my hands so I thought: I’ll write that book I’ve always talked about – and I did! Since then I’ve written two novels, a humorous theological book, short stories and poetry.Now in my 50s, I find myself juggling time between home and my father’s house in Dorset. Caring for him and managing his care package and finances has added a new dimension to my life. Unable to juggle this with mainstream employment, I find myself with the opportunity to develop my writing and artwork alongside a caring role. My experience is that every difficult decision can also be a blessing if we are open to it…

View more by Anne de Gruchy

Photo of Anne de Gruchy

supported by

University of Nottingham logo

about these blogs

Dementia Day to Day has been created in partnership with the University of Nottingham School of English and Trent Dementia.

See disclaimer

Copyright © 2025 Trent Dementia Services Development Centre

Trent Dementia Services Development Centre is a Registered Charity No. 1109855
Registered as a company limited by guarantee and registered in England No. 05409539
linkedin facebook pinterest youtube rss twitter instagram facebook-blank rss-blank linkedin-blank pinterest youtube twitter instagram