I just wanted to share an excerpt from Nick Gerrard’s Book, “What dementia teaches us about love” , because it resonates strongly with me and I think it will resonate with a lot of carers, and those who are cared for too . she writes:-
Attachment and responsibility and, above all, love , continually threaten self-belonging.The claustrophobia I can sometimes feel at my responsibilities [as a mother , wife , and daughter of someone who suffered with dementia ], is a fear of self-loss. We all need boundaries to possess a self, and we all need to breach those boundaries in order to live in a world of relationships and connection - for what other world is there? It’s not a balancing act, quivering and tense on a tightrope hung between two opposing imperatives, but a continuing flux: advancing and retreating, giving and withholding, reaching out not the world and retreating back from it. …Dementia [ and I - Pippa -would say conditions like Parkinson’s, with or without dementia], undoes this delicate and endless negotiation with the world, this tidal shift of reciprocity. “
She goes on…you may like to get the book or request it from your local library.
In what I would call the early stages of becoming a carer, I was thrown in at the deep end by my OH ‘s hospitalisation and then return home very much more disabled, mentally and physically, than he had been prior to admission. I think my “ self” went out of the window at that point and everything revolves around him and his needs, wishes etc. It is a slow process of trying to make space and time my self, trying to remember what it was before all this happened and to stay in touch with it. Too easy to be swamped by the many and various demands of being a partner-carer, and that does no favours to anyone least of all my OH.
An added complication for me of bullying at work which has wiped out almost all vestiges of my remaining self remained, and I have yet to find a way of dealing with that one.