@sdmhred - thank you! Happy to have the quote used. If it would help I can also talk to the researcher.
I think it is about the fact that as carers, we are often fighting an unseen battle, with services, for and sometimes in the best interests if not wants of our loved ones, and also fighting our own feelings of frustration, inadequacy, sadness, family tension, you name it. When some one "gets" this, and we don't have to fight, it is as though you are coming out of a fog or somewhere where people cannot see you. It is validating, though these moments are often small within a much longer journey which is very hard.
Being a carer is by far the most terrifying thing I have ever done.
Making decisions that literally keep me awake at night. I am lucky that I have support from my sister. Seeing both my parents go through things that I cannot control and that most other people have no inkling of.
At it's worst it can be the total denial of self (after all, its rarely about us is it?) and at best you get glimpses of why you care as part of an emotional rollercoaster. I am constantly amazed at the resilience and determination of people on this forum.