What I struggled with was the lack of co-operation or acknowledgement from her (often obstructiveness and fierce antagonism), which meant that I effectively had to go “undercover” to meet her care needs: fearfully rushing to change bed-linen when she had dozed off for five minutes downstairs; putting her clothes in the washing machine when she had gone to bed and getting them in and out of the tumble dryer before she was up the next morning; hastily clearing the fridge of rotting food and replacing it with fresh when she wasn’t looking; calling the doctor, hairdresser, and chiropodist secretly to arrange appointments for her and inveigling her into the car on some pretext; asking the GP for a referral to social services behind her back; hiring a carer to pose as a “health visitor” to check on her in my absence and ensure that she had a meal; and ultimately, when all else became inadequate, arranging a residential care place without her knowledge. The worst thing I have ever had to do.
NB: For an important new ruling on information sharing in health and social care, which may assist family carers in discussing concerns with professionals, see The Information Governance Review, March 2013, pg. 119, Principle 7: "The duty to share information can be as important as the duty to protect patient confidentiality. Health and social care professionals should have the confidence to share information in the best interests of their patients, within the framework set out by the Principles."
See also a new document published by Carers Trust and the Royal College of Nursing on the Triangle of Care - the best practice partnership between people with dementia, their family carers, and health and social care professionals.
* The Carers' Call to Action was a time-limited campaign to raise awareness of dementia carer issues; it was wound down at the end of March 2015, but its work continues through a new organisation, Tide.