I am going away for a week, working. Work in this way doubles as respite. It will give you a break, people say: you deserve a rest. For those who know, working on a group relations conference is not reallywhat you would call a rest, but I recognise that what is being said is meant well.
Unfortunately health and social services provide care to support carers. It is unfortunate because just at the moment I am not a carer but a worker. I need to know the who and when of what’s happening. I am managing the informal system , with a rota of family and friends – the only gaps in the rota are times when a local authority carer is scheduled to come in – I have had no confirmation of what’s happening then, but I know that two of the regular carers are on holiday.
Informal carers are mostly grateful for what they can get: workers demand and need something more reliable than that.
It is policy that people should be able to stay in work; there is even a Carers (Equal Opportunities) Act that no-one has heard of. But the street level bureaucrats who really make policy are not concerned with my need to stay available for work. Psychologically as well as physically available.
My experience of living with dementia prepares me in a way– it develops my capacity to stay with the moment, however long it takes.