Derek from Wigan has written about his experience of looking after his wife who lives with dementia. Here, he shares reflections of assuming the role of ‘carer’ – while retaining his role as ‘husband’.

A major impact of our caring plan is that whereas previously I had been used to us making joint decisions, with much give-and-take, I find that how we live now is largely driven and determined by what my wife feels is okay for her. It is essential we now live in this way – it can hardly be otherwise, because ‘I can change and she can’t’; the dementia has seen to that. Even compromise has largely disappeared and isn’t even expected.

Now I am more a guide and supporter, with my wife, unknowingly, in the driving seat, with (her) ‘need’, ‘importance’ and ‘pragmatism’ marking our journey.

Put simply, as Carer, I recognise that I need to accept that ‘What was, now isn’t’ and ‘That’s the way it is’. Such acceptance won’t always be easy, even though it is essential, with memories of the past sometimes clouding the present.

Interestingly, the changes we have needed to make in our lives sometimes leaves others puzzled, rendering their expectations of us no longer useful.

Self-denial by the Carer is not easy. It can, however, be immensely worthwhile, with great rewards for the carer and those they care for.

With some early difficulty, I have learned to enter my wife’s world, even if in a limited way. So when, for example, she repeatedly asks the same question time and time and … again I now simply repeat my answer time and time and …again, without edge. This was difficult, but now I find it isn’t.

It is perhaps understandable, but still quite puzzling, that adults enter the world of children with complete relish. We seem to accept the limitations of the child’s mind and are quite happy to copy the child’s incomprehensible language and infantile behaviour, even publicly. But we are quite reluctant to enter the world of ‘different’ adults, even privately.

Caring can be a particularly difficult and lonely calling and the days are long. Our capacity and resilience can be greatly enhanced by having a strong awareness and feeling that something supportive is wrapped around us, that we are part of something bigger with which we have an easy and regular contact. On occasions, this might only provide reassurance, but when you don’t really know what you are doing then reassurance is everything.

All this can be, and often is, so well provided for by friends, family and by fellow-carers, on the basis that a problem shared…But professionals also have a distinct and essential role to play in this respect. My time spent caring, plus some awareness of the experiences of other Carers, indicates to me that professional help, particularly covering the first few months, is crucial. Such support would be characterised by being proactive and regular, ideally including an emphasis on the essential, proven ingredients of caring, and the extent to which they are understood, accepted and practised. It would be available until a working plan was achieved.

Once a successful launch has been achieved the professional support could be reduced to, say, a twice annual contact, again proactive, perhaps by telephone, offering a chat, with the aim of providing reassurance for the carer and feedback for the service. Obviously emergency help as needed would be over- and- above this pattern of service, and might indicate a closer relationship for a period of time, as required.

Professional help, which offers support when needed and also engenders a feeling of warmth and belonging, simply saying “we are here if needed” will encourage the carer to seek help, something we aren’t necessarily good at doing. Carers also need Carers.