• You have to believe it is worthwhile: 04 April 2018 | View comments

  • 27th March 2018 | By David Jolley

    Having gone through the final iterations to agree a version of our chapter on carers’ needs for George Tadros’ coming handbook on liaison psychiatry, I am saturated with the facts and arguments for good practice. It all seems so familiar, so much common sense and so widely known that I was wondering if it needs saying again.

    I met Marlene on Sunday. She was hardly recognisable for the anxious, thin, uncertain figure that I have known these past 18 months. She looked taller, fitter, and her hair a fountain of curls above a confident, smiling, caring face. George’s struggle through the last stages of dementia has been completed and she has her life, her home and her involvement with friends and the world outside to be lived again.

    She has memories of their long and happy years together, and reminders of them around her. Unhappily there remain the memories of the very last weeks which were spent in a general hospital ward where the regime and individual nurses were ill equipped or disposed to understand and provide for his needs and hers.

    ‘In those weeks he ate hardly anything. They gave him chips and sandwiches – things he could not cope with. I took him treats myself but they were not enough.’

    Then two new nurses came to the ward.

    They had worked on a unit which specialised in people with eating problems.

    ‘This is no good.’ They said out loud – and went off to their previous unit and obtained suitable supplements and preparations which he could manage. He ate and drank them all.

    ‘They took time with him – and in those last days I knew he would be OK. I thank God for those nurses’

    So it may be common sense to many, and it may have been said before, but it needs repeating over and over.

    Writing a chapter is all very well, but how widely will the handbook be circulated and read?

    Could we have a poster prepared which would be placed on every ward?  People with dementia and their carers are to be found on nearly every ward in every hospital.

    Can we worked toward a system where every ward is supported by/owned by a Friends Group – who will monitor what goes on – and contribute to the quality day by day by their presence and modest contributions?

    It would be a good thing to do but there is likely to be resistance in many places – Just the places where the arrangement is most needed

    I wonder if we can muster person-power to do this in our local hospital. Would it be the first priority for people’s time and energies? Mostly it would be something that needed experience of caring for a loved one living with/dying with dementia. It could not be taken on by current carers – they have more than enough to do already.

    Maybe it is something to think of in the life after the death of the individual who had dementia – for immediate carers or other whose lives were affected.

    We keep thinking, and saying, that if we get it right for people with dementia, it will be right for everyone else too.

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