HELLO, I’M ME

Brian: Hello I’m me and I’m a statistic.
June: Yes, hello I’m me and I’m married to a statistic.

Brian: But then, it occurs to me that everyone is a statistic of some form or other so why should I worry about mine ???

June: PEOPLE, IT SEEMS TO ME, ARE DIVIDED INTO TWO TYPES, THOSE WHO LIKE SITTING PEOPLE WATCHING AND THOSE WHO BURY THEIR HEADS INTO HOODS TO ISOLATE THEMSELVES FROM THE MELEE AROUND THEM.

Brian: COPING WITH DEMENTIA IS LIKE THAT.

June: COMPROMISE…… life is a compromise and after receiving a dementia diagnosis this compromise seems massive, larger than the great wall of China and deeper than the deepest ocean. Those receiving a diagnosis may feel :

· vulnerable, alone, scared, tired, challenged, wanting to fit in but rarely so doing, confused & unable to clear the mist, singled out for punishment and

· grief as in a bereavement….. in a funny way it is possible to grieve for the happy, carefree life they had lost.

Brian: But on receiving my diagnosis on 4 Feb 2009 June & I felt :

· happy because our uncertainty was at an end

· relief that the cause was not a brain tumour or other life threatening thing

· empowered because we could move forward

· one step closer towards receiving medication

· an opportunity to make choices, push back boundaries take risks.

June: ……….SO, HOW TO GO FORWARD ?

Brian: Of course we did many practical things which have worked
and we still have a wonderful life but now we look to the future and share with you our expectations, our desires our dreams.

June: WHEN HELP IS NEEDED THERE IS NO OPTION BUT TO AIM FOR THE VERY BEST IN PERSON CENTRED CARE BUT THIS REQUIRES A PARTNERSHIP BETWEEN ALL CONCERNED.

Certainly with the help of any family, the CARER, whether in the home or in a care environment, needs to :-

Brian: … Please focus on the REAL meaning of life for me

June: Please interpret Brian’s feelings into words, his history into reminiscence & actions

By championing his uniqueness you create care with a sense of his own identity which does not fit within a recognised ‘ pattern ’ but utilises his skills & attributes to help both of you

Brian: Please grasp the DRAMATIC impact that emotional memories can have for me

June: When Brian needs your time, warm up with hot topics ( a wedding photo ? ) calm down with weaker, quieter memories ( warm socks or favourite magazine )

· repeat successes, he won’t remember. It doesn’t matter as long as it stimulates or calms, pleases or inspires him, adds interest ‘ for the moment ‘, recharges goodwill between the two of you.

Brian: But I know that in your BUSY schedule you must balance NEEDS v wants, person v person and TIME CONSTRAINTS v quality of care

( Brian continued overleaf…………………….. )

Brian: MANAGERS PLEASE DON’T……..

June: Focus too much on the medical aspects of DEMENTIA but start with imbedding feelings of equality and caring in a joined up way … the unique person not the cause, the likenesses between the carers and the cared for & their families who all experience diverse emotions, compromise and doubt.

· Don’t forget that gaining better knowledge and understanding of the factors influencing behaviours and emotions can transform attitudes and foster greater sensitivity, thoughtfulness and empathy towards the individual and their family.

Brian: Please DON’T stop encouraging your staff to make positive, important daily interactions & reward them. I don’t think that I could cope satisfactorily with the cumulative effects of boredom, lethargy and staring into space ? COULD YOU ?

June: Please don’t under-estimate the value of drawing comparisons :- * For those WITH a short term memory the effects of joy, sadness, learning and success are cumulative and can build into a powerful crescendo of happiness and pride or sadness and disillusion.

Brian: For those WITHOUT like ME, none of this is possible. On the negative side the detail of DISAPPOINTMENT and failure is LOST but the ‘low’ state can continue. However the build up of JOY doesn’t happen and even hours or a day later the cumulative THRILL of an event can be lost from me.

June: …..CARERS/MANAGERS …PLEASE DO ……..

· focus on the vulnerability of all concerned ( sufferer & carer/family ) by looking for emotions in behaviour.. experiencing the brain journey. Feel 1st act 2nd

Brian: aim to ensure that my quality of life is as positive as possible, looking for what can be done rather than find excuses for what cannot

June: pick up clues……observe carefully what is happening to Brian … note the absence of triggers ( like boredom ) or stimuli ( like a visitor ) or vice versa ( peace v disturbance ). Watch for subtle changes in his well being. Working through your observations with me can help devise imaginative and successful ways of d/w situations. I and my children would want to do this to help us feel useful, involved, to share your load and maybe ease our consciences that we have had to entrust to you the care of someone we love.

Brian: realise that YOU and I will go on learning together through doing…. NO ONE can up skill and become a theoretical expert on dementia. I don’t even understand what is happening to me but we’ll soon know much more

· remember that we ALL search for our own identity at numerous times through our own lives. If you aren’t sure who YOU are how can you help to create person-centred care plans for me or others ? YOU need personal ‘me’ time too.

June: watch for responses to what you do. What was good, what was negative ?

· try to pursue emotional intelligence rather than develop ‘ competences’

· and do share your emotions and reactions… no man or woman is an island…I urge you to evaluate your emotional hurdles and constraints and discuss with your mentor

Brian: please celebrate successes with hugs, laughs and smiles.
Nothing is stronger nor has a better effect on me.

June: by building true warmth into a happiness model which won’t need dusting just a twitch of facial muscles you can transform a grey day to one with rainbows

Brian: offering me a hand in companionship can be soothing when words don’t work

· and just leaving treasured pictures or objects in view can thrill or calm me into feeling better.

June: TO CONCLUDE, MANAGING EXPECTATIONS IN ANY RELATIONSHIP OR SITUATION IS TOUGH. MEETING THOSE EXPECTATIONS EVERY DAY IN EVERY WAY IS WELL NIGH IMPOSSIBLE IN THE REAL DEMENTIA WORLD.

Brian: YOU CAN ONLY DO YOUR BEST AND THAT WILL BE GOOD ENOUGH BECAUSE OF THE JOB CHOICES YOU HAVE MADE.

June: On second thoughts darling, I don’t mind being a statistic what about you ?

Brian: … No, count me in….. I’m up for it.