David s Blog. Being not oneself or being more in touch with self? August 2012

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1 David s Blog August 2012 Being not oneself or being more in touch with self? Hello to everyone who is a member of Dementia Care Matters - it s good to talk and reflect again on what matters most. This members blog reveals a gap from March to now August - a silent gap and a painful gap. A gap that until now reveals what was the inability to explain in a blog my silence, a silence that for others may not seem that long, but which for me felt like time had gone still. The Creep It comes along slowly and insidiously - slight out of the ordinary anxiety, a feeling of things not right, being overwhelmed by the mundane, a desire to fight back hard that costs you far more than it s worth, a need to take cover from attack and return to the long shed mask so no one can see the increasing panic. The Achilles Heel It s there waiting in each of us. That one thing, person, place, memory or time where we cannot go - for fear of falling off the edge; and then one day you're there again, after a lifetime of steering clear of your Achilles heel, it hits you on the back of the head, it's arrived again. Just when you were so arrogantly sure it had been well packed away. In my case the boy fearing abuse, the gay confused adolescent fearing being found out, the married messed up father fearing rejection, the pioneering flawed professional fearing national publicity - all neatly packed away for 24 years came back at a stroke - the Achilles heel has returned, of being attacked.

2 The Paralysis It starts winning when getting on trains feels full of dread, when sleeping in the weekly hotels becomes more than a nuisance but almost impossible. It s really winning when only clinging to being at home feels safe, everything else is certain danger. Then one morning you realise you can't walk up the road anymore to the office it s a place of harm, it's an impossibility. The office represents pressure, deadlines, not feeling protected, vulnerable. It becomes easier to spend the night browsing on the I Pad, watching or rather seeing the TV, flicking through magazines - anything other than letting the mind 'off ' from its feelings of threat. The Terror It feels terrifying to be fragile - where will it lead? You watch the film 'The Hours. Every word uttered by Nicole Kidman as Virginia Woolf seems written solely to and for you as she sinks in the river with her last words 'with thanks for all the love and all the hours.' You decide you want these words at your own funeral. You know you must ride the terror out - it always subsides doesn't it? Reading Maggie Gee's book 'My Animal Life summed it up exactly when she writes: 'I sat at home, in the new vacant summer, watching things float away from me. And everything turned blank and grey... When I lay down to sleep, my heart beat madly and I woke terrified, night after night. Then that fear invaded my days, as well... I do not enjoy recovering this period, still feel its somehow perilous... sometimes the terror has brushed against my cheek, often at night, like a bats wing, passing, a leathery thing whispering of claws in the darkness, hissing that if you fall through the surface, there is nothing underneath, just falling for ever. I won t invite it to come near again.'

3 The Separateness It feels then better to be alone and anyway no one 'gets it' - those that try are a million miles away their efforts not wasted but too distant to matter. Sleep, eat, work, a beloved colleagues Birthday, no longer seem to matter or they matter as to be so far away that you can t participate - the sick making feel in the stomach always rules. Major achievements become washing the kitchen floor, walking into town each day just to walk and opening the mail is huge always fearful the post will contain 'attack'. The Restoration It becomes clear you are at a crossroads only last seen 24 years ago but the roads are all too familiar. You are staring into the abyss, looking over the edge and have to decide whether to slide down or resist. The choice and it is a choice is stay hidden, falsely safe, in limbo, while people recommend doctors, pills, or worse. Or be kind inside to oneself, replace the bad internal messages with better ones, allow oneself real time off, do lovely things, push other peoples bad intentions away and see them as weakness, focus on something you really want to do, change pace, change the environment, plant flowers and watch the sea. The Resources It takes a lot of love to not need doctors and pills. It takes a lot of time and a lot of hours to contradict the hurt inside and to begin again. It takes people and money too - replacing terror doesn't come cheap - someone has to keep people, home, work and things that matter still there to return to. And when you do return the feeling that no one ever really understood remains - deep down you know they must. We work in mental health for goodness sake there s no need to come out' with this surely? They too must have felt the bats wing, its just they don't want to be reminded how close by its waiting. So the

4 conspiracy of silence on DEPRESSION hangs in the air. People who have never experienced it stay silent, wanting and needing to believe it won't come their way and those that have experienced it appear to need to keep it battened down. Rather than feeling you've joined a club where you know there are countless members you're left feeling somehow one of the kids in the playground that is picked not to be in the game but hovering on the edge watching. The Hope It takes people who are vulnerable to feel others vulnerability. It takes a lot of positive intentions to counter so many negative intentions out there. It requires constantly getting rid of the mask when you want to return to it. It means believing as an act of faith that goodness always prevails in the end. It means accepting that Feelings Matter Most in all of us but sometimes whose feelings matter most? If we believe that we must in dementia care always look to the meaning behind the words and actions how easy is it always to apply this to each other? Final Thoughts As R D Laing stated; 'Mental Illness is just a set of comprehensible reactions to impossible demands made on sensitive individuals. It is a miracle that people living with a dementia don't drown every moment in depression and it is an act of hope and spirit that each of us working in dementia care tries to restore feelings of well - being. The challenge for us all is to do what we can to prevent dementia becoming everyone's Achilles heel. I shall remember feeling the bats wing. Remember when living, working, supporting and loving someone that we are all vulnerable to The Creep, The Paralysis, The Terror, The Separateness.

5 It's around the corner waiting and if I had had dementia too what would it have taken to give me The Restoration and The Hope to want to come back? It's feeling good to be 'back' again, if a little more wary and bruised. Maggie Gee sums up her return from depression in this way: 'I learned, slowly, piecemeal, gathering it as inefficiently as fragments of gold from a dirty river, that life will save you, if you let it. ' 'But the randomness of it has stayed with me for ever. I did not save myself, by initiative or courage, by strength or cunning, I was saved by chance.' I look forward to seeing you all again, talking, reflecting and learning on what matters most in life whether we are living with dementia or just living with ourselves. David x David Sheard (Dr) Chief Executive/Founder, Dementia Care Matters.