Most active people with Dementia get used to comments like ‘ no one would ever know you have Dementia, you don’t look as if you have Dementia, are you sure you have Dementia. I’m never sure whether the comments are meant to be re-assuring, challenging, disbelieving or just plain rude. Neither am are sure how to reply. Australian Dementia Campaigner Kate Swaffer has the standard comment ‘ and you don’t look like an ass-hole’ but that’s not my style, though I could get there.
My other pet hate is ‘ oh everyone does that’ or ‘I do that all the time’ What is being said? Am I being judged as making a fuss about nothing or even lying . Is it a subtle ‘put up and shut up’ I put up with the things that happen – I have no choice but I won’t shut up because I believe that the realities of Dementia need to be understood and with understanding what may happen is better care and support, not just for me but for others. I won’t shut up because the iniquities of the postcode lottery which means that the quality of care and support given to those living with Dementia, or even if any support at all is offered can depend entirely on where we live.
What makes me even more despairing is when senior professionals in the field of old age medicine write papers doubting the diagnosis of prominent activists.
Life with Dementia is a total paradox. The brain is so complex, the different illnesses that cause Dementia affect us in so many different ways that finding a path through the confusion, the disproportionately heightened emotion, the disorder of the senses and the sheer exhaustion is a marathon each day.
The parts of me that remain intact surprise me. Anything that is connected with my work as a counsellor seems unaffected. I am still able to teach – and do. I remain articulate both in speech and writing. The poetry I write pours out of me in a creative explosion, so that my book ob Dementia will a collection of poetry, All good so far.
Most mornings I wake up with no idea of who may be on the other side of the bedroom door, some times this leaves me mildly curious, other times I am very frightened. Dressing, not just getting dressed but deciding what is appropriate to wear gets harder and harder. A few days ago in the biting wind and rain I was bare legged, wearing summer sandals, no coat and I had forgotten to use my essential incontinence pad. I looked as near to a bag lady as dammit is to swearing.
Cooking, preparing a meal, working out timings for anything are all long lost skills. I have my strategies for coping but sometimes I forget them too. I don’t think I am depressed but simply giving up can seem like a reasonable option. So how dare someone suggest that because I am an activist and articulate with it I have a dodgy diagnosis,
But then something intervenes, a visit to the Film Theatre attached to the local university to watch City Lights with my grandson and laugh until I ache at the comic genius of Charlie Chaplin,: Watching Lillian, 86 and in late Dementia having a mock gun fight with a visiting 3 year old, with dramatic action that could have found a place at the Gun Fight at the O.K …….(.OK something)
What was it William Blake wrote?
Life is made of joy and woe,
And when this we surely know
Through the world we safely go.
Wise man.
Fizzy Hammers 
So many thanks, Sheila, for your courage and intelligence in trying to make these truths known. I’m not into dementia yet, but have been open about the prospect, on the base of my cognitive eccentricities and medical response to them. I think some people who say, “Well, I do things like that too,” are frightened that perhaps it’s on the way for them, and are trying to reassure themselves by reassuring us. With people who actually seem to care I say, “You can’t see what’s happening inside”. There is the puzzle of some of the things I do being analysed as ‘age-related’, so another of my replies is, “the specialists often find it hard to say what is age-related, and what has another cause”. At other times I shrug mentally, thinking, “you’ll see in time”, or smile gently, congratulating myself on putting on a good act.
If anger is one of your life-rafts, good for you. I’m so glad that you are able to do the things that are really important and essentially you. Interesting that William Blake (who seemed either naive or in a fantasy world when I was an intellectually arrogant teenager) comes to hold more and more meaning.
I continue to hold you in admiring love, and hoping when my time comes I can be as spirited and truthful.
Elizabeth
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It’s good to hear from you Shelagh and I have to confess to having said “well I do that too” to people… I shall endeavour to avoid that in the future. Although I cannot conceive that people would question a diagnosis.
We cannot know what you, and other people living with dementia, go through but your honesty gives us insight.
Take care Shelagh, I think of you often
Claire x
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