Friday 27 April 2012

X is for Xerox (copy)

Living with dementia some times reminds me of a Xerox.  It can feel as if you don’t have the original person you grew up with but the copy of the person who is unable to do all those things you took for granted.  I always thought mum would still be giving me advice and our relationship would move on to the next stage of mother/adult daughter relationship. When I was ready to listen she was slowly retreating....

I often imagine how she would express what it is like to have this unknown dancing partner I try and put myself in her well worn shoes, which is not often as looking after the practicalities can be a welcome release from the emotional side.  Thinking about what she is thinking can bring up a whole different set of dialogues that sometimes go like this:
"People suddenly don't seem to understand they repeat themselves, ignore you or get annoyed at the things that you do.  You don’t quite do it quickly enough or the right way they sigh and breath heavily.  Their words jumbling up and they expect you to understand or they speak slowly as if you can't catch their words.  A world where sound is different, sometimes things are loud, magnified and distorted.  They can’t see those things that crawl on the floor, so you pretend they don’t exist, nor can they see the others that often meet us in what they keep saying is my house.  It looks different and smells different and there are new people there who wander from room to room sitting and staring as if lost.
Amanda sometimes speaks in a tone like I’m her child, I never thought the tables would turn I never used to rely on anyone to help me, I tell her not to use that tone with me and I play along for a quiet life, but I do miss my mum.  These bones not quite what they used to be.  I ache as I get out of bed and then the alarm goes off, and they rush in your room - you sometimes don’t get a chance to breath, there is always someone there telling me what I should do, it is very different to how it use to be...."
It is different, I struggle to remember what it was like before, I've adapted as she changes and when I think about how she must feel I give her a bit of much has changed.  I cannot pretend I've got it all together or know all the ins and outs, but what I will try and do is face them head on and grab them with both hands and deal with each day as it comes.

Words so far....

A is for Alzheimer’s, B is for Behaviour, C is for Carer, D is for Dependant, E is for Enough, F is for Fear, G is for Guilt, H is for Health Professionals, I is forIdentity, J is for Judgement K is for Knowledge, L is for Love,  M is for Motherhood, N is for Neighbourhood, O is for Opportunities P is for Purpose, Q is for Quietness, R is for Regret, S is for Strategies, T is forTradition, U is for Understanding, V is for Value, W is for Websites

These posts are part of the A-Z Challenge taking place during the month of April.  I have been sharing about my experience as a carer to a mother with Dementia.  If you would like to know more join the Arts in Health Network and also check out my website for information on some of the work I have done with Creativity and Dementia.


  1. The whole thing is so very frightening to me. I see symptoms in my nearest and dearest and keep hoping against hope.

    Did you hear the recent report that weight training helps those with dementia?

  2. Dear Amanda: I love you for writing this beautiful post. I am sorry I didn't come here sooner. You have possession of two keys which I see as extraordinary and amazing: 1) the empathy to actually try to imagine what your mother is thinking and 2) the ability to love without fear.

    I have two sons who have severe autism.

    I bless the day I received them (they are not twins-- and they also have seizures--Oh! and I have 5 sons in total, plus I have a great husband). I walk in their shoes often.
    They have made me a far better person. I am not going to tell you how you feel. I just think that you are wonderful, amazing, and shine like a star.

    Love, jean

  3. I have great admiration for you Jean and for you Amanda. Not sure I personally could cope although I might have to one day.

  4. Hi Amanda .. you seem to be coping amazingly well - analysing helps - but we need time ourselves ..

    The wonders of why things happen - and I have to do the same to a point, but only because my mother doesn't communicate so much now - I have to deduce and guess ... I'm just lucky she is only severely stroked.

    With many thoughts - Hilary

  5. Jo it can be frightening to see the changes and I often wonder how it feels to be going through it, how confusing it can sometimes be. Yes I hear that exercise plays a role in keeping the person mobile.

    Jean thank you for your visit, its great to have you anytime, you definitely have your hands full and glad that you have a supportive network around you. thank you for your encouragement!

    Jo, its amazing how if and when the time comes we make things work because we have to and we find ways to cope.

    Hilary - we really do need time for ourselves, and thats been something I have been making a point to have. Anything we can do to make our loved ones more comfortable is what helps.


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