The Parkinsons Path – Part 1

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Mum wearing a tea cosy… And why not?!

This week – 7 to 13 April 2014, is Parkinson’s Awareness Week. My mother lived with this neurological condition for the last 15 years of her life and so many people I know are still affected by this either directly or through some one they love…

My mother was who she was… and then like of all of us she grew older… So she tripped and stumbled sometimes. I remember once she fell in the path of a man in a theatre, as we were all rushing to the interval up the central aisle… There was a sarcastic comment, which fortunately she didn’t hear, and I couldn’t be bothered to shame that person’s ignorant and judgemental utterance… Let’s face it, I have judged so much on face value too, especially where my mother is concerned…

But then we don’t know people’s back stories as a rule, do we? That man misjudged a trip for bad manners, and was annoyed because someone was in his way… He wouldn’t be the first or the last to make a momentary misjudgement, after all he had a whole life time of his own experiences that took him to that place – verbally, logically and physically…

And I too have a lifetime’s experience of judging my mother, so what can I really say? For example, I just thought that the dribbling spools of saliva that dropped from her mouth at meal times were part of a character set of behaviour, a lack of self awareness and control…

And yet as I grew to learn more about the condition known as Parkinsons, ultimately I learned more about myself and my own perceptions too… The excess production of saliva it turns out, is just one of the myriad of symptoms of this condition…

When my mother was diagnosed, she liked the fact that she had a label. As she had developed a tremor in her hand, we weren’t entirely surprised. For me that was a subconscious fact and for my brother, something he had already consciously spotted and considered. Her symptoms were mild then, yet my brother and I knew that she faced certain degeneration. This was something from which there would be no turning back. She was in her 70s… something will get us all in the end…

So we started on the medical treadmill… She had a week or so in hospital being tested. At the beginning she was in good spirits and enjoying the attention and drama. I didn’t see any fear or concern. And I always liked how she lived through the whole Parkinson’s experience, in that it was her ‘thing’ and not a case for constant self pity. Odd, because I judged that she ‘did’ self pity and victimhood a lot in her life, but not for this this real and causal happening…

Life continued with regular trips to the consultant – weighing, walking and pushing. Then talking, and then the tinkering… Tinkering with the drugs – changing the combinations, increasing / decreasing the doses, and this every single time we went. The drugs have to be taken frequently and regularly. They must be administered on time – there is a regime to follow. My mother found it difficult to get her increasingly muddled head around it all.

My brother and I became adept at taking the consultant’s spidery hand written instructions and turning them into a timetable (for the kitchen wall, her handbag and my handbag), which we would then explain, first to my mother and then later to her carers.

My mother joined the local branch of the Parkinson’s Society and I researched the condition, bought books and researched online about it. I remember being mildly surprised when a friend said that I was going a ‘good thing’ educating myself about it… I had always felt that I just never did enough…

So time moved on and mother’s condition deteriorated… We would talk about it and some how my brother and I took the same tack with her – we could see self pity starting to creep in for her and would show sympathy and talk about it and yet also acknowledge pragmatically and without brow beating, that this was how it was. I would then smile and say that regardless we should absolutely make the most of the time we had together.

Over the years mum had bemoaned the fact that she never got enough time and attention from me, and I in turn had rebuffed that in various ways. I would never kow tow to deliberately implied guilt and so, I simply spent the time I spent with her. I had explained to her over the years that I had my own life too. I had a busy career and a restless nature. Over time the complaints never completely went away, but they certainly lessened. When my mother compared her life with other people, she realised that there was more colour and activity in it, than for so many other people of her age and in her situation.

We would go out for meals, to the theatre, to the cinema and on short holidays. On her 70th birthday I treated to her to her first spa day and what an investment… every single year after that she treated me to the very same thing; whether she was well enough to come with me or not. She loved the self care and specialness of the whole experience…

And sometimes when we discussed having to slow down, I would smile fondly and say, ‘when you’re in a wheel chair it’s not gonna stop because I shall simply drag you around every where instead’! And she would chuckle in delight…

Then the pain started to noticeably increase, especially in her legs. The tremor spread from her arm, all down one side, from shoulder to toe. She was living in sheltered accommodation at the time and after a while couldn’t remember to take all the drugs on time. This is crucial to managing Parkinsons – drugs must be taken in a regular and timely way. So it was a wrench, but she left the home and social circle she loved, and faced the upheaval of moving again – this time to a place where there was more ‘care’ on hand – both to physically take care of her and to ensure that she got her drugs on time.

She had a posh new apartment and my brother and I settled her in and made it a home. It was pristine and shiny and she was very proud of it, but it soon became apparent that she wasn’t getting the level of care that she needed. The staff were not administering the drugs on time and often forgot altogether. We talked to the employees and we talked to the management. It didn’t change. We explained that it is absolutely vital that the drugs are administered in a timely fashion. Still she was ignored. We brought in her Social Worker – who talked to the management on at least 3 occasions, with us present. Still no change…

It was just hideously endemic – the people employed either were not educated enough about the situation, not paid enough to give a damn or else too busy to prioritise an urgent medical need. It is also a 24 hour / 7 day a week situation and so where one member of staff would be aware, the person on the next shift couldn’t or wouldn’t give a damn and didn’t follow the regimen pinned to the manager’s wall. I was horrified and angry, and alternatively discussed, educated and berated them, all to no avail.

Finally I got more support in my own life as I met an amazing man and got engaged. In fact we were moving house the day I got the call from my mother’s home. I was in a white van with my man and much of my worldly possessions at the time; and I couldn’t help feeling she’d done it on purpose… It was probably a stroke, the woman on the phone said.  My mother had had an episode and they had called an ambulance…

And so began the next and darker phase of the Parkinson’s path, for my mother and for all of us…

My book Peachey Letters – Love Letters to Life is dedicated to my mother who lived with Parkinsons.  There are more letters about her, along with more ‘Love Letters’ to the people, phenomena and happenings in my life as an author and coach. You can get hold of your copy here…  or else from Amazon (in both Kindle and Paperback formats) and it can be bought or ordered from ‘all good book shops’…

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