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’…

Peaches Geldof – ‘How is that bearable’?

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So many people are expressing shock and sadness at the sudden passing of Peaches Geldof – wife, mother of two, and the 25 year old daughter of Bob Geldof.

In a statement issued on the day she died, her father said: “She was the wildest, funniest, cleverest, wittiest and the most bonkers of all of us. “Writing ‘was’ destroys me afresh. What a beautiful child. How is this possible that we will not see her again? How is that bearable?”

How indeed could such a thing be bearable? It can’t be, can it? Such a senseless ending of a young life. At this point the cause of death is still undetermined, but regardless of that, I still remember hearing the news that this beautiful girl’s own mother died aged 41, leaving 4 daughters behind her. For me it makes this tragedy even more cutting and deep…

I can’t assuage the grief of those who knew and loved Peaches and I can only start on the journey of trying to reconcile what’s happened and what will happen from here; and with humility I can only really do that for myself – if these ‘workings through’ touch someone else, then that will be one tiny blessing to come from this horrible happening…

Her loved ones will go through shock, grief and pain – nothing can take away that loss or lessen that impact. I can’t comment on how any one will cope, yet these are the normal and necessary stages that have to be traveled through. It is tough to accept that sometimes we just have to go through the pain – we are so predicated to be medicated with alcohol, pain killers, anti-depressants and the like – in order to avoid life’s trials and troughs in any way we can.

But we can’t avoid them and have to allow ourselves pain and grief at times like this; for if we seek to dull them or distract ourselves, that resistance can be just as painful as what caused them. So, am I saying leave off the ‘medicants’ then? Well if they help in small measure, in the moment, then no of course not – I have used them all, god knows, at one time or another, but the thing is not to let them become the long term alternative to the pain, which will be buried somewhere, and has to work its way out, somehow – otherwise it eats away at our emotional core and can sit latent for decades until it is released or unleashed.

So what other support is available? Families and friends can be your greatest allies or foes at times like these. I have seen families draw together after such tragedies and others, torn apart. Those who grow together tend to keep it loving and mutually supportive. They simply and consciously watch out for each other. Others I have witnessed using their hurt (often unintentionally) as a weapon – they feel justified in throwing their emotional weight around, bringing up past hurts and even throwing around physical and verbal violence. So it is that often the consequences of such interactions are estrangement and divorce. So – know this, if nothing else, and seek ways where you can grow together, rather than apart.

I believe we can only live in the moment – so keep it simple, focus on what you need to do to cope, and do the things that will get you through from moment to moment, just one step at time. And where ever you are, if you can focus on doing the same for those around you, this can only support you too…

Of course coaching and counseling and other professional support can be completely invaluable at times like these. You will generally find that in the human experience, someone else has gone through such life happenings before, and there will be experts out there that can guide you through healing and coping strategies. I appreciate that not everyone wants such interventions though, yet I would always advise getting ‘educated’ about your situation. Do your research – read books, go online, seek out others who have been down the same path, too. Understand the stages to be traveled and what the learnings may be along the way. There will be a common recognition and understanding, and knowing that too, is so often, a support, to so many…

At such times in my own life, my own emotional issue is, that the lower I am, the less I want to reach out and ask for help. Recognise this about yourself and others you support, if this is true for you too. Be honest with those around you about where you are emotionally and what support you want / need, and if you are unable to articulate that, then simply tell it like it is. If they are unable to provide what you need, then you should look further, maybe for professional support. Reach out…

The thing that all bereaved people have to face, is the funeral. I remember saying when my father died, that a funeral was the last thing I needed! I faced the day though and realised that these occasions are necessary for so many reasons – to allow us to psychologically start to say good bye, and most of all to celebrate that person who was part of our life.

A funeral is the chance to celebrate their existence, celebrate their legacy, celebrate their impact on the world and upon you. Yes, of course you are allowed to weep and grieve, but always keep celebration at the centre of this ceremony. This is vital, it is the starting point for your relationship with that person from now on – that person who will be carried now in your head and heart. How can you best honour them and keep their memory a positive one? Be open and unafraid to speak of them – that may scare some people or bring up their stuff, but allow yourself here, – gently hold your ground and show the way…

Yes, you are allowed your loss too, of course. On the day of my mother’s funeral I said a very loud prayer to God that I wanted to hold it together please for my oratory speech, and if that happened, then I wouldn’t mind being a gibbering emotional wreck for the rest of the day. I wasn’t though, that day was, for me, so special, one most definitely with celebration at its heart, filled with love and recollection and of course some sorrow too.

My mother though was old, she’d ‘had her time’; but then the length of someone’s life should not take away the fact that we should celebrate what that soul has been to us – regardless of how long they have been on this earth. And despite my mother’s age, I still would have liked her to be around at my next birthday or to have seen my first book published… Yet in my mind, she contributed to these things and so many more, in the ways she influenced me, and is somehow always with me – in my DNA, in my thoughts, in our past interactions and in so many innumerable ways…

And then our lives go on… Shaped by loss and pain… Our existence altered and impacted by that which is beyond us. Can we really choose that we move on in a positive way, from such a shattering, negative happening? When it comes to matters of emotion, it is my own experience that I can certainly cast myself as a victim in the story of my life. Yes, I have played that role so many times and to be honest, will often tip into that mode still… Yet I know that if I choose – be it consciously – whether through tears, or gritted teeth or simply state my intention – that I am going to move forward with this, then move I will. If I decide to learn from it, and honour that person in the best way I can, then setting my intention may just be enough, for this moment. Then I will state it again and then I will choose to get the strength and support, however slowly, to get me through the next moments, then hours, and then what ever will be…

Will a happening such as this change lives and hearts for ever? Yes. Is it awful, sad and shocking? Yes. Is it painful beyond reason and unfair? Yes. Will you ever get over it? I don’t know…

Yet we can, on some level choose our legacy from life’s happenings and if you allow yourself to believe that, then this is the first, small step forward, and from there you can take another slow step, and then another and so it is that you are moving forward…

 

~ By Sandra Peachey. With love and trust.

Dedicated to all of those who have loved and lost, and somehow, loved and gained.