things that go bump in the day 2

my own WWW – Wanderings With Wayne

And continuing with the intro…….

My thinking behind this bit about me could do with a little bit of explaining. I am not going to be telling you about me and my history because of some ego trip nor is it, I hope, due to some kind of vanity nor because of some wish to dwell in the past (shouldn’t have got alzheimer’s then!) as that is not my style. I have always been a pretty private person and found it very difficult to talk about myself particularly where it comes to thoughts and feelings but this has left me, due to my own failings in this area, closed off from others as they have felt and often have been, shut out, sometimes quite literally. I would not ask for help and even if I had the help may well have been ignored as my view would be well they don’t really know me. Pretty obvious, I never let them get to know me. I now better understand that, as BT would say, it is good to talk and as I plummet towards a very unknown and uncertain future my need for understanding from others will grow by the day. This includes you if you stay with me on this journey.

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So why am I going to go on about the past and present history of me, well, I strongly believe that these diseases have begun to slowly change my ways, my character, my personality. This has happened to such an extent already that I am often surprised by how I now react to things and often wonder who this stranger is that now shares my body. He looks much like me but is often not very well shaven and really does not quite act in the way I have been taught is acceptable. The really annoying bit about it is that he seems to think it is his body and I am the stranger and as each day goes by I am beginning to think he is right!!!!

Ok so who and what I am now will become more and more apparent as time and text moves on but I am currently 60 so still a spring chicken really but not always as full of the joys of spring as I once was or would like to be. Likewise the who I shall become is as yet unclear but if you read some of the ‘laugh out loud’ stories and the nightmare moments accounts that our long suffering carers on here post, you can quickly get some idea of where we are sadly all going. We are all individuals travelling along different routes using various individual methods at our own independent speeds, but all the paths seem to lead to the same place and it is one that none of us want to go. It is what it is so just try and enjoy as much of the ride as you can.

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A very brief history… I was an outdoor type, a leader, spokesperson, outgoing, confident, happy, proud, loving, caring, thoughtful, sociable, sensible, fun-loving, adventurous, detailed and organised boy/man. Had successful careers in sales, IT then teaching. Not so successful family histories with 2 divorces then a long term non marriage. A poor relationship with my only sibling, a brother and had 3 children over the 2 marriages, 1 boy then 2 girls. Things started going very wrong from 2000 when my mum was finally diagnosed with alzheimer’s and having mini strokes. My brother did not really want to know as my step dad was not really up to it so I did my best. Not good enough though. Work suffered, mum suffered, I suffered and then early 2004 she broke both hips and had to go from hospital into a home. Brother helped not at all!! Recognise the picture anyone? Mid 2004 I had a stress related (high blood pressure) heart attack and was away from work 7 months. Then things gathered pace and so will I. 2005 back to work then mum died, I developed hypothyroidism and kept going to sleep every 6 hours. 2006 out of work, 2007 son died, 2008 and on started having noticeable memory problems, sleep walking, missing conversations, struggling with words, remembering conversations that had not taken place, writing lists that could not be deciphered the next day, not remembering yesterday evenings meal or tv etc and panic attacks. Various tests and 15 months of counselling did very little but it kept being put down to stress and high blood pressure. Memory tests every 6 months seemed to just keep showing that I was ‘borderline’. All these things had been noticed by me, family, employers, potential employers but doctors etc would not be convinced. Each step forward or down depending on how you look, was so small and slow that it was not obvious that the path was down.

2015 and now separated from what was left of by now very small family and I find myself in Kent and suddenly being taken seriously. Still had some people saying ‘well it’s stress, you had some bad times’ but on the whole family and experts here were listening. Tests were done, family spoken to, MRI done and finally after 7 years, in January 2016 I was diagnosed with vascular dementia and alzheimer’s. Strangely for a short while I was over the moon, at last an answer, a reason, progress. I was put on Donepizil 5mg then quickly up to 10mg. The implications soon started to kick in and I became scared and full of questions, most of which are only just beginning to clear in my mind. We have a really good support system here in the Medway area of Kent and that is made abundantly clear by reading some of the frustrating stories from other parts of the country and world. Even here though, I often feel alone, scared and confused about what should I be doing, who should I be seeing, what now, what next but those things will hopefully become clearer as time moves on.

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Until then, thank you to you all at TALKING POINT. You are all a great source of information, help, guidance, encouragement, support and mostly HOPE. Long may it continue, unlike me who will now shut up!

Catch ya soon

Wayne X