continuing with the intro…….

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.

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!!!!

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.

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.

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.

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!

ya soon