20th
April 2016

This
week is going to be a busy 1 and next week well….

I
was so annihilated by my exploits on Saturday at the dementia fair
that as expected Sunday became nothing day. Not so expected was that
Monday showed no improvement and also rather vanished in a puff of
Sunday smoke, Tuesday came and although I felt a little more
physically ok, my mind state was still floor level and I remember
only snatches of the day. I know that a decision was made, by me,
that the bike was not the best option so I left for the CST session
early enough to get the bus. Not great as at the bus stop a couple of
unruly kids were running riot and that did not improve my state nor
mood. Luckily the bus that normally comes before my post 9.00am bus
was late so I was able to hop on that and escape from them. I dread
to think what my reaction would have been trapped on a bus with them.
I usually like kids but cannot eat more than 1 in a session, and why
are they not at school????

I
arrived at CST very early so tried, and miserably failed, to continue
my read of the Graham Stokes book ‘and still the music played’ for
the second time. I just could not focus, eyes nor mind, and despite
having only been awake for less than 2 hours, seemed to be dropping
off in the warmth. I suppose it is all part of the English disease,
the sun comes out for 5 minutes and we moan it is too hot, too dry
and what are we going to do about the water shortage? The session was
ok so far as I can remember which is not far. The main point I do
remember was that I asked how do I get much more of the technical
info like from last weeks session and how to get questions answered
about the dementia journey. They tried to help by wanting to answer a
specific question but this was not what I wanted. I need to know
who/where to get many many questions answered as they arise. I asked
1 as an example of what I meant and at least 4 others in the group
nodded and said that they suffered in that way too but were unable to
voice it as I had done. This does seem to be a common problem and it
is real tough to get answers if you cannot phrase the questions.
Thankfully I only suffer that occasionally and short term, at the
moment, but it must be a nightmare for others that are in that state
permanently. I wish that I could find a way to help more but as we
are all on individual journeys it is hard to know what questions
others may want answers to. I can only guess based upon my current
experiences which are thankfully very limited. By the time I get to
the really scary stages I will be past the point of being able to
verbalise the questions, catch 22, but possibly by that time I will
no longer care? That will be the job of my poor unsuspecting victim,
alias carer.

Anyway
they thought that they answered my main concern by giving me an
Alzheimer’s Society fact sheet. This is ok in the short term but has
so far proven to be pretty damn useless at answering the further
questions that it raised. It just sits there saying the same thing
over and over without actually telling me anything new.

I
think it has dementia!!!!!!!

We
also did a quiz trying to identify famous people, new and old, young
and old and some famous places all from photos. It was actually quite
good fun and I fell in love with Audrey Hepburn. Wow!

At
some time I must have told the other group members about how good the
Saturday event had been and they told me off for not telling them
about the event, before the event. To try and correct the situation I
mentioned about the next dementia fair being on but at the same time
as 1 of our CST sessions. At least half want to go to the show with
me so now I’ll get myself keelhauled for leading a mutiny. Maybe I
can get away with it by ‘forgetting’ I ever mentioned it and go on my
own.

After
the session and as I was bus-ing rather than cycling and despite
being wiped out, I ventured on to find the dementia cafe I was told
about on Saturday. Although a lovely place with wonderfully pleasant
staff it is not the kind of information hub I want and need but the
manageress did recognise me and called me by name as soon as I walked
in. Is being recognised by name at a place that is there for food
ok???

I
went to my Tuesday evening bowls coaching session but was very tired,
could not concentrate and was even more useless than I thought
possible thus proving last week must have been beginners luck. Much
too tired by the time I got back in home to think about typing or
posting so hit bed by 9.30 where I think someone must have been
hiding. They hit me on the head with a mallet the moment I got in bed
and out I went even more like a light than the light which remained
on all night whilst I slept!!!!!

Sometimes,
if I can find an odd spare second or three, I try to imagine how
would I fit all of life in the available hours if I did still have to
do stuff like work, family, friends, relationships, fishing, camping,
driving rather than just swanning around enjoying myself as I do now.
Not a hope seems to be the answer as I am far too busy now to even
think about it never mind do it. The next couple of days are actually
busy days even by my standards so I guess that by the time I reach
the weekend, exhaustion will be setting in again, but that’s then.
For now I will just grab life by the shirt collar, give it a good
shake and press on while I still can.

I
really do hope that you peeps get at least a bit of the same amount
of pleasure reading these blog posts as I get in writing them. Not
only does it give me a buzz to do it but when I look back, usually on
my not so grand days, it lifts me up when I see what a good time I am
having in general and an even bigger buzz when I see the comments you
kindly feedback telling me that you find my style ‘interesting’. Now
there is a word that can hide all sorts of meanings. Just how
interesting can an ordinary day be made to sound? One of the joys of
my dementia is that I often forget the detail of what I have written
so reading it back some days later is like a wonderful new
experience. I just have this horrible feeling inside me that in such
a short time from now, someone will have to read these blogs back to
me and I won’t recognise any of it nor even the person they are
about, me!

Thanks
for hanging in there again

Wayne
x