1st
week of May, 2016

All
joking aside, well, most of it anyway.

I
have put the humour cells away in a drawer so that they can have a
rest as I do not want to risk wearing them out too soon so this post
is an attempt at being at least a bit serious. It definitely risks
therefore being boring but unless I try some different approaches to
putting my thoughts and feelings across I will never find out what
works and what doesn’t. Any how on with the show.

Over
a few days I have read several posts and blogs that have shaken me to
the core by reminding me of some earlier thoughts and concerns I had
regarding possible progression of this nasty beast called dementia
and it’s effects on me, my character and my life. Because these blogs
and posts have dragged these past issues right back into the current
front of my mind, I have decided to write about my quite extreme
concerns and worries here, now. So here goes.

When
I am in my troubled space just beyond the edge of the real world,
that place I visited for many hours during a couple of days last
week, I am still able to know and feel my views, my frustration, my
confusion of what is happening to me in this off kilter world. I am
trapped in it for a while and I know I am trapped, I feel I am
trapped but cannot quite accept it nor work out what to do about it.
Just going with the flow and waiting until it wears off would seem to
make sense but it is not sense that I can see at that moment so I
just try to fight my way out. This used to work but now seems to work
less and less only adding to the frustration. I have to abide the
torment of it as I am no longer capable, at that moment, in that
place, to find a way out, to ask for a way out nor to even get help
in that place.

The
world, not being properly equipped to deal with a dementia sufferer,
creates a nightmarish torturous place for the dementia sufferer, no
longer equipped to deal with the world!!

I
cannot, any more than anyone else, know what someone in the later
stages of dementia, goes through in their conscious mind when they
have lost all communication skills. My sincerest hope is that the
‘knowing and feelings’ of the horrendous predicaments I now sometimes
get into, in the early stages of dementia, will, as time goes quickly
on and the condition worsens, vanish with all other memories, and I
will exist in that nasty place in a state of blissful oblivion. The
books, research papers, blogs, posts and articles I read (yes I am my
own worst enemy) about displays of anger, frustration, violence,
destruction, escapology etc. do seem to point towards the view that
the PWD does not enjoy complete oblivion but instead lives somewhere
between perpetual anguish and exhaustion.

A
nice comforting future to look forward to…………….

[picture
fades into waves and clouds – subtitle text says ’20 years from
now’]

Nice,
kind old guy Wayne, don’t really know anything much about him or his
past as he never gets visitors and there has never been any family
contact. He never says anything, does not seem able to speak and he
just sits still, doesn’t hardly fidget any more but the eyes are
alive and sparkle much of the time so something is going on in there.
He is in a beautiful care home perched on the edge of the countryside
in a lovely tree lined garden. It is winter, the trees are bold bare
and stark, waving in the cold biting wind unable to shelter from the
stinging rain constantly falling from the grey bleak cloudy sky.
Inside it is warm and cosy with a hubbub of constant activity and
background noise from talking, telephones, radio, TV, vacuum
cleaners, cooking & cleaning with the chinking and clinking
sounds that go with these activities.

A
very nice and helpful young man has lowered me into this very soft
armchair. It is a little too soft and does not support my aching back
and the angle at which it reclines does little to help the
uncomfortable position but does make it a struggle to try and lean
forward or change position. The TV is on right in front of me but it
is so loud. The others here must be partially deaf to need it so loud
but I now have overly sensitive hearing. For many years I have been
unable to attend cinema or things like it as the sound just crackles
and distorts which means I cannot make out the words any more. Here
it is so loud my ears almost bleed. The high speed flickering light
from the TV disturbs my eyes and I have to squint all the time and
look at an angle to avoid seeing the screen. I cannot make any sense
of the rapidly changing pictures so why not just get rid of the
stupid thing?

My
back hurts so much, if I could move just a bit, just enough to
relieve it, maybe turn my arthritic bones enough to escape the TV and
admire the trees outside. Just a bit, it hurts but wow that’s better.
I have managed to finally lean over and can see the trees. Oh! those
magnificent trees. I used to spend all my time outside, all weathers,
walking and enjoying the sights the sounds the smells the fresh air.
Here comes that nice young man again, maybe he will take me for a
quick walk outside so that I can feel the cool wind and refreshing
rain on my burning flesh and enjoy the aroma of the rain soaked earth
rather than that unpleasant background odour that seems to live here.

Ouch!
Ouch! Ouch! it hurts as he half lifts and half drags me back into an
upright position. His grip hurts as I have so little actual flesh
left between skin and bone. The jolt of pain makes me grip him
tightly. I try hard to tell him about outside but even shouting, all
that happens is I spray spittle around rather than words! Oh crickey!
now I am back in my starting position and my back, my ears, my eyes
are all under attack again and even worse the nice guy has stopped
smiling. He is talking with his work mate and it appears that someone
has upset him. Apparently some miserable old sod pinches and spits at
him whenever he tries to do something nice to help. I wonder who that
is, ungrateful so and so. There does seem to be rather a lot of odd
characters at this hotel though. Old and infirm, smelly, stupid,
clumsy, keeping on shouting out, don’t know what’s up with them? The
waiters and waitresses do their best, constantly running around. Some
people are just never satisfied. Never mind, I won’t have to put up
with it much longer then I can go home. They just have to sort out my
front door again. Every time I go out my school chums go round and
paint the front door a different colour and sometimes even change the
blooming lock so my key won’t fit. As if I don’t have enough trouble
with them keeping on moving the shops every time I turn my back, and
as for my mum, well she keeps going out while I’m in bed or at school
then I don’t know where she has gone. I spent all day yesterday, I
think it was yesterday, well whenever, I spent the whole day walking
around all the places that I can remember that she goes to but still
couldn’t find her. Had to get a lift home from a policeman in the end
as I had managed to get so far from home. And guess what, even the
policeman was confused and dropped me off here at the hotel instead
of at home. Well if my back’s up to it I’ll find my own way home
after lunch, lunch yeah, I hope it’s not that baby food kind of stew
again …………

[picture
fades into waves and clouds – subtitle text says ‘back to the
present’]

Just
as I said “A nice comforting future to look forward to”.

I
am absolutely certain that other people, sufferers and carers, have
worse things to contend with, worse things on their minds and
potentially worse future prospects than I have but I cannot write
about those, only mine. If others find that this picture is a long
way short of capturing their experience I really would be more than
happy to hear from them and get a blow by blow accurate account. I do
not want just a list of moans and struggles but the thoughts and
feelings around what caused the moans and struggles. The picture of
me being still mentally functional, able to think, to feel, to know,
to realise what I can no longer do and suffer accordingly, but not be
physically able to manage myself or move, coupled with not having the
ability to communicate is a living nightmare that only changes when
it gets worse. I sincerely hope that as my condition worsens my
capability to comprehend and feel it’s effects diminish, fast!

Just
having a bad time at the moment I guess. Will be back on track, on
song and into the normal happy outlook blog soon.

Wayne