2nd week of May,2016
Anxiously,
I went to Tuesday CST early to catch the Thursday leader and
explained that I was sorry for swearing, but not sorry for my walkout
last week. Told her off about not controlling the group properly. She
did try to excuse this lack of formal control, saying it was due to
the group having dementia but, sorry, that is not good enough for me.
I go there to get professional assistance and stimulation, not get my
ears massacred by gossip. Told the Tuesday leader about last Thursday
as well, while Mrs. Chatterbox was on her phone trying to paralyse
some other victim’s ear. The facilitator did a good job of subduing
her verbally and it was a most enjoyable morning, so I might, only
might, rethink about going again on Thursday. To exact their revenge,
at the end of the morning I was told off about using the term
‘sufferer’ as sufferer is now called ‘living with dementia’. Me, well
I say no to that. I would evict or divorce the dementia if I just
lived with it. I suffer it, not live with it. Did a Talking Point
post about it and got understanding, support and encouragement from
those who really matter, the ones who truly deal with it on a
minute-by-minute basis every day.

A
blog follower on the Tumblr side, who is, thankfully, not involved
with our dementia world on either side of the coin (not carer, not
sufferer; just worrier), has mentioned that the graphics in the
Tumblr blog are very graphic. Admittedly, although they do give an
insight into what is going on in my mind at the time, by being a bit
psycho and technicolour, they are also liable to give you ‘brain
damage’ without the need for expensive hallucinogenic substances. I
do not wish to inflict damage on anyone, but also do not wish to
remove the images of my mental states that those graphics so
admirably put across. I will, therefore, to protect my TP friends,
always try and remember to post up a pure (or maybe not so pure) text
version in TP and have a link to the mad Tumblr version. The only
drawback of the non graphical version is that you do not get to see
pictures. The newest blog, following this post and titled ‘1st
Weekend
of May, 2016’, has pictures of the areas I walked this last weekend;
and without the pictures to portray the beauty, it is hard to imagine
why I, at times, put up with physical and mental discomfort, just to
go on the walks.

Raining
and miserable on Wednesday morning but I set off to go on a new, much
longer and demanding morning walk. Got soaked waiting for the bus but
the humidity made the rain almost refreshing. I was thinking that
stripping off and showering seemed a great idea but not sure a bus
stop is the best place. Maybe as a dementia sufferer I could get away
with it. Hummmmmm!!!

Some
familiar, friendly faces on the walk and some new friendly faces that
will soon become new victims. Much needed cuppa at the end, after
about one hour walking in the rain. No singing was heard!

Tried
some typing in/on TP when I got back, but eyes going blurry and
feeling incredibly tired, so sleep in order while my brain does its
rewire thingy. Guess a few more caterpillars in my head have just
been destroyed. Private joke there, as I often unknowingly use the
word caterpillar in conversation when trying to explain about the
mini strokes destroying capillaries in my brain.

Downloaded
and watched the Horizon program about possible Alzheimer’s cures but
was annoyed that it gave false hope, especially for those dealing
with it now. So ended Wednesday, on a low.

The
odd day, that Wednesday is, was followed by another of those
uncontrollable emotional days. It’s just not fair! After a week of
torment trying to decide on whether or not to attend the Thursday CST
after last week’s debacle, I finally decided last night, after the
Horizon programme, that I should do the right thing and attend. It
had been a really tough choice as the alternative was to go on a
lovely new walk that I know is attended by 3 others with dementia and
could have been good; but that will keep for now. The choice had been
aided by the fact that I could not work out, in my confused reduced
view state, how to get there on time or what bus to get, where it
stopped etc.; so gave in. The day started well as I was on a high.
Did not know why, but it felt good. Found myself singing as I walked
along listening to my MP3 player. No odd looks; so either I was not
singing too loud or the locals are getting used to the village idiot
now. Enjoyed the bus ride and chatted with another passenger. Got to
the therapy group early and sat reading my copy of the Alzheimer’s
Society mag. Got upset and found myself teary and lump in throat
reading other people’s accounts. Picked up spirits again when others
arrived and was told a joke.

The
session began on a high, as one of the group asked about the Horizon
show last night. We WERE having a good, informative and ‘stimulating’
conversation about it, but the bad (and getting worse) facilitator
stopped us to talk about the weather, where we are, the date, the
season etc., but then stopped that to then listen to Mrs. Chatterbox
tell us all about burning her leg on the oven, rolling up a trouser
leg to show us, then talking about historic, strappy summer frocks.
All of which we’d endured, politely, on Tuesday. I raised my hand
and waited for an acknowledgment; then asked why our good
conversation had been crushed, to talk about pointless weather, which
then got stopped to listen to even more pointless drivel. Yes, I
could have phrased things very much better, but I was annoyed that
they had reneged on the assurances given Tuesday, to me. I asked who
made the priority list of what things matter in a cognitive
stimulation therapy group. The facilitator told me that ‘she’ wanted
to hear about the leg and we could go back to other things later.

I
walked out again and, this time, there will be no return; not even
next Tuesday, as their inability to pass on a simple message about
the problem has let me, and others, down, so they are equally to
blame. The ridiculous emotions again kicked in and I found myself
crying on a bench in the park. Disappointed in me for making such a
wrong choice, frustration at them for allowing it to happen and going
back on their promise to try and control things (maybe they expected
that because I have dementia I would have forgotten by now). I am
also angry at myself for being so easily broken today. The harder I
fight, the harder ‘IT’ fights back and today it is winning. I just
want to give in and rest, but I won’t!

Had
an Ok night. Not good, and a long way short of the sort of sleep we
are supposed to get to ‘flush’ the brain out. A couple of points
brush through the void that is my brain when I think of it being
‘flushed’. One is the worry that, at times, it feels that good stuff
gets ‘flushed’ out as well, and the other is that as Alzheimer’s eats
my brain cells and my physical brain mass gets smaller, how long will
it be before that flush sends what’s left out my ear and onto the
pillow? Yuck!

Still
having mini stroke things going on in there, as they have been since
about Wednesday lunchtime. My eyesight went weird while walking this
morning but, as always on a Friday morning, I was in great supportive
company so got by. The fellow walkers, upon hearing of my rather
negative departure from the CST group, have already offered me 3
alternatives for the Tuesday mornings and 2 for Thursdays. I think my
cognitive processes will get well and truly stimulated. I do try to
describe things as they are and hope my accounts of what goes on are
truthful and accurate even if a bit (a tiny bit) biased in my favour,
but they are how I see and feel them. TP posters helped get my day
back on track when 1 encouraged (ordered) ‘me’ to allow Dave to
drag me out and find somewhere (pub garden) nice to unwind, and
another TP poster made me re-read something I had blogged, which
reinforced my usual view of life and the people in it. I had
forgotten to practice what I preach and accept everyone and
everything ‘warts and all’, even facilitators. I have taken that back
on board and am happy with my world again.

Just
after typing that last remark, the phone rang and it was one of the
facilitators from the Thursday group; thankfully not the one I do not
get on with, and we spoke for 15 minutes about the group, the
members, the facilitators and how things could and should change. She
also tried hard to encourage me to rethink my position about not
going any more. Unlikely at this moment, but who knows?

To
end the day on a real high (not!) I decided to open and struggle to
read a ‘brown envelope’ letter that came today. It took a while to
decipher, as my sight by that time was next to none, just fuzzy
waves. It informed me that I do not qualify for any PIP points as I
am healthy enough to lead a mostly normal life. Well thank goodness
for that. I had been beginning to worry that I was sick or something.
I currently take 16 pills a day, cannot walk properly, cannot breath
properly, cannot see properly, do not respond to alarms going off,
cannot plan a bus journey, cannot read my shopping list, do not
remember to get things out of the freezer for dinner, cannot say a
whole sentence without a wrong word or hesitation but thankfully I am
ok enough to lead a normal life. Wow what a relief!

Thankfully,
the rest of the weekend I managed to hide from twists of fate and the
whims of the world, but for once did not resort to hiding in bed.
Maybe the powers that be had finally had enough of torturing me for
one week and went to pick on some other poor unsuspecting bugger.
Hope it was not you!

Slept
ok on Friday night, which was followed by a restful Saturday morning
getting ready for 3 hours walking in the afternoon. Only a few of us
were there as the core of the group were away on a long weekend
walking holiday in Eastbourne. I had been asked several times to
attend, but my anxiety over new places with new people, so far from
home, had got the better of me. Regretting it now, but after a week
like this one maybe I am better near home? So just a few of us, very
mixed weather, a nice walk and coffees at a garden centre called
‘Dobbies’ afterwards. Due to the nice person I walked with being a
member, the coffee was free!

The
rest of the weekend was a pretty chilled affair. Working on the new
‘chewtor’ web site so that I can host the blogs and other stuff
myself. It will also give me somewhere to create and store the life
book I have started working on. I am doing this as a ‘cognitive
stimulation’ and ‘recollection stimulation’ method. Writing about dim
distant bits of life and collecting online pictures to go with them,
is a really great method of keeping dementia sufferers connected (and
entertained for hours on end!!!!) as they relive and discuss the
memories. I hope it works.

Thanks
so much for sticking with me through a difficult week

Wayne

The
next blog post will only be on the new site but I will post clear
links to it.