The
ups and downs of May’s 2nd week, 2016

Anxiously,
I went to Tuesday CST early to catch the Thursday leader and
explained that I was sorry to swear but not sorry for walk out last
week. Told her off about not controlling the group properly. She did
try to excuse this lack of formal control due to the group have
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
victims ear. The facilitator did a good job of subduing her verbally
and it was a most enjoyable morning so I might, only might, re-think
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. Did a Talking Point post about it and got
understanding, support and encouragement from those that really
matter, the ones truly dealing with it on a minute by minute basis
every day.

A
blog follower on the Tumblr side that is thankfully not involved with
our dementia world on either side of the coin (carer or sufferer just
worrier), has mentioned that the graphics in the Tumblr one are very
graphic. Although they do give an insight into what is going on in my
mind at the time by being a bit psycho and techni-colour, they are
also liable to give you ‘brain damage’ without the need for expensive
hallucinogenic substances.

I
do not wish to inflict damage on any one 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 1 hour walking in the rain. No singing was heard,

but it is another rather lovely place to be out walking.

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 it’s
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 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 weeks 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 peoples accounts. Picked up spirits
again when other 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 &
‘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
trouser leg to show us, then talking about historic, strappy summer
frocks. All of which we endured, politely, on Tuesday. I raised my
hand and waited until acknowledged 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 listen
about the leg and we could go back to other things later. Brain melt
time!!!

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 will get well and truly stimulated. I do try to put things
as they are and hope my accounts of what goes on are truthful and
accurate even if a bit (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 who 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 1 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

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