April 2016

that goes on & on & on & …………..

have started to try and write this up on Sunday 24th
April, 2016 but I kind of know already that it will not get posted
for at least a couple of days. I am hoping, maybe foolishly, that
those couple of days will give me the time to clamber out of my
current pit of despair, then edit this into something resembling my
blog rather than a doomsday book which is how things feel at the
moment. Maybe I will read back these notes and make the correct
decision which is to leave as is because that is the true story
rather than change the words when I feel ‘good’ and create a nice

how, this is now and although I really really do not feel like
writing I need to. Already I am having major trouble trying to recall
any details of last Friday so if I do not try and squeeze a few words
out of mind now, they will be gone and all you will get is an empty
page. Lovely and clean and fresh to look at but pretty useless if you
want to read a blog but then again maybe an empty page IS the true
reflection of my mind at the moment!!!!

went to my usual Friday morning walk and alarm bells sounded a bit in
my head when asked if I was ok. One of the women has right since the
beginning been really good to me, been interested in hearing my story
and always greets me with the warmest of smiles and a ‘how are you
today?’ This time was no exception but instead of how are you it was
are you ok. Not much different but enough to show she was noticing
something amiss. Several times on the walk, and we do not walk
together as she likes to be a front runner and I prefer the safety of
the middle ground, she hung back and checked in with me. I knew
within myself that things were not quite right but had no idea it was
noticeable on the outside. Apart from those things I remember nothing
of the hour long walk, nor the route, who I walked with, who I talked
to or at nor the next hour that I spent presumably talking with or at
others in the library.

I do reread and rewrite this then I apologise for it being so flat
and boring. I am trying to inject something (not sure what) but my
usual humour syringe appears to be empty and I have no clues as to
where I can hunt down a refill.

some unknown and unfathomable reason I do remember leaving the
library at just past midday but then I just get another hour and a
half of nothing until I enter the dementia memory cafe at 13:40. If
anyone reading this, that has seen my picture on here and can
remember seeing me ‘wandering’ (sarcastic ha ha, more on that later),
during this spell on Friday, please let me know and help fill in some

a warm welcome is mostly all I remember but a few odds and ends did
stand out but not the details of them. I spent a great amount of time
talking with another sufferer and his carer, I waved to another
couple that I usually sit with, I noticed that the carer who kindly
makes phone calls for me, and her dad were not there and I spoke a
bit with John who runs the place about the dementia fair from last
weekend and how it had taken me the whole week to recover. Even now I
have obviously NOT recovered but it did not strike me as so then.
Why? How come now today I can remember the feel of how tired I was
and yet then at the time I did not know how tired I was? Where is the
sense in that if there is any! Another big thing that do remember but
have little detail for is that I met an Alzheimer’s Society employee
that runs a peer group of 12 special sufferers that get together to
discuss stuff and I have been asked to join. Our local award winning
PWD is one of the group so I will be in rather special company but do
not recall what we spoke about. She did mention that another A.S.
Employee thinks that she spotted me during the week but she was not
totally sure as we had only been introduced the once last weekend.
Still nice for me to think that after 1 meeting I impressed enough
that she remembered me during the week. I just wish that I could
impress me enough so that I remembered me during the week!!!! Vicky
also mentioned about my emails to the dementia alliance group and
that they are contacting the powers that be at my CST group. Oh dear,
have I kicked a hornets nest or what? Honest folks, I am not a
trouble maker nor do I wish to make a fuss it is just that I find it
hard to keep my trap shut when something needs to be said. As said at
the end of the last blog I will update on that state of affairs when
I go to the next CST group on Tuesday. It may well be in the next
blog or even later in this one if I do not post this until after
Tuesday and after I have vetted this.

two hours at the cafe disappeared in the same puff of smoke that had
been following me around all day and still feels to be hanging around
nearby now. I got on a new bus and made a new journey home which was
either brave or stupid. I guess that I must have made it as I
recognise here now as being home and the fun thing is that it will be
just as new and exciting next time as I don’t recall any of it.

evening seems to have been filled with very mixed feelings but sorry
to say they were all negative mixed between emotional, teary, sad,
frustrated and angry and even more sorry to say they are still
persisting very strongly now after a further 48 hours. I am normally
quite emotionally strong, quite able to remove myself from hurt and
certainly able to see the difference between personal or not. All of
these skills completely deserted me and I was blown all over the
place by any emotion that came along. Reading posts about the
troubles others had during the day really touched me deeply, far more
than usual and I felt so useless and unable to help, unable to right
their worlds, so upset that I am one of those PWD that are destroying
their lives. Then suddenly everything swung into frustration as I
sided with my kind, my PWD, and wanted to fight the good fight
against those that do not try to see deep enough, those that only see
the dementia and not person hiding, terrified inside. My mind and
body then not being content with this frustration descended further
and on into anger as I reacted, or should I say over reacted to
reading about dementia sufferers ‘wandering’. I blew and posted back
in my angry state as if the comments had been personally directed at
me. Why care? Who is being hurt? What does it matter what others
think? It’s only a word so big deal? All very sensible and logical
reactions but logical and sense had hidden away to be replaced by
sensitivity and ego, things I did not know how to deal with. Very
soon, but after some pain and tears, they were replaced by other
strange feelings of remorse and guilt. I was panic stricken, worried
that I may have attacked the people I care about most in this world
now, the carers on Talking Point, the only people that I feel
properly connected with, that I trust, that I feel care about me.
What a bloody idiot I had been. I could not sleep, my troubled mind
churning my brain into cheese, mouldy cheese at that. I got up,
started the laptop again, typed up and posted some garbled
explanation but not apology then ran off and hid for the rest of the
weekend. Everything I read, saw or heard over the weekend seemed to
stir troubled emotions and I cried at everything. I got access to
Netflix so that I could see ‘still Alice’ but had to give that up
after a very short time as it is far far too close for comfort. Not
only is it about Alzheimer’s but it is a teacher and the first signs
were ‘drying up’ in front of a class of students, exactly my story.
Her husband seemed angry at her for saying see had Alzheimer’s and
thought she was just ‘over reacting’. Exactly my story but not a
husband, thankfully, so far as I can remember. Then came the terror
that due to genetics she had given this wonderful gift to one of her
children, again my story. At this point, completely wrecked and in
such floods of tears I had to stop as I could not see any more. I
will go back and continue her journey in a few days when I am once
again the strong, remote, viewer that I normally inhabit. Apart from
that event my only other memory of the entire weekend is again crying
over the beautiful comments left by my wonderful TP friends on the
blog and my posts and here I go again getting all choked up as I
think about them while I post, be back in a minute…..

Ok I’m back.

kind of know, or at least hope, that this is all the fault of the
dementia (to think this is now who and what I am and might remain, is
even more scary than the potential future with dementia), but I not
only want it to go away but I want just a few hours of clear enough
mind so that I can put this across in some sensible way. It is
extremely confusing and scary but that does not really even scrape
the surface of a description, it goes so much deeper than that, right
into my core, it feels to be me rather than just something happening
to me!!!!!!

know we are all on a different and extremely individual journey but
why are we not treated to the same kind of respect that cancer
sufferers get and be told what kind of things to expect or how to try
and deal with the symptoms etc etc. As a young or early onset
sufferer I was told yep you’ve got it, take the pills and I’ll see
you in a year. Well thanks a bunch that really helps.

you all so much and now I better stop or I will go far too far and
say something wrong!

have made the hopefully correct decision to post this as is without
even going back to reread it. Good luck to us all.