that go bump in the day 53

all and just a very quick and silly note, before we begin, about this
blog entry.

did actually manage to finish this one a little while ago, and as per
usual I passed it across to Dave for final edit and correction.
Having put it up on our shared ‘cloud’ space, I promptly forgot
all about it and got on with living. It was not until I finally sat
down to work on the December one and needed to check on the blog
number for that one, that I noticed no issue had been posted about
November. I had forgotten to tell Dave it was ready and then not
chased to see if he had done his editing????? Time being so late now
I have grabbed it back and posted as is. Hope there are not toooooo
many grandmar errors or non politically correct comments. If so, well
‘who gives a sh*t’ anyway. See ya and belatedly hope you had a
wicked Christmas……. If not, well reread the previous comment ha
ha! Wayne xx

(05/11 – 30/11)

breezed in on me while I was hanging around on my own to watch a free
bonfire and firework display and November had a very brrr edge to it.
Although the month felt like it started cold, well cold compared with
so much of the rest of this baffling year, this one, like all the
other months, got confused as to what season it is supposed to be. we
had chilly and warm, wet and dry, still and gale force, quiet and
noisy and I am quite sure that if I had watched closely and long
enough I could have seen autumn leaves climbing onto the trees????

why was I at fireworks on my own. Well to cut a very long story into
just a long story (Wayne’s favourite type ) I was not supposed to be
on my own as according to the plans that had been discussed, not only
was Dave going to be around but others from the earlier Saturday
afternoon walk were due to be meeting up AND I hoped to also find
where Lorraine and her group were hidden in the throng. Not being
great with crowds myself it had made good sense to link up with as
many others as was possible. All those plans went up in smoke with
the bonfire. Dave, having finished his bowls match, headed for the
park but not being happy with the thousands of people bustling
around, and being a bit cold, headed for the sanctuary of home. Hang
on a minute, isn’t it supposed to be me with the problem of crowds,
must be catching lol. We spoke on the phone where he let me in on the
new plan that he was not coming. I next tried to text the others
without much better success. Lorraine was still outside with some of
her group but awaiting others, and the afternoon walkers were tucked
up in a nice warm pub. They did venture out at some point but we were
unable to locate each other in the masses. So the only one with an
effective tracker system which would have enabled us to meet up in
the darkness and huge crowd, was Dave, at home, on his laptop. I
really need to get some others onto my free system which allows GPS
coordinates to be sent that are accurate within 1 square metre. Good
job I didn’t get lost but in that big crowd it was almost impossible
to move never mind wander off ha ha.

the Thursday I was lucky enough and honoured to be given the
opportunity to talk with the Medway Dementia Action Alliance. It was
a pretty big deal to be mixing with representatives of about 20 local
businesses and getting to tell them about me, my journey with
dementia and my views of how things could improve locally for people
with dementia. It was as always a bit intimidating talking about me
rather than the dementia but somehow we all survived with a few
laughs along the way. This, as usual, is a video of me spouting.
After the event I was asked if some of my words could be used on the
web site as a quote and obviously, hungry for fame, I agreed thinking
it was for the local DAA. Wrong, my words went up on the national
site (here) and were later seen by the City of Bath, who are also
striving to be more dementia friendly, and thanked me for my
inspiration. Thank you Medway and Bath, together we will all make it
happen for us all.

the Friday I had a very positive meeting with Ash to discuss what I
would be talking about at the care home training session coming up on
Tuesday. He really is either very trusting or very foolish, or both,
as he always gives me total free reign over it. One day it will
backfire I am quite sure!!!

peer group and again a short discussion came up about trackers v
locators and the like and again discussions about my free tracker not
being good when it does more, much more than the £25 pcm option. I
really do not understand why there is even a question over it but
would love chance, while still able, to show other PWD and/or carers
how to set up these free systems on the cheapest smartphone with £5
pcm contract.

it was Tuesday 15th
we were off to Mayflower care home to do the second of a two day
training course. Ash does day one and after he has softened up the
crowd, I get to do day two and have some fun. The main purpose was to
show that ‘challenging behaviour’ may well have nothing to do with
the dementia but is driven by a lack of awareness from the carers
involved and how important it is to try and see any action from the
perspective of the person with dementia. Very difficult at times but
usually worth the effort as it can and does save an awful lot of
stressful time. It went extremely well with a great bunch of very
attentive and eager to listen people. The area where we carried out
the training seemed to be at a basement level, about as far from the
top floor as we could be put. The relevance of this statement is that
the top floor at this home is used for the most ‘challenging’
residents, a distinction that I was not overly impressed by but that
is after all why we were there, to change or at least try to
challenge that view. Mayflower video, sorry peeps, yawn!

of note happened during the rest of that week until the Sunday when a
return trip to the cinema was on the cards. We headed out on the very
crowded bus, Christmas is definitely getting closer as confirmed by
the crowds, the music and the dip in temperature ha ha, but after
arriving at the huge shopping centre plans changed. It was such a
buzz waltzing around with the crowds that the cinema did not seem so
attractive and the fantastic beasts wandering the halls were much
more interesting than the fantastic beasts about to be shown on the
screen, so we shopped. It was brill not going to the plan but the
place was very busy and I quickly became eyesore and distracted. My
eyes were constantly on high speed scan and got tired then sore,
which in turn started a headache. Trying to keep up with the constant
random movements in the crowd had my mind processing too fast so I
started to feel confused and then got anxious. Breaking often from
the waves of people coming at us and assaulting my vision did give
respite but not for long and I tired physically, mentally and
emotions were starting to shred as I desperately tried holding my
tongue and not verbalising the annoyance I felt at inconsiderate
others. Smashing me about with your heavy shopping bags of goodies,
then blaming me because I was not quick enough to leap out of the
way, does very little for anyone’s Christmas spirit. My vision
continued to blur and the headache increased until I had no choice
but admit defeat and seek sanctuary on another overcrowded bus for
the journey home.
How come during the summer I spend loads of time on
almost empty double decker buses and then when the crowds start to
appear the bus company sends a single decker????
Monday morning and I
was still eye sore with a scatty mind and unable to focus, vision or
mind so hid at home. By Tuesday and still tired, I went out to
collect my repeat prescription and decided to get a GP appointment
for asap. Ha ha I can now hear you saying but at the time it seemed a
reasonable idea to me. See, told you I was suffering a scatty mind. I
tried many times to call the surgery, no answer, ever. Came up with a
super plan of getting the appointments app on my phone but that hit a
wall when it insisted I have to input a code after I register at the
surgery to use online appointment systems. OK, no worries, I go to
the surgery and get the sheet of paper with the codes I need. Stupid
idiot I am, should have sorted the appointment whilst I was there,
but no, now I am heart set on using this appointment app. The app
worked OK but no good as it told me that there were no appointments
available for the next 4 weeks that the system offers. Off I go,
again, to the surgery, explain about having dementia and problems
with understanding some systems, problems with the phone not being
answered, problems with the app and the lovely receptionist wrote me
down another phone line to try which they apparently always answer.
Yeah right! Again stupid me not only believes this but walks away
again without booking the appointment whilst there, doh! As you can
probably guess the new private number is also still no good as they
do not answer. Finally I get it into my thick head that going there
and staying until I get an appointment date is the answer. Not
exactly full of hope and now with a headache that made the original
need for the appointment seem a joy, I go there and come away with an
appointment for the end of the week, only 4 days away. How that works
when there were no appointments for the next 4 weeks I have no clue.
HELP PLEASE!!! I know that I have dementia but surely it is the world
that is mad, not me?

all of these things have been going on, the radio interview from the
awards ceremony that I attended went out a couple of times as a
prelude to me going into the studio for a live session.

feeling more and more tired and distracted I was also waking at silly
o’clock in the morning on top of keeping waking during the night with
leg cramps. The neighbours downstairs must have thought I had gone
even more mad when I am leaping out of bed and banging my leg around
and stamping on the floor in agony at 2 am. Sorry peeps! One night I
was wide awake by 3, my arms were out of the quilt and freezing but
the rest of me was sweating profusely. Not a great sensation and I do
not know why. During the next day I feel odd but OK until when on the
phone to someone, on their mobile, and they were out on their drive
raking fallen leaves. The sound through the phones hurt my ears, it
was an incredibly loud piercing sound as the rake scrapped across
concrete or tarmac but they could hardly notice. It was my end,
somehow the vibrations or whatever were magnified and it hurt me.
Sensory overload caused by lack of sleep? Maybe my eyes almost
shutting down had caused the ears to increase their workload? Who
knows, certainly not I but was that odd occurrence during the night
the cause of waking or a symptom of what may be going on. By the time
the GP appointment finally arrived the situation had subsided except
the maddening and painful cramps so I now have yet another tablet to
take daily trying to alleviate that symptom of the donepezil. Such
fun this dementia lark.

next week we had a wonderful evening presentation of dementia
awareness to members of the general public that wanted a Q&A
session about dementia and also in attendance were some
representative cinema industry peeps who were particularly interested
in talking about how they could help PWD go back to the cinema. It
was a very interesting evening which not only prompted some deep
questions but also inspired the cinema peeps to try some changes.
Result. Not to that cinema, but a few days later we went to the
‘silver screen’ showing for ‘older’ clientele and saw a brilliant
film about the Chelsea flower show called ‘dare to be wild’. Going to
the matinee performance and getting the extra large, extra legroom
seats made such a difference and I now definitely want to go more
often. Does it sound a bit old person to say it is nicer, quieter,
calmer and more civilised going at that time of day…….. and we
get not only cheap tickets but a cuppa and a biscuit thrown in for
free……. bring it on!

bring on next month as well with live radio interview, trips to
London, good and not quite so good, mind numbing new phone problems,
loads of Xmas bashes, web site meetings, cable TV installation and oh
yeah, Christmas.
Have a good one and I’ll see ya soon.