Mid
June 2016 but no summer in sight.

Went
to my Cogs club in a very positive frame of mind. Even missing my
connecting bus by 10 seconds could not faze me. I could see the bus I
wanted at the stop as I tried desperately to get off through the
crowd on my first bus. Just as I stepped off this one the other
closed its doors and pulled away! As it turned out I would have got
there far too early had I managed that one anyway, so ha! The Medway
Dementia Action Alliance co-ordinator, who
organised
the Living with dementia fair we had attended a few weeks back, was
at the Cogs club to talk with us about our hobbies and likes before
dementia got at us. This was to make a comparison with how we
presently spend our time, now that it has its wicked way with our
minds. Others talked about gardening, writing, art, walking, sports
etc. I spoke about wanting to take my bike on the bus and also the
need to learn how to cook better on a single person’s budget.

My
problem is not about turning on/off the oven or microwave; it is
based around what to buy and how to prepare the ingredients. A recipe
book is no good as I cannot always read it and cannot always follow
the instructions well enough. There was also some talk about us being
taught how to use technology by youngsters, and I got just a bit
frustrated by that idea. Nothing against youngsters, as I know from
many years of past teaching experience that they are extremely
capable. But it would take a very special breed of youngsters to have
the patience for teaching a PWD, where you need to slowly and
carefully enable the PWD to do it for themselves, not do it for them.
This means explaining over and over and then again and again! Neither
the organiser nor our facilitator seemed to get what I was saying and
thought I was having a go at youngsters.

Our
wonderful, older, volunteer seemed to get it, calming me with a
reassuring pat on the shoulder and asking if I was ok – I gave up!
Got an email from the co-ordinator the day after Cogs, telling me
that she had already scheduled a meeting with the council’s Public
Health Officer about my bike and cooking requests, although I suspect
it was not just to discuss MY problems. We shall see!

One
of our other Cogs members had asked about walking, so I told her all
about the many council health walks that are available, and even
found out where she lives. Then I wrote it all down for her with an
invite to attend the Thursday walk near her home. She did not show
up?

Our
usual cogs facilitator was ill, and not in, so we had another lovely
young woman that I remembered from the day at the dementia fair. She
had been the one who had persuaded me to attend this Cogs club,
rather than the one I had originally targeted. At the show she had
given me a ‘farewell, see you later’ hug; something I tend to
remember despite forgetting everything else – as you would! I
reminded her of this whilst telling the other group members how she
had ‘bribed me’ into coming here. She insisted that she had not given
me a hug on that day, but still gave me a new hug as I left the group
today. When I got home, Dave remembered about the hug at the dementia
fair (jealous?) AND, on looking back, I had gotten a comment from a
blog reader about ‘free hugs’ so ha!, it was not just an old man’s
dream lol.

Good
walk Thursday. My PCA friend of last week’s missed my home invite. He
tried to cover it by saying he thought it was this week but, as I had
other plans now, it will be sorted for next week. Although Lorraine
still drives she does not venture outside of home turf that much, and
so she seemed excited by the idea of us doing a bus trip to Maidstone
together. I will take her for a stroll around Mote Park if I can
persuade my fit tracker that it does in fact exist? Went with Dave to
OUR cafe for dinner that afternoon but they had no rice to go with
the curry I really wanted, so was forced to change from chicken curry
to lasagne. No real hardship, but you cannot have curry without the
rice; it is just not in the rules. Dave had to change as well due to
wanting Chilli, as the same applied with there being no rice. First
black mark against this cafe! Not only this, but it was very noisy
due to a big family coming in. Disruptive kids, and adults dragging
tables around to make one big trough (whoops sorry, eating area!).
All in all it was not a great experience, and that’s two strikes
already. Later in the evening had a chat with Dave about the
proofread of the last notes. He did not know until then just how bad
I was during last Saturday’s walk, as I ‘looked’ ok. We spoke about
new pics I had taken on the walk,

photos that I did not remember
taking. So if you see any odd pictures on the site at
www.chewtor.co.uk

and
they make no sense, please let me know as I may well not remember
taking or posting things????

Slept
so well for a change that I had to snooze the alarm four times before
I eventually got up. Could hear the rain and was not sure if wanted
to go on a walk.

As
I missed last Friday, this time I went for it. Lovely welcome from my
friends when I got to the library, and it was much noticed that I was
NOT THERE last week. Makes a change, as I was physically not there as
opposed to the often, mentally, not there. Walking was dry from the
sky but following people with umbrellas up meant getting constantly
sprayed by the wet they flicked from trees and bushes as they pushed
the brolly by. The sky made up for it by letting rip as it pounded
down while hiding in the library after the walk.

Waited
till it near enough stopped, then hurried home. Was very tired by
then and gave in to sleep for a couple of hours, which proved
worthwhile as I was then awake enough to go with Dave to bowls for
the first time in a month. Was not expecting to play, but was put in
the draw and came out to play pairs with three others I did not
really know. Partnered a lovely and skillful lady and, with a tiny bit
of help from me, we won 16-4. My first ever competitive game. It was
rather pleasing, and I did manage to score about 6 of the 16 points.
Went for KFC again afterwards. Obviously we have not learnt any
lessons from our previous visit, but hopefully have now. Dave got
rattled by staff that kept complicating the issue. We both wanted
Zinger burger and chips. Simple you would think, but no! They asked
him if we wanted them as meals. NO! Zinger burger and chips, twice,
PLEASE! Then they asked if a ‘side’ was wanted with it. NO! Zinger
burger and chips, twice, PLEASE! I would have walked out but Dave got
us our food and we left to eat on our way home rather than stay there
and eat, as had been the plan. Do you have to pass an exam in
stupidity to work in KFC or is it just the customers that are
required to be stupid? Either way I really, really hope that I do not
‘forget’ the, always negative, experiences of KFC and determine
never to go there again. I much prefer my local spicy chicken shop at
almost half the price anyway.

Being
out late on Friday evening took its toll and I was not that
interested in going on the Saturday afternoon walk. The memories of
last Saturday did nothing to convince me otherwise. If the weather is
ok I think Dave and I will do the planned walk on our own tomorrow
after visiting our cafe for Sunday roast. Had a very restful day just
watching footie, typing up notes and doing some work on the
MemoryBilia website, which I will demo at the meeting on July 6.

I,
at last, seem to be getting on with the new phone quite well. Not so
sure we are best friends yet but I do now have a reasonable
understanding of its needs. I just wish that, as a smart phone, it
would try and get a reasonable understanding of MY needs, but that
seems to be asking far too much. I can now use it for finding where I
am, where I should be, how to get there and where next. It can show
others where I am with a buddy beacon on their phone or PC. So if it,
the beacon, stays still for more than about one minute, then I must
either be in trouble or asleep, as I never stay still that long!! I
also keep notes, audio messages, take pictures and videos, use the
internet, get and send emails, use reminders and alarms, read stuff,
watch stuff, listen to stuff. I can now even use it to make telephone
calls, and usually manage to get the keyboard up when needed. All
this means is that by the end of this week I shall bite the bullet
and get my telephone number and credit transferred from my old easy
phone.

Had
an odd thought that maybe I need to query the local council intake
team about eventually moving me into supported accommodation, why do
I have to wait until I am in a bad state before I then have to move
and try to learn about somewhere completely alien to me? Surely it
makes sense to do that while I am still clearly able to cope with the
move?

On
Sunday, Dave and I did go on the planned hike that I/we missed
Saturday. After a good roast dinner at the cafe, we went to Riverside
Country Park and walked all over the place, including some parts that
I do not think are supposed to be ‘got at’ by the general public. But
then I do not think of myself as general public anyway. We ended up
doing over 10 miles which, again, confused the poor fit tracker. It
stayed on zero until we got back home then suddenly jumped to 10.3
miles, poor thing!


Apart
from being hot, bothered and tired, nothing much happened over Monday
to be worth mentioning, except I forgot my phone when I did go out.
Cannot now remember where I went, but got back to find I had missed
an invite from Lorraine to meet up with the Monday peer group
members. I am due to join this 12 strong special group when the next
vacancy arises, but there has been talk from the Alzheimer’s
Society that they may start a second group. The current peer group
members want me to join their existing team rather than any new one,
and so are involving me outside of the group in any activities. Nice
to be wanted.

Tuesday
I went on a new walk and forgot to take my phone again. This has
convinced me that I will definitely go over to the smartphone after
the walk Thursday, providing I remember to take the blooming thing
with me then! If I then still insist on forgetting to take my phone
after the switch over, I really will be lost!!!!

The
walk, people and surroundings were fine, and we mostly avoided
streets. Which was nice, especially as I am not doing too well on
concentration at the moment, which makes roads a danger. A couple of
the women were really impressed by how open I am about having
dementia, but also said that if I hadn’t told them they would not
have known. This is exactly why I am so open about it, as I need
those around me to know so that I am protected. But just as was
proven on the dramatic Saturday recently, it easily gets forgotten or
overlooked and I then have to find ways to deal with the fallout.
Needing to get away promptly after this walk, I used the smartphone
to track down what bus, from where, at what time and making what
connections would get me to the afternoon appointment at the dementia
cafe. The plan failed at the first hurdle because I got on the first
bus that had my first destination written on the front. It was a
lovely journey via the scenic route but went here, there and
everywhere, and I was worried that I would then miss connections. I
made it ok, but next time will accept that the phone is smarter than
I now am, and get on the bus it tells me!

As always the
afternoon at the dementia cafe was fun and informative, swapping
notes on daily life and survival, but I was far from ‘with it’.

Suddenly
a whole other week has gone by, so I must be slowly getting a bit
better at reducing how much I go on and on about things. It would
have taken two blogs to cover a whole week not so long ago. Maybe I
am forgetting most of what goes on so do not write it in??? COGS club
on Wednesday was good as ever but I was so hot and so tired that I
spent the time drifting in and out of consciousness. This was
annoying as we spent the day on childhood topics, but what I did take
in was really fun and pleasing. As I am doing background notes for
the life-book I have been trawling up stuff from my childhood, and
most of it should be left untrawled as it is not ‘nice’. But it did
turn me into who/what I am today………… it must have been really
very bad???? Despite all this research and memory digging, I was not
very interested in talking about my childhood, as the bad stuff is
very much to the fore of my mind at the moment. I felt so very sorry
for our wonderful facilitator who worked very, very hard to keep us
upbeat and connected, but with me it was a lost cause this time.
Better luck next week. Last week’s huggy facilitator came in to check
on us and gave me yet another free hug. No surprise that I like this
COGS club so much; I may just have to cancel the walks and come to
Cogs everyday.

I
am not sure whether it is the weather, dementia, my tiredness,
fatigue or just me being me, but so many posts on TP wind me up at
the moment. So I have to be ultra careful about what I write, how I
write, who I write to or even if I should write. I know only too well
that at times, due to the vascular dementia, my social filtering goes
out the window and I tend to say what is on my mind without any
thinking or filtering. By the time you see a disturbed – horrified
look come across someone’s face, it is already too late. At least
with posts, PM’s, blogs etc, I can read, re-read, delete, cancel,
edit, change, show Dave etc, before I cause offence ( well too much
offence anyway). When this happens I tend to stop posting, as it is
better to say nothing than to say it how it is. Many people do not
actually want to hear any home truths so………….. with that in
mind, I will shut up now and go.


Wayne
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