things
that go bump in the day 36

A
new COGS club and a long weekend.

What
a great and fun start to the new Age UK cogs (cognitive stimulation)
club. The brilliant facilitator has already been reading the blog and
loves it???? She is brilliant because she really seems to enjoy what
she is doing with the group, not just because she reads my blog, but
calling me ‘Wayne the Blogger’ and telling me that she was so
pleased when hearing I was joining the group, did sway my judgement,
just a little. It really was very good and I will miss not going next
week, but a rest could be in order. Shame I will not get a rest, as I
have a Memorybilia group meeting to attend. But more on that when the
time comes, if I can overcome the hurdle of it being nowhere near a
bus route. Great planning required which has not exactly been my
strong point lately? Back to Wednesday and the COGS club who, by the
way, do not know how to run a cognitive stimulation session. They let
these dementia peeps talk about stuff and don’t shut them down?
Whatever next? We still did the orientation bit at the start, but I
do not remember if one of the things was ‘where are we?’. Probably
a good job as I have no idea where the place is in relation to
anywhere else.

I
was a bit anxious Tuesday evening about the new adventure and very
anxious Wednesday morning, but all the bus connections on the journey
went well and it gave me confidence. The place is not easy to find
but I was drawn on to keep trying. Usually with something new, any
problems and I go home. So I got there despite new bus, new area, new
people, only just coming out of a 4 day dark hole and it being hard
to find. I was rather pleased with myself in the end and knew that
being here was just meant to be. Things could still change over the
weeks and months but everything felt just right in that we all seem
to be slightly bonkers, facilitators and members alike. I felt an
immediate affinity with one of the other members, but more on him
later.

Still
fighting hard to stay in touch with things and feelings today, and at
one point the volunteer facilitator was waving at me across the table
as my concentration drifted a bit. I smiled back across at him as I
rejoined the room. Lovely guy who works harder now, as a volunteer,
than he did in years of paid employment, but I guess that applies so
much to all you peeps out there who work with us as carers in
DementiaLand, working harder than ever just to keep things stable. We
all had a good and long chat about money, shopping, shopping lists
and cupboards, to which we all offered ideas on how to cope with
various situations. It brought to mind one of my escapades from
earlier this year which I related to them. I had heard a suggestion
about putting notes on cupboard doors to help you remember which
cupboard hid which items.

Seemed
good to me at the time, so I spent an afternoon putting post-it notes
on the cupboards, each with a written overview on it of that
cupboard’s type of contents. The cupboards looked a bit odd, but at
least now I would save a lot of ‘searching’ time and replace it with
just a little ‘finding’ time (now if I could get that to work with
the internet….). A couple of days later I remembered having done
the labels but they were not on the doors. Found them screwed up and
in the bin, which I knew full well I must have done. Although I do
not remember doing it, I assume that in between times I had seen
these notes on the doors, wondered who had been messing with my
cupboards, and promptly removed and destroyed them. Another
unsuccessful coping strategy bites the dust!

Another
semi-failure that came into my mind is a current one of shopping
lists. I have one magnetic wipe board on the freezer for freezer
stuff, one for kitchen cupboard stuff and one for kitchen drawer
stuff. These last two lists are pinned to the kitchen notice board. A
third central list, with all the items on, I carry around in my
pocket, because when it was on the notice board I NEVER had it with
me at the shops. This works mostly ok except I have twice washed the
trousers with the list in the pocket. Now I just need another note to
remind me about checking pockets before I wash the clothes????? One
of the others told us of her forgetting to throw away a now completed
shopping list which she then did again. Surprise, surprise when she
got home to find the cupboards already full. One more strategy for
the bin!

During
the day we also did an exercise on paper about adding up coin money.
It completely threw me to start with as I did not ‘see’ colours on
the page and could not work out 1p from 5p or 2p from 10p. Once the
colours were pointed out it was so obvious and I flew through two
sheets in a couple of minutes. After the five hours, including lunch,
had flown by we left the club and my new-found friend gave me a lift
to the local lake. Maybe he had it in mind to drown me? I was more
concerned about surviving the drive as he has dementia and still
drives, but it was really fine. We spent almost two hours sitting by
the lake chatting as he told me about his past and his family, and
discussed his now recently deceased wife. I remember the outline of
some stories but cannot remember his name??? He made the mistake of
telling me, a blogger, about one of his daughters wanting him to
voice-record his memories and she would type them into a book for
him/them. He is not keen on the idea and cannot be bothered. I
unleashed a verbal torrent on him about duty and responsibility to
his offspring, to pass these things on. Even the few stories he had
relayed to me made it clear that his children have so much to be
proud of their dad about, so he needs to capture these things before
they disappear into the bottomless pit of dementia.

Eventually
he saw reason and conceded, or maybe he just wanted me to shut up. I
will keep hounding him about it though. He then gave me a lift all
the way home. Job for life me thinks!

Having
finished the original twice weekly CST group sessions, I was finally
free to join a Thursday walk I had heard so much about from Bob. He
is rather proud of this council health walk, because with 50+ people
on it, it has become the second best attended walk each week. Having,
once again, never been to this new area, I met with Bob at a local
bus stop and he got me to the library start point where we met with
53 others, including four more walkers with various types of
dementia. Two of these I know from previous non-walking events. Also,
a facilitator from the original Tuesday group who will be running my
‘living well with dementia’ sessions when they start, is one of the
walkers in this pack. She accompanies one of the other PWD and is
also thinking of training to be a walk leader. I sort of fancy the
idea of being a walk leader and have been asked by the council
co-ordinator, but I can hardly look after myself at times never mind
being responsible for over 50 other people. It would be like trying
to herd cats!!!

It
was a very good and enjoyable walk where I pounced upon at least four
new sets of ears, all attached to nice people, and had them laughing.
By the way it was the people, not the ears, that were laughing. At
one point I heard others talking about this walk having difficult
hills but, compared with the walks I am used to, I saw no hills. By
the time we got back to the library I was mentally tired, and seeing
rows of chairs laid out waiting for our return made me anxious about
the number of people. When we are walking we are rather spread out
and you do not notice how many are there. I got my coffee and almost
hid in a corner.

Before
Bob and I left the library, our Kent ‘living with dementia’
champion caught my attention and asked if she could have a word. I
was well chuffed to get the chance for a few valuable seconds with
her, and not having to fight with all and sundry for those seconds.
She had called me over to confirmed that she will be mentoring me in
the very near future, but neither of us are quite sure what that will
involve. I queried where the time would come from, as she has only
just finished interviews with BBC radio and is about to hit London
and Parliament. She assured me that time with me is more important!
Now that is really ego tripping! It was a bit tongue in cheek I
think? During our 30 minute talk it became apparent that we have much
in common, especially with our attitudes to dementia; fighting it,
not having time for rest nor wanting to find time for rest, and our
very similar views on attitude re-adjustment of others LOL!

I
also used this opportunity to query her as to where and what time the
next MEMORYBILIA group meeting, that I have been asked to join, is
taking place. I had done an email to one of the organisers saying I
know it is next Wednesday, but do not know where or what time. She
replied confirming it is on June 1st
but
gave me no further information? Great, the only bit I did know was
that it is Wednesday 1st, it’s the other bit I need! Anyway, job now
done.

A
very busy Friday started a very busy, long Bank Holiday weekend. My
usual Friday morning walk around the non-stop hills and street of
Rochester with the wonderful members of the walking group was, as
usual, very well monitored and checked on as we went. On the way back
towards the library, we were stopped as a group and told that those
going off for the coffee morning visit, that we had been invited on
last week, were splitting off at that point. This threw me. The
arrangement had been that we would go to a certain lady’s house AFTER
the walk and go there from the library. I do not do last minute plan
changes so decided to miss the home visit and return to the library,
because that is what we were supposed to do. I am very very
inflexible at times which I do not really understand, but which I
have to accept is now part of my make-up. After 30 minutes or so
chatting and coffee at the library, the rather kind walk leader
offered to show myself, Bob and the lady whose house I was at Tuesday
(Mrs Yorkie Cat), the way to the house, even though he had not
planned on going. Good job he can be flexible. We went, and despite
the drizzly weather had a nice time inside, not in the garden as had
been planned, but I allowed that one. Only about eight of the 35
walkers turned up today, but that was plenty enough for indoors.
Whilst there, the lady spoke about her 83 year old mother-in- law who
has early onset Alzheimer’s. I did not jump on it but did think it
just highlights another example of poor understanding or
misinformation as it is now young onset and at 83 I think she is a
little past the young onset range. I spotted a BBQ unit in the
garden, and when she suggested inviting the group back another time
in better weather, I could not stop myself from saying ‘oh! that will
be great, I did notice you have a BBQ’. Subtle hint don’t you think?

It
was a really nice afternoon at the dementia cafe, lifted even more
when the couple I previously mentioned from the CST Tuesday/Thursday
group turned up. I overheard them explaining to the organiser where
they had heard about the cafe and they told him that they know Wayne.
John then said ‘Oh yes!, everybody knows Wayne’. Not quite sure what
to make of that, but I believe it is good as he keeps making sure I
get invites to various events. So either he likes me, or sends me to
all these things to get revenge on those there????

A
couple of miles more walking was then involved, as I made my way from
the church hall to the evening venue for the Spanish holiday video.
It was a good job that it did take me some time to get there, as the
start time had changed. My original understanding was that the
evening was to begin around 5, so all my plans were set around that
time, including getting the bus connection from that area at 9.30. I
had planned on getting there for 4.30, giving time to help set up and
check that the camcorder was still working with the TV. It was about
4.50 when I got there, and just gone 5 by the time I finally got
inside. The bell remote was not working again so the lady had not
heard me at the door. Weird thing is, that during the evening whilst
I was there, every time someone arrived and rang the bell, it
sounded??? I apologised for being late and said I hoped we would
still get everything done. She said about there being loads of time
as others were not coming until 7 or 7.30. Even I can make mistakes
(it has been known on the very odd, and I mean very odd, occasion)
but to get 5 mixed up with 7.30 seems to me like it must have been
changed after I had written my notes for the diary. My suspicion is
that seeing as this group also see each other on a Tuesday walk, it
was revised then and someone, whose house I went to Tuesday
afternoon, had forgotten to tell me!

With
the evening now starting later and me really looking forward to a fun
filled riotous evening, I needed to use her PC on the internet to
sort out later bus times, if they still run that late from there????
(take me back to South London where the world does not close for the
night at 10) After fighting with the PC for twenty minutes as it
slowly cranked up and steamed, I gave up and promised to come back
another time soon and ‘fix’ it!

A
glass of water poured through the vents in the back should do the
trick! She insisted that rather than have me leave early, she would
give me a lift home. Sorted!

Great
food, lots of it, and great company with plenty of people to try and
get to know better but, as is so often the case when you have built
the expectation of something up too high, the reality of the riotous
evening was not riotous. It was

fun
but, because by then I was feeling pretty tired, it was a battle to
stay focussed. Everyone was really nice and, as always, very kind,
attentive and considerate towards me, but they were not to any degree
the gushing, exuberant folks I had expected or heard about. Even the
video that showed them away in Spain, although showing that on the
whole they had a lovely time, did not come across as the action
packed mayhem I had thought was coming. I am still very lucky and
appreciate being able to call all these people my friends, and they
certainly have more life in them than most I come across here in
Kent, but the way of life here is just 50 mph slower than I grew up
with.

It
is taking me time to find my brake pedal and Dave keeps telling me I
need to slow down and rest. But I do not have the time for that and,
to me, I am now only cruising compared to past lives. But it did,
ultimately, lead to a heart attack, which could have been the start
or at least worsening of the vascular dementia. The Alzheimer’s just
came along uninvited and made itself at home in my head, so lifestyle
had no say in that one.

Saturday’s
walk was another 3 hrs and mostly on roads, but as the walk is led by
Bob we still managed to find some muddy patches. It is believed that
he could find mud to walk through in the Sahara and at the Poles. I
desperately want and need some country walks. Here I am in Kent,
called the garden of England, and I seem to be spending an awful lot
of time walking around the patio rather than the garden?

To
make up for it, Dave, Gill and I went for a leisurely stroll in
countryside on Sunday and did over 6 hours, covering nearly 19km of
fields, woods, hills, more hills and great scenery. Almost
immediately one of the quirks with my dementia kicked in as in my
mind we were scheduled for a walk in the country and I got upset and
kept on and on about there being other people walking ahead of us.
Dave and Gill gave in and we changed direction and headed away from
the path we were on. This was ok but only for minutes until I
realised we were heading for a village church and again kept moaning.
We got past this ok but once again the negatives crept in as I kept
on about walking on tracks which to me were like roads and I wanted
deserted paths. This constant negativity is, thankfully, not really
me and did finally leave us alone, as did other people. Happy,
selfish Wayne again.

Not
sure if this will work, but here is a short video clip I took which
shows how lovely this part of the country can be, and also some
pictures just in case the video does not work.

https://youtu.be/GRIT5SEMmYg

You
can see how we were mostly very far from people and places with just
beautiful land to wander across and great hill to climb so ‘shut up
Wayne!’

[trosley
pics]

As
is shown in one picture, Dave and I also went down into a crypt under
the mausoleum. Some would say that I should have stayed there!!!!
Another is Wayne, as usual, preaching at anyone who will listen. We
also have Dave & Wayne sunbathing on some ancient burial stones.

Bank
holiday Monday was Wayne holiday Monday as well, and the time was
spent catching up on writing, typing, web design and sleeping but
…… no walking!!!!!

I’m
finally getting closer to my deadline now, as I am only a couple of
days adrift

See
you again soon

Wayne