Things
that go bump in the day 50

Back
to normal???? Life (10/09 – 18/09)

To
try and feel my way back into normal life, ha ha, after three days
languishing in hospital, I took on a Saturday short walk, then a long
sit drinking coffee at Dobbies. Still trying to be good and
sensible??? The walk on Sunday, rather than a day of rest, was around
lovely Capstone Park, guest of Bob’s church group walkers. Lorraine
also joined us as it was Capstone, and a beautiful day. Wonderful
sunshine, which I was so glad to be feeling again, yet the others
from the church chose to hide in the shade, then marched off ahead of
us into the distance. As I needed to be careful in the heat, and on
hills, we were soon far behind, just the three of us; Lorraine, Bob
and myself, but had a wonderful stroll and enjoyed the scenery.

On
Monday, as guest of our local MP (probably for PR purposes as we all
have dementia, but maybe I am being a little harsh), my elite peer
group went on a guided tour of Parliament, and afterwards into
Chambers to chat with our host. The day was a good one but
surprisingly, or maybe not, the place has to be, outside of
hospitals, one of the most dementia unaware places I have been.
Enjoyed a manic bus trip;the great company of my special nutters
(Harry, Harry, no I do not stutter, Lorraine & Pete); some great
sites and scenery; time with, and a chance to talk directly to our
MP; a fabulous picnic; lots of pics; and a long ride on a bus, that
almost conked out due to overheating. But that just added to the
adventure. All part of a fabulous day. But as this blog is about
dementia, and the down sides of the day were due to dementia, I feel
compelled to do a Guy Fawkes job on Parliament.

Problems
began on the way in. Despite the fact that we were there as a group
of PWD, which was pointed out to the security team, it all went
wrong. Not catastrophically so, but could have been.
Their idea of
being dementia friendly is to split people up from those they are
comfortable with, and walking with; expect you to dump all your
property; half undress by removing anything with metallic parts;
then, rather than letting us help each other get sorted again, make
everyone, singularly, go out of the building and out of sight of
those still struggling with the system and their clothes. Even those
from the Alzheimer’s Society, trying to explain the situation, were
told to move on out of the way. Because we all have slightly
different problems with our dementia, it was interesting to see and
hear how different people had such different perceptions of the
various aspects of the tour. Apart from making a general comment here
about photos, the rest of the comments are from my point of view,
although I did hear many things said during and after the event.
Photos are not allowed. OK, but some with dementia will not remember
today by tomorrow morning, and some need pictures over time to give
them back a sense of memories. Not being able to take pictures means
that, for some people, the day will only exist for that one moment;
pointless.

For
me, having visual and hearing difficulties and not being too great
with crowds (yep, was stupid to go!), the whole thing was extremely
noisy. With sometimes five tours coming together in the same room, I
couldn’t work out the words being said. It was very busy, with lots
of multidirectional movements going on all around me and, therefore,
I was unable to focus on anything except staying safe in the bustle.
If I had not been held on to, most of the time (necessary but very
enjoyable), I would have got lost within one of the other tours
rushing around us. I suppose, as should be expected at any London
tourist attraction, there were very long queues for anything and
everything. Whilst on the guided tour we found little or no seating.
But then no time is given to rest anyway, which solves a problem by
causing another? From my position, I could not quite see the point of
our lovely tour guide telling us over and over and over (yes we have
dementia so maybe he was worried we would forget) that he is a
cockney. Great, well done that man! But as four of our group were
also real cockneys, and sound more cockney than he did, plus several
of the rest of us are Londoners anyway, it seemed a ridiculous thing
to be going on about; but that’s just me. The first half of the tour,
whilst I was still trying desperately (and failing) to hear and
follow proceedings, he told us all about the monarchs; the succession
of rulers. All rather boring ruler history, which should be done at
Buckingham Palace where it belongs. Parliament is not about Kings and
Queens. But, despite all of that, once I had given up looking and
listening it was great, but would be even better with an audio-guide
you can plug into and remove all the background fuss and sound.

When
we got back to HQ in Gillingham, Lorraine and I were asked to do a
quick video quote for Young Dementia UK about the benefits of a
network of people with young onset dementia. The video was done, on a
phone, in sunshine at 3.30 in the afternoon. The result looked good
but……….! The people sorting the network decided the video was
not of good enough quality, so did not use it. Instead they took bits
where we were talking and used that as a voice-over. The Lorraine bit
had an old picture of her that they had at hand, and for me they used
what I can only describe as some random hands, some older bloke
wandering off with a woman I do not know. Why they could not have
used the video, or even used the picture of me already on their
website (my blog is linked on their site), I have no idea. Must be
because I look far too young and healthy to have dementia lol!!!!!

This
is the video anyway.

Tuesday,
and we are continuing the hospital adventures with a quick trip to
the GP. Then a not so quick trip to Maidstone hospital eye clinic
following ‘their’ request for me to attend this afternoon. Luckily,
Lorraine had accompanied me as my ‘Living Well with Dementia’
mentor, which was quite beneficial really. Went to eye clinic
reception where waiting time is notified as being 45 minutes. They
have no appointment for me, so we are told to be at the ‘rapid
(remember that word, ‘rapid’) access point’. We take about ten
steps sideways and are in front of the rapid access point. I book in
and we are asked to take a seat, so we do. Sit and wait and wait and
sit, and sit some more. Then just for a change, more wait.,Good job
it is the ‘rapid’ access appointment. After 1 hour 40 minutes of the
45 minute wait-time, and after all thirty of the people in the ‘non’
rapid queue have all been seen, we are called! As per usual, Wayne is
not a happy chappy. Then, to add insult to injury, I am asked to
answer those same old questions about medical history, medications,
dosages, again!!!! I explode, swearing, and asking why that
information is not on the computer, or at least available to read on
the many, many reams of paper that have been created about me in the
last week. Physically, and thankfully, my mentor stops me from
leaving. After going through it all again, and then having a few eye
tests on the standard eye chart, we get an apology for the wait as we
should have been first. There is an assurance that we will be next to
see the specialist. Two more people go in before us???? Again I want
to leave. This is just ridiculous, but my dementia Mentor/Rottweiler,
goes and gets it sorted. Tests finally done, by who I thought was the
specialist, but then the results are taken to the specialist who
finally comes to see me. Am I supposed to be impressed? Nope!
Apparently the results are almost clear, except for damage to some
jelly stuff at the back of my left eye, so we need more tests and
another visit to GP next week. Excellent! What a waste of a day!

After
the Wigmore walk on Thursday I am off for blood tests, which result
in yet another summons to the GP when they phone me Friday to extend
next week’s appointment into a triple????. I might get charged rent
there soon. The doctor wishes to discuss UTI’s and anaemia. Gosh, he
is in a bad way, poor man! No idea when that might have been or what
about, will find more on Tuesday.

Saturday,
Lorraine and I were due to be going with some of the walkers on
another away day trip, this time to Canterbury and the surrounding
areas. However, there was a very big and real threat of rain, quite
heavy. And as Lorraine was far from keen on the idea of unnecessary
walking in the rain, we contacted the others and opted out this time.
So, with no Canterbury we went for very similar walking exercise and
shopping. I cannot complain, as it was trousers and jacket for me. We
found a lovely set, but they only had slim-fit in this material and
design. With all the walking I do my legs will not fit in ‘slim’ fit.
I have calves, not pipe cleaners, to fit into them. The shop
suggested trying another branch so,

as
an adventure, it was off to Gravesend.

Great
result on the smart-wear, and was really happy with the clothes and
the price, so got a shirt as well. Boy, do I look good in this stuff!
Had I Known we were shopping, not walking, I could have worn shoes,
which would have completed the rather snappy look. Wrong coloured
trainers were not quite right! After leaving the shop hurriedly, as I
was sure they must have made a pricing error, we headed towards the
ferry pier where I had spotted the LV21 moored up. This boat was
where, a few months back, I had spent a wonderful, laughter-filled
evening at a one-man comedy show, which I unfortunately remembered
nothing about???? Anyway, my local council had wanted to charge them,
excessively, to stay at Gillingham pier. But Gravesend council, being
more arts inspired, paid to have the boat moved and moored here. I
was able to show, and tell, Lorraine all about it and then, totally
on the spur of the moment, we jumped on the ferry over the Thames to
Tilbury. I had never done this ferry thing before and have never been
to Tilbury, nor had any idea what we would encounter, once there. It
was adventure time, right up my street. The ferry ride was breezy but
magic. Once at Tilbury we found that they were staging an exhibition,
right there at the port, now. How about that for lucky timing! We
just wandered around enjoying the wonderful sights and sounds; had a
coffee; viewed the exhibition stuff; took selfies (new to me!), and
then ended up in a disused warehouse where a giant theatre screen was
showing a film from the 70s. We sat on the floor to watch the film,
as there was no seating anywhere in there, and Lorraine sat on my
lap. It was absolute magic, and even if it lasted forever it would
have ended far too soon for me. Even the trip back was quite special,
when a fire tugboat went past as our ferry crossed, with its water
jets firing as a test. The light shining through the jets created
beautiful rainbow effects and we got slightly dampened, but not our
spirits.

Now
I am not quite sure how, or even if, I should put this across. And
maybe I am being rather stupidly romantic and using up just a tad too
much poetic licence. But I feel the day didn’t just overcome any
issues I have due to dementia; crowds; noise; manic activity;
unplanned events; illogical shops etc. But dementia did not even
exist that day, in any way, in any form, or at any time. Love killed
dementia!!!

Now
how do we put that in a bottle and distribute it to the masses?

I
do not usually go into any details in the blog about my personal side
of life, unless of course it is dementia related, as that is the
purpose of this blog. Saying that, the last bit, this time, has
obviously been very much to do with my personal life, but I hope you
will forgive me this once. It seemed to me that the day at Gravesend
and Tilbury was so different; special, and completely free of any
dementia related stuff, that it did warrant entry for that very
reason.

catch
ya soon

Wayne