that go bump in the day 51

time (19/09 – 02/10)

was to turn out to be a week of highs and lows, some dementia
related, others just life’s hiccups, began on the Sunday with
rather random instructions about a meeting point and ended the the
following Saturday with another rather random set of meeting point
instructions. Between these two points was a line graph that
resembled a heart beat monitor printout with ups and downs all over
the place. But let us start the journey with the Sunday afternoon
meeting point.

the incredible mental and emotional heights reached on the Saturday,
it was actually very nice to have a quiet and restful, reflective
Sunday morning, which allowed me the time to fully digest the details
of the previous day. Lots of happy memories crossed my mind,
thankfully, resulting in many smiles across my face. I hope it will
be a very long time before dementia steals these from me. I was due,
with Bob, to attend a charity garden party during the Sunday
afternoon, and had made arrangements with a female walking group
friend to be picked up and taken in her car. We wanted a lift, she
wanted to give the car a run, everyone wins. The instructions were
that she would pick us up, on a particular corner, at a precise time.
I met Bob and we went to the designated corner. Whilst on our way
there, I was on the phone making arrangements to meet someone else at
a bus stop near the house we were being driven to. All was well
(famous last words!!!). The right time came……. and went, by about
ten minutes? No sign of pick-up, or text, or call about it. Had to
make another call to the other person who was, by now, at the far end
bus stop waiting to be met. As I spoke on the phone, explaining the
situation, I wandered about a bit and happened to see, jumping up and
down at a different corner down the road, our expected driver. Bob
and I walked there and then on to the car. She had been delayed, and
rather than walking to us or driving to the correct place, had chosen
to leap up and down in the hope we would see. All went well in the
end, but good job I do not need clear, precise, stuck-to instructions
ha ha!

visit to my actual named GP came about, but the only outcome seemed
to be that I do not have, nor have I had, a UTI. Nor do I have
diabetes or anaemia. The number of options as to what may have caused
my hospital saga is shrinking fast with every test result. There was
a disturbing outcome from this visit, though. The doctor has gone
totally against what two other doctors have been on my case about,
and does NOT want me to keep reporting in every six weeks, unless I
think there is something wrong. Well, me not being the expert, I do
not see that it is my job to decide what is wrong. Best thing is
change the doctor and keep going every six weeks.

three fantastic days away with some of my friends from the Friday
walking group. Thirteen of us went away to terrorise Eastbourne, and
we did, but only after thankfully overcoming a few probs that I threw
in to start with. I needed a lift there and was only prepared to
travel with someone I knew, which is one of my dementia quirks. It is
a bit of a nightmare when it comes to cabs, as will become clear when
I discuss the next MemoryBilia meeting LOL! This was a problem,
because the only available driver, with spaces, that I knew and felt
comfortable with, lived far enough away that using the bus pass to
get there would have cut the time margin to only four minutes. Not
good when buses are involved, and a long journey with a complex
schedule needs to be met. This problem was resolved by a very good
friend, also coming to Eastbourne as a driver, who came and collected
me, collected others, then dropped us at the Eastbourne driver’s
house. All went very well. Thank you very, very much mate!

drink and eats for breakfast, then coffee at the driver’s house
before we started the journey. Stopped at a petrol station to meet up
with three other full cars, so that we could convoy. Good plan, but a
logistical nightmare on the road as we all desperately tried to
remain in convoy and not get many of the multitude of other rush hour
drivers in amongst us. Several near misses later, and less than half
the journey done, we stopped at Dunorlan Park for rest; regroup;
drinks; toilet break; leg stretch etc. This would have been great had
the car park not been so full that two of our cars could not park
and, therefore, could not carry out any of the above! The result of
this hiccup? Because not everyone benefited from the first stop, we
stopped again about twenty minutes later and re-enacted the
whole first-stop scenario but which, this time, included eats. It
took about three hours to complete the sixty-mile trip but eventually
we made it, only to find that we now had another two hours to kill as
the hotel was not ready for us to check in. Answer to this problem?
Go for a walk and find something to eat and drink, again. I went for
a sit on the beach, in glorious sunshine, and enjoyed the beautiful
sound of waves on shingle. So restful after the long journey and much
better than more tea, coffee, and food. Finally we all got to check
in, spruce up, then go out for eats and drinks, yet again. After a
great evening of entertainment at a noisy band stand, where we
enjoyed clapping; singing; foot stomping; disapproving looks from the
locals, and a fireworks display set to The 1812 Overture, I went for
the sanctuary of the hotel, and sleep, while the others went for eats
and drinks??? The three days away really were a good time. There were
great walks on the Seven Sisters, brilliant company, and the most
amazing weather anyone could ask for at this time of year. And lots
of eats and drinks thrown in for good measure. Before we started back
on the last day, we all had big breakfasts at the hotel. Then we went
for a walk and paddle, and eats at a posh tea shop that almost turned
into a chimpanzee tea party; but fun was had by all. Then we started
the drive home, again in a death-defying convoy, and they had eats on
the way. It had been magic, but I was glad to get home and rest from

only thing, for me, that put a damper on the whole adventure was to
do with petrol money. I am no longer a driver, as the dementia has
made cycling far too dangerous. So driving would be suicidal for me
and carnage for the local population, so I stopped before any trouble
could occur. This means I no longer have any idea about fuel prices,
only that my bus pass gets me everywhere for free. Although it would
have taken three hours (as it did by car anyway), I could have got
there by bus, for free! Anyway, with the journey being 60 miles each
way, in a Range Rover that has an average diesel consumption of 30
mpg, at a price of about £5 per gallon, I worked out the fuel cost
to be £20. At breakfast, on our first day there, I had heard my
driver discussing with another driver about costs, and he’d thrown
out the figure of £16. So, in my black or white dementia world, I
therefore calculated that with four of us in the vehicle, it was
either £4 each at the £16 total or £5 each at my £20 estimate. I
gave the driver £10 for two of us. He was far from happy, and made a
seemingly sarcastic remark of, ‘Oh, £10 for two of you, well thank
you so very much!’. He took the money, but it was not happily

from the exertions of traipsing up and down the hills around
Eastbourne, a rest was in order. So, I completely ignored that idea
and went for an away day walk around Faversham to celebrate Bob’s
birthday with the Saturday afternoon walking group. All was well
until we hit the start, as I discussed at the start of this blog. The
instruction, passed around via Facebook (big mistake to start with),
was that we would meet at the usual library, divide up into available
cars, drive to a pub by Faversham for a drink and then start the
actual walk. By the time we finally got to the pub for the meet and
start, several disappeared for a much needed toilet break, while I
ordered a couple of much needed coffees. Those who had entered the
pub used the toilets, and left ready to start walking with those
others who had not even come in. No stop, no drink, no coffee? I was
certain that the instruction had therefore been changed while I was
away in Eastbourne, and I begrudgingly had to join the others,
walking quite fast, over muddy rutted fields, carrying and spilling
very hot coffee. Not a happy chappy! I do not handle last minute
change very well as has been proven in the past. Slowly things
improved, including my now fractious mood. The day continued with
lots of walking; talking; scenery; drinks; strawberry stealing (let’s
call it scrumping to try and keep it OK and semi-legal!!!); a van
breakdown, as I was taking a picture (the wheel fell off!); and a
really lovely old church. So much to enjoy. But then it all went
crash again due to madness over the cream tea bill, and tip, back in
the same pub that had been the troublesome starting point. Twelve
people, each having a cream tea at £4 a time, was £48. But our
leader, that day, quite rightly decided that as it was Bob’s
birthday he should not have to pay for his. Simple solution would
have been, therefore, eleven people at £5 each would pay a total of
£55. That would cover the £48 bill and leave £7 as a good tip for
the waitress; simple. But no! It took almost twenty minutes of
debate; arguments; frustration, and many recalculations. Then,
thankfully, one person had got so fed up that she agreed to pay the
tip and we finally departed, having paid, I think (brain gave up and
melted), £4.50 per head???

bloody birthday Bob! He did not care and just went off for a beer,
sensible man.

next week went quite quickly with not much of note, so a short
breakdown would include:- attending elite peer group where, during my
update, I retold part

my hospital nightmare only to be told that someone the group knew
well had started dementia awareness at the hospital twelve years ago
(well that one had been a real big success then, not!); having my flu
jab; an extremely short, and pointless, dementia care update review
that basically said nothing has changed,

my test scores were, as always, good, fine, and therefore confusing
blood test results (still no answers then). I did not go to COGS
session as I was tired, and just knew the journey would be far
too problematic and stressful. I think I enjoyed my Thursday and
Friday morning walk groups, but do not actually recall anything about
them. And, thus, we reach Saturday again, October 1st, Leeds Castle
Alzheimer’s walk day.

want, at this point, to say a really big thank you to everyone who
did sponsor me via the web site, phone text or the form carried
around on the council health walks. Between us, we managed just under
£200, so a really big, big well done, hug and kiss from me to you
all. Bring on another challenge and see what we can do.

now just to show/explain/justify why I think that every penny was
well and truly earned, the story of that day!!!!!

what has been a lovely long, hot, dry summer, apart from odd spells
of wet, it was rather disappointing to awake and find that a day I
could do with being very dry was, in fact, very wet. As the morning
progressed a little the skies seemed to brighten at times, but that
just led me deeply into a very false sense of security believing all
would be dry as usual. Nope. Just after leaving home to start my two-
hour bus adventure to Leeds Castle, the heavens opened and I got the
first soaking of the day, on my way to the local bus stop. Good
start, soaking wet trousers and a very damp shower-proof jacket. I
know that sense would have dictated that I wear something
rainproof, but it was still like summer and the air was warm. A
rainproof jacket is heavy if I have to carry it, and the weather did
not seem all that bad. Besides, I had a change of top clothes with
me, so ha! The bus I wanted arrived a bit late. Then, to make
matters worse, the long journey was very slow. Whether, or not (ha
ha, not weather), it was due to a slow driver, or the weather
conditions, I simply don’t know. Also, the bus I was on must have
been the only one in the Sapphire fleet that did not have working
internet that day; unless that was a victim of the weather as well.
As the journey went on and on, slower and slower, more and more
delayed, I got anxious about making my connection in, by now, twenty
minutes time. If I missed that one, I would only just get to the
castle in time for the walk, not the hour beforehand for registration
etc. (remember this hour-before requirement). With no internet, and
very poor signal, even the phone went emergency only. That always
gets me. If there is no signal, how does it know to work for
emergency calls??? So I could not check up on the current state of
bus times. The rain was pouring down on the bus so heavily that it
even appeared to be leaking in through the front window; not good.

the time we got to my stop we were already too late for me to make my
connection, even if I ran all the way to the bus station. I didn’t
bother with running as I had already missed it, and would now have to
kill time for an hour until the next one. On the plus side, the long
hot bus journey had at least allowed me to dry out. I strolled
towards the bus station trying to find a cafe where I could get a
coffee and sandwich to while away some time. Failing so far, I was
close to the bus station and looking to cross the road, when along
came a bus, with my number on it!! Now I ran. Lung-busting ran! Got
to the station just before the bus closed the doors to leave, and
wheezed out to the driver about how pleased I was to see him.
Apparently the weather had also slowed the progress of this bus and,
although now very late, was the one I had targeted as the connection.
Brill! Back on track just about fifteen minutes behind time, but much
better than an hour.

journey to Leeds Castle and, at one point on the journey through the
now fine rain, I saw what I believed to be a triple rainbow. I made
several failed attempts to picture it, but foggy window, trees, high
bushes etc. all conspired to stop me getting a shot. Finally, after
what again seemed a long but scenic journey, the bus turned into the
castle grounds, and trundled on across the open grassland to a set of
car parks, where I was discharged. Open space, hundreds of cars, a
few people, one bus stop. I asked the driver to confirm that this was
the only bus stop and would be where my return journey started from.
He confirmed and left. Maybe I should have gone with him????

wandered around the first car park a bit, looking for any signs.
Event signs; information; where to go; how to get to the castle;
anything, but nothing. Wandered around the second car park. No better
luck, but at least this one had people getting out of cars. I
followed some, but they were at a loss as well, only they were trying
to find the castle, not the walk. I sort of trailed along behind
them, getting slowly wetter in the drizzle. After about thirty
minutes I turned up at the castle kiosk and asked about the walk.

it is over there but you cannot reach it from here.”

quite what I was after! The directions I got was to go all the way
back to the car parks; out along the entrance road (the one the bus
had taken); out of the main gate; up the hill, then across the
fields. Marvellous! I half walked and half jogged the two miles, or
so, hoping to still arrive in time for the one-hour deadline for
registration before the start of the walk. On the way, I passed a
coach that had parked right in front of, what appeared to be, a hand
written sign for car drivers, directing them up the hill to the event
car park. Doubt if any of them saw it without x-ray eyes! This was
the ONLY sign I saw on my travels, until the entrance to the event
car park, up the hill and along a lane. Hidden in plain sight, I
guess. Was pretty much soaked through again, by now, and the warm bus
journey seemed days ago. I was now wet on the outside, and extremely
hot and sweaty from the inside. A lovely relaxed state to be in,
ready for the walk! Still I had not quite made it, as I now had to
very carefully and slippily*navigate my way, on foot, through the
muddy car park, dodging cars that were skidding their way out. On the
way out, after the walk, I did manage to find (again not signposted)
a mud-track footpath that missed the ‘dicing-with-death’ car park,
but that was then, not now.

new word, by the way. Verb: to slip; Adjective: slippy; Adverb:

has either been expunged from the English Language, or was never a
word in the first place. Well it is now!! For my purposes, anyway).

very, to find myself fairly unscathed and still alive enough (not
sure about fit enough) to do the walk, I tried to find where I needed
to check in, albeit fifteen minutes late. As it turned out, if you
are pre-registered (everyone had to be, as there are NO registrations
done on the day) you do not need to sign in, and there was nowhere to
sign in. I could have turned up forty-five minutes later and still
been on time. Happy? No!

was said, during the pre-walk tannoy announcement, that there were
over three thousand people there and I, not being good with crowds,
kept very much to the outside edge until start time. The build-up was
fun, watching and spotting lots of people I knew, but I stayed away
as I did not want to venture into the crowd. I was also aware that I
needed to complete the walk and run back to the miles-away bus stop
and I did not want to be slowed, walking and talking with others I
knew. I could have done with a hot drink, as I was cold and wet and
slowly drying under my own ‘steam’; not very good, really. Only
one hot-drinks stand was available and it had an extremely long and
crowded queue, so I went without. As the start time came I worked my
way around the edge, and then into the front middle by the tape. We
were off and away! The course was a bit slippy (the adjective version
lol) underfoot as the wet grass did not provide much grip, but there
were many, many marshals trying to warn of hazards. I almost flew
around the course, up front with youngsters who kept me motivated,
fast and very entertained. Their dedication to this cause is
brilliant, and I truly wish, and hope, that some kind of respite to
this awful enemy will be found before any of our current youngsters
get hit by it.

minutes later I flew across the line, and took my medal. As I did so,
I had a quick chat with Katie, our local Alz.Society services
manager, then tiredly, and hurriedly, headed out for the castle car
park a couple of miles away.

despite my very best efforts, I missed the bus. Probably only just
missed it, but miss it I did. This meant ninety minutes until the
next, and last one. I was pretty exhausted; thirsty; hungry; and hot
and bothered, but feeling quite elated and pleased with myself for
doing all of this. I wandered back out of the castle grounds, again,
and found refuge in a pub, where I had a coffee; a sandwich; a
toilet break (needed badly by now); a much needed sit down; and
chatted with some other wonderful survivors of the walk. This all
happening and the pub getting extremely crowded, was making me
anxious, I left and found a bus stop, going the wrong way, but a bus
stop. I could maybe get a bus to a town and work my way from there,
rather than hanging about in the wet air, yet again. Whilst at the
bus stop, still proudly wearing my ‘Walk’ T-shirt, and now
sporting the newly gained medal around my neck, many, many cars with
departing walkers went past, probably up to a hundred cars with
T-shirt-wearing peeps in them. Many went past beeping, waving, and
giving thumbs up. Lovely, but not one stopped to offer a lift? With
no sign of a bus, and fed up being waved at, I headed back to the
castle car park bus stop to await the eventual bus, now only about
thirty minutes away. Alas, one more twist in the tail awaited me at
the stop. A Land Rover pulled up and the driver informed me that they
were closing and locking the castle grounds. I tried to explain that
my bus was due, but this made no difference. I left, and they closed
the gates. Now unsure of what next, I walked towards where the bus
must come from until I reached a junction. This was a problem. Which
way would it come? I had no choice but wait, and hope, and hail it.
All went well. The driver stopped, rather than run me down (lucky I’m
in the country rather than in town), and I explained about the castle
being closed. He was not pleased, as we got back there to find his
way blocked, But I assured him that there was, without doubt, no one
at that stop. In the dry and safety of the bus, and being the only
traveller, I finally climbed out of my very wet, but proud, T-shirt
and into my dry top. It felt lovely, but I was still chilled to the
bone. It took a full three days before I felt fully recovered, but I
was well pleased.

what a day! But a great day. And despite the ups-and-downs, or maybe
because of them all, a really enjoyable and feel good day. Again,
thank you all so much. Maybe next year the Alzheimer’s Society could
use a tiny bit of the funds to make a few crummy cardboard signs for
those NOT IN CARS, and just maybe a map of the venue and surrounding
area with points of importance marked on it. The map could be on the
event website so, presumably, would not add to costs, as those that
need the map could download and print it for themselves. Still a
great day and I am very much looking forward to next year’s
challenge. And who knows? Maybe even some others in between.

all that fun, excitement and effort, Sunday was thankfully a silent
and restful day. On into October we trundle.

my travels around the internet, I came across a marvellous quote that
to me, sums up my views on living well with dementia. It goes like
this ‘just when the caterpillar thought his world had come to the
end, he turned into a butterfly’.

that is how to view a diagnosis of dementia.

ya soon