things
that go bump in the day 33

May
2016 Week 3 (part 1) and an ‘interesting’ trip to hospital?

After
a rather lovely weekend doing not much except being productive on the
website (was like being back in my past and doing web design at the
weekend), I was ready for a Monday morning stroll. Unfortunately my
body had alternative plans and flatly refused to get out of bed at
the required time. We compromised – I didn’t go on the walk and my
body didn’t get up! So after yet more rest it was time to drag Dave
off to the hospital for my ear-specialist appointment. I must digress
at this point and relay the frustrating adventures already had, in
regard to this appointment, so that you will be able to fully
appreciate my reaction to the outcome of the trip.

It
all started way back in October last year when there was a very
noticeable change in my hearing. Whenever I start to get
anxious (often) I put my earphones in and remove myself from whatever
situation. Well, on this particular occasion I thought the phones
were malfunctioning, as the sound level in my right ear was far too
low. So I pulled them out and changed ears (had enough of my ears so
tried a new set; even worse). After the change of position it was
still the right that was quieter. Not thinking in a straight line, I
went and replaced the earphones with a new set which, unsurprisingly,
didn’t solve the problem. Now my balance was out as well because my
left pocket was light by £9.99, proving that ears do affect balance.
After suffering this imbalance for too long, I went to the GP about
it and he found that my right ear was severely blocked and the left
one had an infection. 6 weeks later, and another GP appointment
revealed that the left ear infection had gone. So a ‘mining
operation’ was begun to clear the right ear. Another 3 weeks, and the
next appointment revealed that my original problem was still there
but at least it was now ‘clearly’ there, ie. the right ear is worse
than the left. All I really wanted to know now was if this shift in
balance was due to the vascular dementia. My GP suggested a hearing
test and, after a quick talk, we decided that a trip to Specsavers
was going to be the fastest way to find out. Another 4 weeks or so
went by and finally the test was done, results produced and explained
to me. Yes, both ears are degrading faster than expected but the
right is more pronounced. I waited for the next GP appointment to let
him see these pretty graphs and discuss the situation. He finally
referred me to a specialist at the ‘local’ hospital. Now the fun
could properly begin.

I
waited and waited and waited, then just for a change, waited some
more. During this time my hearing balance shifted twice more, left to
right then back to left again. This convinced me that it is down to
vascular bombs going off at random times. After 3 months waiting for
a simple letter to say date, time and location of the EN&T
specialist appointment, a 4 page letter turns up. It has choices of
hospital, none of which I know and all out of my healthcare area???
It has various codes and numbers which it tells me I need AND a box
printed on it beside the word ‘password’, with the words ‘author
paste’ printed in it. My simple dementia-riddled logic tells me that
the ‘author’ of the letter has forgotten to ‘paste’ the password in
the box, which soon became a problem.

I
tried, on a ‘good’ day, to make the required telephone call to book
the appointment, but failed miserably due to not making it past the
computerised sentry which wanted the password I didn’t have.
Thankfully, at the end of that week, I nabbed someone else’s carer
while at a dementia cafe and she made the call for me. It was still a
battle, but she got through to a person in the end and explained
about the missing password. As it turned out the author had not
forgotten to paste; ‘author paste’ was the password!!! Bloody obvious
really if you live on planet zog in cloud cuckoo land?

Despite
the letter hinting that we should choose the hospital and appointment
etc., we were actually told where and when it was to be. So why they
could not have just put that in the original letter, only the NHS and
poor depleted Amazon rainforest know. The time was set for 14.30 at
Maidstone Hospital. Good job I don’t have any cognitive issues or
this appointment system might just be a problem AAAAAGGGHH!

About
a week before the appointment a computerised telephone system wanted
me to confirm my 14.00 appointment???? Just as it had done to me, I
ignored it! The day before the appointment a text message turned up
to confirm my 14.30 appointment. Ain’t life grand! Also on the day
before, Dave used the Wickedly Wonderful Web to sort out our journey
to Maidstone Hospital. ‘Simples’, except the bus company do not
acknowledge that there is a Maidstone Hospital????? If you type
Maidstone into the search box on the journey planner, you get about
50 options of where to go but none of them are the hospital. We
finally discover that Maidstone Hospital is located at Barming Heath,
which is shown as one of the stops on the journey planner. It’s
enough to drive you ‘barmy’. The hospital, it turns out, is located
near the site of what was, but is no longer there, an asylum called
Oakwood Hospital which by now I was feeling was just the place I
needed to be taking refuge in. Incidentally, the word ‘barmy’ is
thought to have been coined in the early days in connection with the
asylum at Barming Heath. (there you go, a blog where you can actually
learn something as well!).

The
journey there was mostly ok; just hot. And although I should not moan
about having nice weather, I am English and therefore it is a rule
that I have to moan if it is too hot, too dry, too wet, too cold etc.
etc. and, if it actually stops raining for more than 2 days on the
trot, start to worry about water shortages and hosepipe bans. So the
main ride from our town all the way to Maidstone was fine on a double
decker superbus, onboard WiFi etc. and only about 15 passengers. Then
we got on a very crowded, single decker bus, to roam the ever
shrinking lanes heading out of town. Suddenly we halted and remained
halted just before a left hand corner. I couldn’t see around the
corner and so had no idea why. Eventually the bus edged forward about
5 yards and the driver announced that a delivery lorry was parked in
the middle of the road, with parked cars either side, so it was
totally blocked! After a few minutes a horn blasted out behind us and
a rather impatient white-van man flew past us then tried to pull
around the corner. He came to a very abrupt stop and sat there hot,
bothered and maybe even a little embarrassed. After some 10 minutes,
Dave had had enough and wanted to get off and walk in the much cooler
air outside. Now, although I love walking I had no clue as to how far
we still had to go, so sat tight and we ‘discussed’ it. Within
another 2 minutes we were underway and continued on for at least
another 15 minutes on the bus. Glad we did not walk! About half way
further on the bus had to wait again while a lorry sat parked in the
middle of the road. Different way of life around here and I doubt if
I will live long enough to adapt to it fully. In South London, my
home for 55 years, these occurrences would have created world war 3.

Not
being absolutely confident regarding the appointment time given, we
got there by 14.00 hrs and checked in. The receptionist confirmed the
14.30 appointment so we went to find a cuppa, but was advised by the
receptionist to be back in plenty of time; which we were. We then sat
waiting. I was getting more and more anxious and stressed for over an
hour!!!! I was there for my ears but, by the time we were called, my
eyesight had degenerated very badly and I had all kinds of black
shapes swimming around in my vision; a usual reaction when I get
highly stressed and cannot get away. This first call was not for the
specialist but to do a repeat of the Specsavers test from 3 months
previously. I was put into a chair right beside the girl doing the
testing and the ineffectual headphones did nothing to block out the
sound of her hammering on the computer keyboard whilst running the
test, which involved me pressing a button when I heard a sudden tone.
Now, because I could hear her operating the computer keyboard, I
quickly learnt that the tone only sounded each time, after she’d
stopped typing. Very soon, I found that my shaking thumb was pressing
the button in anticipation when the typing stopped, even if I did not
hear the tone????

I
explained this to the specialist when we finally got to see her, but
to no avail. All she was interested in was that my hearing was almost
normal for my age, so no hearing aid. Great, I don’t want one anyway.
I asked if the hearing problem was, therefore, connected to the
vascular dementia or the Alzheimer’s, to which I got the verbal
equivalent of a shrug and was given a yellow form to take away. No
instructions were given about the yellow form, but after crushing the
impulse to ‘get out of there’, I studied the form and found that I
was supposed to give it to the receptionist so that a follow-up could
be booked for 6 month’s time. Nice to have such clear instructions,
and really good to know that the hospital systems take your mental
state and ability to comprehend into account, NOT!
We
escaped quickly; I was frustrated and annoyed. We then decided a walk
back into the main town was in order rather than another hot bus
journey. We marched back down the side of the valley heading for the
river towpath to unwind and cool off, and to allow my eye sight to
reset, which it slowly did over the next few hours. I tried to
describe it to Dave, and the best I could do was to say it is like
having a hazy black Polo mint on my eyeball. I can see through the
middle and around the edge but not through the circular bit.
Frustrating and tiring but not a big deal if I’m not having to read
at the time.

As
we got further from the main roads and hopefully closer to the river,
the pretty lane we were walking along got narrower and narrower until
eventually the pavement was removed and we walked in the road. Dave
did the right thing and made us walk on the side towards oncoming
traffic, which for a little lane was quite heavy. This soon became a
bit scary as the foliage at the side of us got taller, meaning the
traffic could not see us until the last moment. A few close shaves
and we were safely on the river towpath with only the prospect of
falling in to worry about now. It was hot and sunny but peaceful
along the riverside. The path meandered up and down, and in and out
of the treeline. On our side of the river you could have been a
million miles from town. The other side was lined with huge houses
with immense gardens, more like smallholdings. A couple of people
could be seen out for a ride on their lawn (field) mowers, while
others were lounging on garden furniture enjoying a cool glass of
wine or a beer. Some of the properties had their own private mooring
with a boat tied up. How the other half lives, eh? I can hardly moan
or be jealous about it as I also enjoy so much freedom. Here I was,
swanning around beside the river in glorious sunshine, not a care in
the world, while most people are slaving away trying to earn a
living.

Our
slow enjoyable wandering along the river, taking in the trees, the
flowers, the sights, the sounds or lack of, was interrupted after a
fairly long amble when we came across a woman ‘gardening’ on the
towpath. Actually digging and planting right there on the towpath
(quick, take me back to South London, please!!!). We had a chat with
her, as you would, and found out that the local council is selling
plots along the river, still with the public right of way path going
through them. There are no houses to be seen near this area, just
wasteland and towpath; so a bit odd but hey, whatever. As we started
to walk on, she explained that council workers (??????) were
operating further along and that, consequently, the path was blocked
on the way to town. She said we would have to go through the tunnel
under the railway track, which runs parallel with the towpath, up the
hill a bit, through a rusty old gate, across the nature reserve then
back to the river. OK, off we go then. The first few bits of the
detour were ok, but despite being able to see the river we couldn’t
find a way back down to it. The rest of the walk into town was
through a large, old council estate (very far removed from the
riverside homes) and we were being pushed further and further uphill,
away from the river. In this heat it was rather disheartening as we
knew that, because the bus station was across the river, it meant
going all the way back down the hill again at some point. By now it
was just gone 5 o’clock, which was an ideal time for a full English
breakfast that we had developed a healthy hunger for. An hour of
waltzing around Maidstone which, although it was busy with people,
seemed almost closed for the day (I had to check with Dave that it
was not Sunday today) presented very little in the way of sensible
eateries; Mc D, Burglar king, Kentucky Fried Fingers, Grubway etc.
But we wanted something healthy, a nice fry-up! We went past a sign
telling us where to find ‘the best cafe’, which had closed at 4
o’clock??? A sensible time to shut an eating place, just before
everyone comes out to eat? (take me back to South London please!).
Finally, we found our English breakfast in a Greek restaurant.
Obvious really!

Finally
content, we drifted to the bus stop to head for home. It was here
that we got to witness one last event for the day. A bus, not ours,
turned up and a young lass, her male mate and a female friend got on.
She purchased a ticket and immediately gave the ticket to her female
friend who then got off the bus and wandered off along the road? The
driver saw this and told her she must get the ticket back. She argued
for a moment then chased her friend, shouting for the ticket. She
returned without it and explained to the driver that her mate would
not give it back. By now said friend had crossed the road and was
disappearing. The driver refused to move the bus and told her that
she must retrieve the ticket. Others on the bus were getting a bit
rattled by now. It’s 6 o’clock and they want to get home from
work. She gets off and chases her friend down, finally returns with
the ticket, disdainfully waves it at the driver and off they all go?
All of this because the bus company have a deal with McDonald’s and
you get a voucher printed on the back of the ticket worth about 50p.
Deep joy!!

To
finally end this story (if by now you even still care) a one-page
letter turned up 4 days later with the next appointment details for
MARCH 2017. I’ll either have forgotten I have a problem by then or
will have gone deaf!!

Tuesday,
and a return to the CST group. Having thought about it lots, and had
a 15 minute telephone call from the good Thursday facilitator, I
relented, did the right thing and attended the Tuesday session. It
gave me the chance to confirm with the others that they were, after
all my hard work to sort it, going to attend the dementia fair on
Thursday. All set, and I enjoyed the stimulation session as well. I
asked if the facilitator would make a call for me regarding the PIP
refusal, but this just created another refusal as she thought someone
else would be better placed to do it. She also thinks that I cope too
well with my condition to qualify anyway. I suppose this is my
punishment for fighting so hard to maintain independence, doing
computerised brain training exercises every day, attending 2 CST
sessions a week plus 2 dementia cafes, eating healthily and
exercising with up to 6 health walks per week and then riding my bike
when I can. God may well help those who help themselves but the DWP
certainly does not.

The
afternoon was back to the new dementia cafe, but this time I turned
up 20 minutes early to avoid the stress of entering a crowded room at
the correct time. Again, I had a good time and had a photo taken for
the Alzheimer’s website to do with ‘what would you say to dementia?’
I also asked the organiser, from the Alzheimer’s Society, if she
could make the PIP call for me, but she passed it on

to
someone there from Admiral Nurses. Having had a chat with me, the
nurse has decided to pass it on to my care co-ordinator at the mental
health unit and the Thursday CST facilitator. I’m getting dizzy, all
this passing is like watching a Barcelona football match. Still, I
have 3 more chances to resolve it this week; Wednesday go and bother
the Jobcentre about it; Thursday at the dementia fair and/or Friday
at a Dementia week memory cafe. While the lady from Admiral was
chatting with me I missed the instructions for a quiz we were having.
I shouted out an answer only to be told off (nicely) as we were
supposed to be working in table groups and writing the answers. Oops!

Really
odd, but Wednesday morning I was so focussed on getting to the
Jobcentre in the pouring, but refreshing, rain (no thoughts of public
showering this time), I completely forgot about going on the health
walk. That’s three walks missed this week already, which is slightly
worrying, but maybe the rest will help my ribs heal. The doctor had
suggested 3 weeks of resting for me to get better, and at my usual
rate of rest per day that would take about a year to achieve? My mind
had been totally hijacked by the problem of the PIP (personal
independence payment) refusal that all else had ceased to exist, even
walks. I could not get to see my usual contact at the Jobcentre, as
the floor manager intercepted me. He read the letter and, being
rather sharp (that’s how he got to be manager), told me they have
refused me????? Wow! I almost missed that. Now why was it I had gone
there then? Proving his real worth and being a master of joined up
thinking, he suggested that I phone them. I gave up and left before I
caused a flood with my tears. Despair or laughter I’m still not
sure. The strain of the week, or at least Wednesday morning, must
have caught up with me as I do not recall anything else of Wednesday.

Thus
we come to the next big adventure at Thursday morning’s dementia
fair, which turned out to be more of a seminar but, as they (whoever
they are) say, that is for another time. And it’s best I end now as
we’re already miles past the usual 10,000 character limit (good job
that no longer applies as we are now almost 18,700). I could go on,
as I have a lot more to cover in this amazing week, including Angela
Rippon ggrrrrr!!! and her show, and a stand up comedy night on
dementia (nothing to do with BBC or Angela Rip-off), so I’ll have
lots to say about that next time. Stay tuned, because the next bit
will be along within a few of days as it’s already nearly done.

Catch
ya soon folks

Wayne
x