that go bump in the day 48
that’s what you call a downer!! (04/09 – 07/09)
is a big, long story peeps so be ready for a bumpy ride]
finding that I had made some notes and then filed them in a different
place to usual on the laptop, I find that some details of Sunday are
with me but, disappointingly only because of the notes, not due to
was a really mega day Sunday; out as a couple, and with a couple that
I spend good time with on a few of my walking groups. They really are
fabulous people and tremendous friends, always pleased to see me and
always looking out for me, including this day, Sunday, the day after
the hop festival trip that they warned me not to go on. Great
protectors. They would usually be away at the weekends at their
caravan, and this weekend they really needed to visit it, but they
went Friday and returned Saturday just so that we could visit them at
home on the Sunday. Special people as I say, and I hope they will be
OK that I have included their picture with me. We went to their
house, which was lovely and has incredible views across the Medway,
then went on a great countryside, riverside and marina walk, with yet
more incredible views and really the best company I could wish for.
By late afternoon and having just had Sunday roast dinner bought for
me, I really was on such a high for all manner of reasons, but……!
the evening everything starts to tumble. My vision was suddenly
blurred, fragmented, with large black shapes like a psychiatrist’s
ink-blot patterns, floating around in my vision. I worked out it was
only in the left eye, but my mind was getting confused by this.
Apparently my left pupil was extremely dilated, while the right was
OK. Seems that the black shapes were blocking out the light and so my
eye reacted, strongly. I quickly became very tired and started to
develop a headache but closing my eyes and relaxing in the dark did
help, and I quickly slept.
memory and notes, including audio notes, are a bit sketchy now but,
so far as I can gather, I did not go on the walk Monday morning. But
I’m then unsure of Monday afternoon and evening. It is quite
possible that I just did not go out due to having vision troubles,
but I do not know. By Tuesday morning, as had happened many times in
the past, I had crashed to the bottom of the pit, or so I thought.
awoke to an awareness of having had a very, very restless night and
utter confusion now.
could not see clearly and was alarmed to find that I had no idea
where I was. As it turned out, I was safely in my bed. But my vision
was so distorted by my left eye that my mind was unable to deal with
the two conflicting visuals coming in, so it tried to shut down. By
opening and closing, covering and uncovering each eye in turn, I was
able to sort of work things out and placate my raging mind. It
quickly built coping strategies around what was going on and I
‘blindly’ stumbled ahead on into my day. Within a couple of hours all
seemed OK, except I could not really see out of the left eye. But
hey! That is not going to stop, not even slow down the intrepid
Wayne, so off I go to catch the bus for my Tuesday walk group. After
minutes of fretting over why the bus had not arrived, I gave up and
went home to rest some more. As I processed the events, it dawned on
me that I had been at a busy bus stop for all that time and did not
register one single bus, mine or others. In that time it was highly
likely that at least seven would have stopped at this bus stop. I
recall none. Oops!
a bit confused, fuzzy vision, blinding headache in my left temple and
shaky on my legs, I rather stupidly headed out early afternoon in the
direction of the afternoon Alzheimer’s Society dementia cafe, not
really thinking clearly enough about the possible consequences of my
actions. This entailed two buses to get there, so can be an issue at
any time. I almost made it….almost. The bus journey is just some
vague mess in my mind, where all I recall is feeling nauseous, not
seeing, dizzy, confused and wanting to go back home, but I did not
quite know how, so I pressed on. I got off the bus at the correct
stop and then found myself on the other side of the main road without
any recollection of how I managed it; but I had, safely. I meandered
across the wooded green towards the church hall, but soon stumbled and
knew I could not make it. I headed towards a tree that looked
friendly, and was offering support. Suddenly, from absolutely
nowhere, Lorraine was there and helping me to the hall. Once inside
she vanished again??? and I went to sit down. The next hour is again
blurred, in mind and vision lol, but involved phoning Dave and asking
him to use the tracker to find my location, then come and rescue me.
Major headaches; flashes in my eyes; extreme heat; sweating, as if
standing in a shower; cup of tea, but it seemed cold to drink; a
slice of cake that tasted of nothing. All the other people were
causing me to panic, as I could not focus on the movement correctly
and noise was deafening. All was becoming too much, my mind was
melting down and nothing seemed to make sense. I tried to act OK, but
inside was scared and feeling lonely and vulnerable. I needed to be
elsewhere, safe, away from here. Dave was taking ages to come. Get me
away! I decided to go to the gents, but went straight past and on
outside where I slowly lowered myself onto the concrete path and
rested against a metal stanchion. Within moments I’d cooled enough
body temperature-wise, and mind-wise, feeling safer away from all
that madness and people; so much so that I dozed off. I was asleep in
this position, and stayed that way, for about 45 minutes until one of
the others, who was leaving, woke me for a chat?
was in a bad way and knew things were not right. The people there had
maybe assumed I had been collected by Dave, but were not concerned
enough to check whether I was still there or not. Eventually, after
everyone had gone, and she had seen someone else off in a cab,
Lorraine helped me to the bus stop to meet Dave. I told her something
was badly wrong but I was unable to express myself very well! Dave
arrived, and Lorraine told him to get me to the hospital, not the
doctors, as he would not be likely to be able to do anything and
would just send us to the hospital anyway, but delayed. While on the
journey to the hospital, Dave noticed my speech slur for a short
time. Also, I had two major white light flashes in my eyes/head, both
of which hurt badly and caused me to black out momentarily and
believe the time was almost 5pm by the time we got to the hospital,
and we had been advised to miss A&E and go to the main reception
where we could explain that I need dementia support. Sounds great in
theory but, as per usual in this ‘Big Ol’ World’, practice is
not the same as theory. The main reception was closed, so the
dementia thing was out the window even before round one. To
compensate for this, I quickly found out that this hospital has laid
on a game to keep prospective patients entertained on arrival. I
think it is called ‘Hunt the book-in desk’. Playing is easy. You
wander around lost; try to find hidden signs giving clues as to what
you should do now; ignore the logical because that is completely
wrong, and ignore the illogical because that is also completely
wrong. The other thing you need to try and ignore, is the fact that
you are NOT well, and NEED help. And if you do actually need these
things, then fancy being stupid enough to come into a hospital? The
game must start after about 4.30pm, as admin staff depart for the
day. The first reception desk you come to, just inside the main
entrance door, is for the car parking. Obvious really! Why would the
vast majority turning up, who come by taxi, bus, shanks’s pony
etc., not want to buy a car park ticket??? Having given up on buying
a ticket for a car we did not have, we proceeded to the next
reception desk, a really large, long prominent area labelled as
reception, which was closed. No clues as to what next, so you just
look around to see what jumps out. Luckily it was another desk. This
one had a sign. Yes, a real, though small sign, stating that if this
desk is closed, which it was, use the Concierge desk. Result! We were
on the way! But the way was blocked by the Concierge desk being
closed. Yes, it is 5 pm, so why not expect the whole bloody place to
be shut up like it is midnight? Read the small sign again and, this
time, all the way to the end. Clear as day!, Well, a dark day. It
says go to the booking office if the others are unmanned. Still the
game goes on, as the booking office is not in the same department!!!!
Find the booking office in the next building through a short
corridor. Again, pretty obvious really. Why would you want to leave
the reception area for evenings in the main entrance hall during the
evening? It has been there in main reception ALL day. But people
would be bored with that, so let’s hide it next door!!!! Sure am glad
I do not have any mental issues or am feeling ill, or else this could
have been a problem. Luckily Dave, who does not have dementia, got
confused by it all very quickly. So we gave up, relied solely on
luck, and found it. So having finally completed game one, we could
concentrate on the next 12 hours. They were going to be difficult
ones compared with how easy it had been so far, ha ha!
gave up on the idea and the advice that we should find a dementia
rep, and headed for the booking office to see what the next step
might bring. I gave the young woman my name and D.O.B. which she used
to instantly bring up my full name, address and doctors information.
Not bad, the computer system works……… though this was the last
time, for a whole week and a bit, that I would encounter a health
service computer system that was worth more than scrap metal value. I
told her about me having dementia, and that it could create problems
with questions and answers. So she noted it on the system and very
carefully listened while I gave her a brief idea of why we were
there. We, Dave and I, just in case you had forgotten I had Dave with
me (he hadn’t, but was beginning to wish he wasn’t, and that would
only worsen as the night wore on), were told to take a seat and wait
for triage. Dave wandered off (must try and stop him doing that!!!)
to get something to eat and drink, and I sat, wondering why people
kept looking at me. I know that extreme handsomeness is unusual and
hard to keep your eyes off, but these are supposed to be sick people,
like me! Well, maybe not sick like me, or maybe just not even like me
at all. Dave returned, and looked just above me at a TV screen
letting us know how long things would be. It also told me that people
were looking at ‘it’, not me. Oh well I can dream lol. I managed some
of the sandwich and drink that Dave had acquired for me but, still
feeling pretty nauseous, it did take over an hour. The wait time on
the TV was predicted to be nearly two hours but, as it turned, out
the wait time was not really for the triage but for being seen by the
on-call doctors, after the triage. Getting into triage only took
about 50 minutes.
this point the notes; memories; audio prompts, are mixed and sketchy.
So the following text is from myself and Dave, with Dave’s
recollections being in BOLD type).
get called to a small adjacent medical room with two nurses in
attendance; one to take down details, all the same details already
painstakingly given at reception, the other nurse is to take blood
pressure etc. It is again emphasised that Wayne has dementia but,
despite this, Wayne is asked what current medication he is taking,
and the respective dosages. He struggles a bit but manages to name
them, along with the dosages; which isn’t bad when considering what
he’s been suffering all day. On completion of this process it is back
to the reception desk, where we are directed to book in at MEDOCC
that is supposed to mean), the other side of the main entrance. It
does not take that much finding compared to what we have already
encountered, but is not clearly signposted, just like everything
else. So far, hospital or not, this has been one of the least
dementia friendly/aware places we have ever visited, and it was all
downhill from here!!!
6.05pm we had managed to find MEDOCC reception.
preliminary questions (same
ones again; maybe the ploy is ‘practice makes perfect’),
during which time we re-emphasise that Wayne has dementia. (they
seem to keep forgetting – wish I could)
are told there will be a long wait and it would be better if we were
to return at 8.30pm. We therefore decide to take a leisurely stroll
to The Great Lines park for some fresh air and deliberation. While
we are outside enjoying the evening air, Dave gave me a couple of
tablets to take for easing the, now pounding, headache. I cannot
remember what they were (Ibuprofen),
but it caused raised eyebrows later. So, Triage rate me as bad enough
that there is a need for the on-call doctor to see me. Later I am to
get admitted as an inpatient, but for now we are allowed to wander
off, wherever! Work that one out?
finds us on the way back to the hospital. Wayne suggests we have time
for something to eat, so we decide to get some Kentucky. (Wayne has
his appetite back) (And
wants a better reason for feeling nauseous).
we report back to MEDOCC reception and are asked to take a seat,
ready for our 8:30 appointment.
and finally a doctor calls us into her room and takes Wayne’s blood
pressure. We mention, not quite for the first time, that Wayne has
dementia. She asks the same questions of Wayne that have already been
asked, i.e. symptoms; when they started;current medication; dosages
etc. The doctor then shines a light into Wayne’s left eye (the one
that has been causing him considerable problems), resulting in severe
discomfort/pain. She says she is unable to see into the eye properly
with just a torch so tries to locate some better more specialist
equipment. Once located, it does not work. So she gives up, but
suggests the possibility of a detached retina. She also says that a
referral to the medical team is required so that more extensive tests
could to be performed. Before we move on, I tell the doctor about the
tablets and ask if it is ok for Wayne to have some more Ibuprofen.
doctor thinks it is a good idea, if it is helping with the headache,
so I give him another two. On our way out, at MEDOCC reception, we
are directed back to A&E to report there.
and back at A&E reception (otherwise
called the booking office, just to keep things simple),
we are informed that Wayne would have to give a blood sample prior to
seeing the assessment team, so that everything is ready for them. We
are asked to take a seat until triage are ready, and then come back
and wait for the medical team.
Wayne is called into the same small medical room we’d attended on
arrival, but this time with two different nurses in attendance; one
to take down details (again) and the other to take blood pressure
(again), plus the requisite blood sample.
I’m standing in the doorway contributing to the preliminary
discussion (because the room is not really sizeable enough for four
people), the door is suddenly closed on me without so much as an
‘excuse me!’ Slightly taken aback, I immediately knock on the door
and explain that I have to be present, as Wayne has dementia (can you
see a pattern emerging here?) As I enter the room, the nurse seated
at the desk taking details and who, incidentally, is in possession of
Wayne’s paperwork and who also has at her disposal, that most
wonderful of inventions, the computer, asks, ” He has Dementia?”
I give a verbal affirmation and a mental sigh of despair. Inevitably
the same questions are forthcoming. I’m beginning to think we might
be stuck in some sort of nightmarish loop; the same questions, but
with different faces.
one person is firing questions, the other is buzzing around all over
the place, doing stuff. All a bit much, especially as it is my
eyesight that is a major problem. There’s an ECG reading carried
out at some time during these proceedings which, although it may be a
fairly standard procedure, could have done with being explained as to
why it was being done. I was not exactly in the best of mental places
at this time, and the worry of why the need for ECG took me back
twelve years to my heart attack, which did very little to help the BP
other nurse, try as she might, is unable to extract anything but the
merest drop of blood from Wayne; certainly not enough for test
purposes. She even tries the back of his hand (either his veins have
collapsed, or he’s just being stubborn). How
come it will not come out is a mystery, as after the shock of the ECG
it sounded as though it was fighting madly to get out! They’ll have
to try another way! A quick chat about headaches and an admonishment
for Dave because of the random, doctor approved tablets, then the
nurse gives me two paracetamol. Then it’s back to the desk, and the
waiting room, presumably for the medical team. We still are being
a wait (short? long?) we are marched around a few corridors,
no explanation, on into another section with MAJOR
the entrance containing yet another waiting room. (nothing
to worry about there then, just the MAJOR’S department itself!!!!)
moved to the Major unit did little to appease the nerves and still no
information is coming my way.
seems that everyone on this waiting list, gets the blood pressure
treatment from the nurse in attendance.
it’s time for Wayne to give up some of the ‘red stuff’, and
this particular nurse makes sure that he does. But
it is done by hauling me off into another room, leaving Dave still
sitting in the waiting area. I again (yes again) explain about the
dementia, and that Dave is my carer and needs
be here. She is very determined and insists he is not needed just for
bloods, and then starts to ask me the standard questions plus some
others about medical history. Angry and confused, I refused to say
any more as I just wanted to go home and suffer in peace. But she did
at least manage to get blood out of the stone; me. And, after a
couple of failed attempts, she manages to get a cannula in, but tapes
it up poorly.
knowing what should happen next, or how long we’ll have to wait, we
cling to the hope that this will be the last piece of the process
before we get to see the ‘A-Team’. For
our entertainment some guy was given a pillow and some blankets to
make a bed on the plastic seating, as no beds were available for him.
Lucky bugger also got a cuppa!!!
now we are into the early hours of Wednesday morning. Enter our
favourite nurse (the Blood Faerie), who says, “I’ll take you to
where you should be!”. This
was no surprise, as hours ago the reception had said we were to be in
triage waiting for the medical team, NOT Major’s!
leads us down to a ‘T-Junction’, at the end of a long corridor,
where several people are languishing on their respective trolley
beds. She instructs Wayne to lie on his earmarked trolley bed, and me
a seat. Wayne, being Wayne, and feeling a tad pissed off, does not
wish to recline and begins to pace up and down like a caged animal.
I detect the grinding of teeth?) His blood pressure has increased to
the extent that blood is leaking into the cannula, which was left in
his arm during the sample extraction. Still
we are not part of the information loop and have been moved to a ****
corridor. I am angry, extremely disturbed and agitated, and unable to
calm my mind or body, so have to pace, fists clenched. It is far too
poor eyes have been assaulted ever since we arrived, by having lasers
etc. fired into them. I am tired from an extremely long and stressful
day, now parked like an unwanted car in a corridor, under lights so
bright I have to wear my sunglasses at 3am. It is also far too busy
along here with non stop coming and going. I want to leave, not lie
down! You can all just **** off and leave me alone! There is no
privacy, as we can hear all the conversations with other patients
i.e. what is being discussed by staff about their
symptoms/treatments. So much for patient confidentiality, ha ha!
Perhaps I should write up some of the conversations, just to prove
I’m not making it up! At long last, after ‘hearing’ loads of
information about other people, we are told something. The doctor is
on a break. Lovely, well deserved I am sure! But not exactly what I
was wanting to hear at that time, whatever bloody time it was?
into the ‘wee small hours’, a doctor arrives and spends quite a
while performing extensive and thorough cognitive/co-ordination tests
on Wayne. She needs to test his reflexes, but doesn’t have the
necessary tool to hand, so she leaves to acquire it. After what seems
an age, she returns with another doctor/consultant but without the
reflex tool (Wickes must have been closed).
second doctor, registrar, proceeds to ask Wayne the same questions
the first doctor has asked and does the same tests, but not as
extensively nor for as long. His reflexes are tested with the edge of
a stethoscope chestpiece (a very versatile medical instrument).
reaction to right side, arm, leg or sole of foot.
whole right side had probably gone home by then!)
some ungodly hour, it is decided that Wayne will need to be admitted
for more tests, and all they entail. Strangely,
I am not allowed to go home. Not allowed, even, to be escorted to get
any stuff that may be needed. Very different from several hours ago,
when I was in a far worse state and was allowed to go out over the
park, and off to KFC?
will need to fetch Wayne’s medication from home so that the
hospital know the types and dosages, and return when I can later.
questions and BP, yet again, while Dave is away. And as the guy doing
this next round of tests was working, the earlier aggressive nurse
(haemogoblin lol!), went past telling him to ‘look after my man for
me’. Guess she has a soft spot somewhere then. (Incidentally, just
for the novelty of it,
temperature and questions are done after the explanation of dementia.
really do think I need a business card with all this stuff on it, or
maybe go back to my original idea of a t-shirt saying, ‘I have
dementia’) I finally relax a little as a nurse and I, with my ever
increasing stack of paperwork that no one ever looks at, make our way
upstairs to go for my expected, and much discussed, scan. But no!!!!
We enter the SURGICAL ASSESSMENT UNIT! Now they should take my BP, as
it will blow a hole in the top of the tube. Panic mode kicks in! Why
have you brought me here, I am supposed to having a scan? She checks
the paperwork and confirms that this is where I am supposed to be?
few days on this ward are about to begin. And as this episode of the
blog has already been excessively long, and pretty traumatic to
relive, I am ending it here. But the rest, much better, will follow
in a couple of days, once my heart rate subsides to under 200 LOL!
If you are interested in seeing Dave’s account of the events; text
that has not been ‘got at’ by me, he has posted his version on his
website, which can be got at here ………..
folks, luv ya.