Things that go bump in the day 48

now that’s what you call a downer!! (04/09 – 07/09)

[this is a big, long story peeps so be ready for a bumpy ride]

On 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 memory.

It 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……!

During 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.

Both 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.

I awoke to an awareness of having had a very, very restless night and utter confusion now.

I 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 45 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!

Still 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?

I 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 stumble.

I 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!

We 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.

(from 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).

We 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 (whatever 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!!!

By 6.05pm we had managed to find MEDOCC reception.

Some 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) We 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?

7.25pm 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).

8.30pm we report back to MEDOCC reception and are asked to take a seat, ready for our 8:30 appointment.

9.50pm 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.

The 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.

10.05pm 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.

10.10pm, 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.

As 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.

So 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 readings.

The 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 told nothing!

After a wait (short? long?) we are marched around a few corridors,

again no explanation, on into another section with MAJOR over the entrance containing yet another waiting room. (nothing to worry about there then, just the MAJOR’S department itself!!!!) Being moved to the Major unit did little to appease the nerves and still no information is coming my way.

It seems that everyone on this waiting list, gets the blood pressure treatment from the nurse in attendance.

Eventually, 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 to 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.

Not 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!!!

By 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!

She 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 to take 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.

(do 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 bright here!

My 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?

Well 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).

The 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).

No reaction to right side, arm, leg or sole of foot. (my whole right side had probably gone home by then!)

At 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?

I will need to fetch Wayne’s medication from home so that the hospital know the types and dosages, and return when I can later.

More 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, BP, temperature and questions are done after the explanation of dementia. I 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?

A 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!

NB. 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 ………..

good hunting!

Thanks folks, luv ya.

catch ya soon