Creme Caramel To The Rescue

Today was a good day.

No test results yet, of course. That would be too much to hope for.

For a long time now it has been my policy to sample everything they give Rosemarie - apart from the medications. When it was solid food I would check myself whether it was hot enough or cool enough or cooked properly. Were they really chicken goujons or fish? Was that Angel really Delightful? This is how I found out that some of the care workers gave her tea with sugar and couldn't understand why she didn't want to drink it. I discovered most of the meat was the consistency of leather, and some of the soups were far too spicy even for me. The orange juice had that distinctive chemical taste and she much preferred apple juice - a preference which was widely ignored.

When she was moved over to pureed food and thickened juice I continued the policy. At its best the pureed food was bland, at its worst it was cold, often with a thin crust over the top. The puddings were either some anonymous and largely tasteless 'delight' offering, or one of the fortified puddings, called Forticreme. On the whole these weren't bad, although the vanilla flavour was imperceptible and the banana flavour used that strange metallic flavouring that has become the representative of bananas although it tastes nothing like them.

The dietician replaced them with something called Nutilis Stage 3, so I tried some. It looks like a thick creamy yoghurt but it tastes like wet cardboard, followed by a strong but plainly artificial aftertaste. 

The only thickened juice I would have considered having was apple juice. The cranberry was too sharp and I have mentioned the orange juice already. Thickened water looks and tastes like wallpaper paste. Thickened tea....well that is just an abomination.

So as we have been trying to get her to eat and drink again it has become pertinent what we are expecting her to eat and drink.  The plan (among those of us not expecting her to die in the next few days) has been to get her going on thickened juice and Nutilis Stage 3 and work her back up to pureed food. The notes made by the other care workers show very little success, and record her as regularly refusing the Nutilis, or 'keeping it in her mouth'.

I was thinking about this yesterday and trying to put myself in Rosemarie's position. If I were thirsty enough I would probably drink the thickened juice, even if it were the thickened orange, assuming I could swallow anything past the lump of phlegm in the back of my throat. The pudding was another matter: I would have to be very hungry indeed to want to eat it, even though a 150g pot contains 200 calories (and I doubt she knows that).  I remember from periods of illness myself that you can get out of the habit of eating quite easily, and it occurred to me that we needed to be more creative in what we tempted her with. I remembered the SALT talking about using strong and interesting flavours.

So I thought back to what she used to like as treats and went hunting down the Dessert aisle at the supermarket. They didn't have the chocolate mousse I was looking for but they did have creme caramel and I remember her liking it years ago so I bought some. 

I actually took it to the Care Home yesterday but Rosemarie was too tired by the time I was going to give her some. I did mention it to the doctor though, who was enthusiastic about the idea. 

When I arrived today I found Rosemarie not only awake but active, looking around, making noises and smiling. She also seemed to actually be noticing the photographs of her daughter and granddaughter on the wall, and looking at them. I am not saying for certain there was recognition, but there was certainly awareness.

She also looked straight at me, which she usually doesn't do, and again there seemed to be more consciousness there. I think this is due to the end of the Clonazepam more than anything else; I am not going to delude myself and think she is going to get better, but maybe her quality of life may be improving. 

I told her I had a treat for her and got out a creme caramel. From the very first spoonful I knew we were onto  a winner. She actually said "Mmmm". She seemed to swallow each spoonful easily and quickly. And safely. I was thrilled. I left the caramel juice (too liquid for her) but I got a sense that she was still happy to eat, so I got a raspberry yoghurt from the fridge  and gave her that as well. She was also happily working her way through 200 ml of thickened apple juice I had made up.

I was leaving a minute of two between spoonfuls so in between I was talking about her granddaughter and every time I saw her looking at the pictures I told her it was a picture of her holding her granddaughter. Lots of smiles and sounds. I had to be careful not to get carried away and draw rash conclusions.

We had a break after the yoghurt and concentrated on finishing the juice, but after half an hour she still seemed alert (and she was still sitting reasonably upright) so I opened another creme caramel.

This was harder than the first one and it was fairly clear she was getting tired. She had slept very little during the day and not at all since I had arrived, and she must still be very weak. 

We made it to the end though, and I even made a fresh thickened apple juice and started feeding it to her. I had noticed that the 'food kept in her mouth' that I and others were concerned about was often food that worked its way under her tongue or between her teeth and her lips, and she seems to have forgotten how to use her tongue to collect the food and reposition it for swallowing. I found that giving her a spoonful of juice helped to flush this food out, and followed this strategy quite successfully.

So. Two creme caramels, a yoghurt and 300 ml of thickened juice. Doesn't sound much but for me it was excellent progress, and the quality of her interactions was the icing on the cake.

And she let me kiss her goodbye on the lips, and smiled at me when I left.

Maybe I will risk a little more hope. 

Machines Not Working Properly

Good Nurse phoned at 8.23 to tell me that the fax had arrived, she had taken the blood from Rosemarie and it was all ready to go. Five minutes later I was in the car heading towards the Care Home. The traffic melted away before me and I arrived twenty minutes later.

The test request and the blood sample were put in an envelope marked Pathology Dept. I asked for their number of the dept so I could give them a call on the way and check where in the hospital they were. It didn't immediately strike me as the sort of place visitors would commonly go to. I was given a number. I got back in the car and headed off to the Mayday Hospital as was, or as we should now call it: Croydon University Hospital.

I found a parking space on  the road outside and went to the machine to get a ticket. I started to get an inkling that things might not be going as smoothly as the evaporating traffic had hinted.

The notice said: 80p for 30 minutes, £1.60 for an hour. I checked my pockets (I hardly seem to use cash any more) - three pound coins and a few coppers. Fair enough. Half an hour should be plenty. I put a pound in and pressed the green button, not expecting any change. I looked at my watch. 9.15. I picked up the printed ticket. It read TICKET EXPIRES 09.25. I looked at my watch again. Yes, definitely 9.15. I looked at my phone. 9.16 now. 

There was nothing for it. I put my last two pound coins in the machine. I checked my watch. 9.16. I printed the ticket. EXPIRES 11.12. What?

I made my way to Hospital Reception, realising I hadn't actually phoned ahead. Three polite and apparently eager people waited at the counter. What could they do to help me? They could tell me where the Pathology Department was. Why did I want to go there?  I explained I was dropping off a blood sample for urgent testing. Ah. I didn't want Pathology I wanted the Walk In Blood Test department. No I didn't think so - the envelope was clearly marked Pathology. 

No further help was forthcoming. The location of Pathology was obviously a state secret and they very generously told me where they thought I should go and where the nurse would be very happy to help me. I thought about this for a moment and decided to give them the benefit of the doubt. I could always ask someone else. 

I easily found the almost entirely empty room that led to a row of cubicles with people already being bled. There was no friendly nurse in sight, just a prominent ticket dispensing machine and a large notice telling me to take a ticket. I waited for someone to appear. After a couple of minutes a nurse appeared from the cubicle corridor.

I opened my mouth.

"18 and 19", she said, before I could say anything. There was a shriek of joy from behind me from two people who had just moments before entered the room and taken a ticket each. In a blaze of happiness they leapt past me and were marched away by the nurse. 

I shut my mouth.

A couple of minutes later a door opened further along the room and a nurse entered. My determination to speak was apparently obvious because she stopped and asked if she could help.

I explained that I had some blood to be tested urgently and had been trying to deliver it to Pathology but Reception had insisted I bring it here instead.

She opened the envelope and swiftly perused the contents. "Leave it with me."

"It's urgent."

"I will take it upstairs right away."

I waited. She didn't move.

"I will take it upstairs right away."

I gave up, thanked her and made my way back to the car.

A Worm Of Doubt was eating me all the way home. As soon as I got in I phoned the number I had been given for Pathology, to check that the blood had arrived. Completely different department. 

I looked up the number of the hospital and went through the mandatory button pushing exercise you have to suffer in order to speak with anyone these days. I got through to Pathology and politely explained that I wanted to check that the blood I had handed in half an hour earlier at Phlebotomy (as it was correctly called) had indeed been brought up 'right away'. She asked me for the necessary identifying details (name, date of birth etc.) and looked it up on her computer.

Of course it hadn't.

But wait! Was I sure it had an URGENT sticker on it? I tried to picture it. I certainly did not recall any colourful eye catching label so confessed I probably thought not. 

"In that case, it wouldn't come here anyway. If it is not marked as urgent, GP requests for blood tests are sent to a different hospital."

I felt the blood singing in my ears. Which hospital? St. George's. When does it get taken there (expecting the answer "At the end of the day")?

Ah, every hour. The hospital has a busy Phlebotomy Department and a testing lab but all non urgent tests are sent by courier somewhere else, every hour. 

But it must have gone with the 9.30 batch. Or at least the 10.30 batch. It had to be there soon. There should not be a problem getting the results today should there?

Just after 11.30 the phone rang. It was Good Nurse - maybe the results were back already.

They weren't. Rosemarie had suffered another seizure.

Everything went dark for a moment.

She had bitten her tongue quite badly and had been very distressed. She had been given 10 mg Diazepam as a suppository and was now sleeping.

The doctor (the one I spoke to yesterday) had been called and was expected early afternoon. 

When I arrived Rosemarie was lying asleep in recovery position on the bed. She looked exhausted. Her lips were swollen where she must have been biting them. She looked very small and very frail.

Our friend Phil, who usually visits her on Wednesdays, was sitting with her, looking worried. She said Rosemarie looked a lot better than she did when she arrived - she had been really frightened at how ill she looked.

We sat there for some time, talking in low voices and looking at the small, sad figure on the bed. Every now and then her eyes would flutter open and she would look around her like a frightened child, and either Phil or I would go over to her and stroke her arm, hold her hand, and try to comfort her. She would make some low, soft noise and her eyes would close again.

Shortly after 2 the doctor arrived accompanied by Good Nurse and, for a brief period, the Care Home Manager.

The doctor was pleasant, intelligent, patient and thorough. She started by announcing that she had already made out an open ended prescription for saline should it be needed (she had presumably heard about the problems of supply previously). She examined Rosemarie and said she could detect 'crackling' in her lungs and so was likely still infected. Good Nurse said she had just started her on the next course of Amoxycillin.

We talked at some length about the Clonazepam. According to the doctor, any change in the dosage of medication of this type, up or down, can cause problems that result in seizures. She suggested, and I agreed, that we should not restart the Clonazepam unless there was no alternative, and even then it should be in liquid form at a much lower dose. It was generally agreed that the risk of another seizure was outweighed by the increased chance of her taking food and drink if she was more alert.

I felt guilty about the almost casual way I make these decisions for her now. I think I have learned that thinking too much about them paralyses me with indecision. Being her legal guardian means making decisions, not avoiding them.

The other, invisible person in the discussion was my favourite Neurologist, whom Good Nurse had phoned more than once during the day, I assume, and whose opinions and recommendations she kept introducing with absolutely no opposition. 

The discussion ran out of steam after a while because we couldn't decide the main things until we had the results of the tests. She said that Rosemarie's last recorded sodium level (before she had the drip) was 157  mmol/L, and the safe, 'usual' level was under 145. She said if it had gone down at all she would recommend starting the saline again. 

She left promising to call as soon as she had the results.

So 5.30 came and went (when the lab was supposed to close), as did 6, when the doctor's surgery was supposed to close. No news. Rosemarie woke up though and I had no problem giving her 100 ml of juice before she became drowsy again.

Shortly after 6 Good Nurse arrived and said the doctor had rung her and said she had been in touch with the lab and humma humma humma. I didn't really get the communication. Something about them still doing testing but the level was about the same (?). Anyway, the main thing was the doctor had spoken to the Rapid Response Team and told (convinced?) them to come and set up a drip tonight - one litre over 24 hours.

The District Nurses duly arrived just before 7 ('sometime after 6') and briskly set up the drip, but treating Rosemarie with a warm and caring consideration that absolutely stole my heart. They had even brought a spare bag with them.

So some machines did not work properly today. Croydon parking machines have their own special mathematics. I deliver a blood sample to the 'designated' hospital before most people would have finished the Starbuck's coffee they bought on their way to work, but the test is still not complete by the end of the day. 

But other things do work. Traffic dissolves, antagonists become partners, and the invisible Neurologist hovers like the ghost of Obi Wan Kenobi watching over us all...

Drips and Buffers

Yesterday the routine hit the buffers.

I thought we had established that we were going to rehydrate Rosemarie using the drip as the major contributor. What this fails to take into account is that the saline is actually prescribed by her GP, and usually only one or two days at a time. The Home has to phone up and request a repeat prescription, but because of the fact that it is a group practice it is not always the same GP and different GPs have different opinions on what to do. Her designated GP was on holiday yesterday, and the GP who took the decision wanted to limit Rosemarie to one more bag of saline and then review it Thursday when her GP was back.

Not good but I thought I could live with that, until Good Nurse came in at supper time and told me she had just received a call from the doctor and Rosemarie was not getting any saline at all. The doctor had spoken to the Rapid Response Team, who were of the opinion that she had already had in excess of what was advisable. That was it. No more information.

I tried to call the doctor but had to leave a message with the receptionist, asking that I be called back as a matter of urgency.

I occupied myself getting Rosemarie to take 200 ml juice and 3/4 tub of Nutilis. Baby steps but in the right direction.

I was just about to leave when my phone rang. It was the doctor, sounding a lot more polite and reasonable than I had imagined her and we proceeded to have my favourite kind of Educational Conversation.

It is probably a fault but I find it frustrating to be given decisions/conclusions without knowing the reasons, particularly when it concerns something or someone I care about. I don't consider myself stupid and I have never had problems understanding any of these medical issues once a few details have been explained to me. 

And so it proved. The argument wasn't as simple as I had thought it to be (which I expected). Saline does contain some sodium and whereas intravenous delivery is reliable and predictable subcutaneous delivery is a lot more unpredictable, and for that reason they prefer to monitor the sodium levels after every few litres of saline, and Rosemarie had indeed gone considerably beyond the normal testing point. 

The doctor understood my concern but pointed out that if the saline had been doing her good she should be somewhat rehydrated and could probably cope easily without saline for 24 hours. If the saline was causing her problems we should stop it anyway. In any case we needed to find out by doing a blood test (which I had actually been advocating for several days).

So she would fax through a blood test form first thing in the morning, Good Nurse would draw the blood, and I agreed to run it to the hospital early morning (the scheduled courier only called in the afternoon) so the test results would be available same day. Rapid Response would be on standby to race in with some saline if the test results supported that decision. 

I felt relieved. My biggest worry had been that people were making decisions on faulty data, and that didn't seem to be the case.

I sat by Rosemarie stroking her arm and trying to reassure her. She was sleepy after the effort of eating and drinking and her eyes kept closing. I told her that she was doing fine and needed to have more fluid and start eating some food. I said everyone was doing all they could and she had to hang in there. 

I stroked her hair and kissed her on the forehead, and drove home hoping it was true.

Granddaughter

Things have settled down into a grim, deadening routine. 

The last few days of the Clonazepam leave her drowsy in the morning and unwilling to even try breakfast. She may have some thickened juice mid morning, maybe 150 ml, and a small portion of a pot of fortified Nutilis Stage Three. I may get some more Nutilis in her during the day and she will probably have another 200 ml of juice, but she is not interested in hot food, and needs constant reminder and encouragement to swallow what she does allow in her mouth.

The drip seems established as a routine now but the daily effort to change it continues to be a comedy of errors. Last night the two district nurses arrived to change the bag and asked where the replacement was. We told them they should have brought one with them. They were adamant that they never do this. The home supplies the saline. Infection control reasons. In fact, the daytime staff (who work until 10 p.m.) don't even have access to any saline. They would have to contact the night staff and get them to find some and bring it. 

I think we now know why 'sometime after six' is always so late.

She is still dehydrated and losing weight. She seems more alert each day and has regular smiles for the care workers (but not me), and is sometimes quite vocal, and there is no chestiness, but she seems to be freewheeling rather than recovering. Grim.

There are heartwarming bright spots. 

My daughter and son-in-law brought my granddaughter Ivy to the Care Home on Saturday. They had brought her before, last Monday, when we thought everything was ending, but Rosemarie was semi conscious the whole time and was not aware of anything. 

Saturday was different. She doesn't usually register people now, but her body language suggested she was picking up on something. I had talked about Ivy coming to see her for several days hoping the idea would register, and my daughter loudly and clearly introduce Ivy to her grandma. 

Rosemarie cannot reliably use her left arm any more so we used the duvet to make a sort of pillow above the arm and rested Ivy there. Rosemarie did not look at her but clearly could feel something there and her right hand came round and started to  stroke Ivy's leg. It looked like she was cuddling her, and Ivy responded by snuggling up and falling asleep.

It was beautiful. 

I don't know how much she really knew about what was going on and it is all too easy to read too much into it. I know Rosemarie has been desperate for grandchildren to spoil for many years, and I would like to think that a baby in her arms brought some kind of memory back. It certainly looked that way in the pictures that I took, and hopefully they will look that way to Ivy when she grows up.

And asks about the grandmother she can't remember.

Every Day Is Another Victory

I must be careful where and when I hope.

Yesterday I got there before 'lunch' (not even attempting to feed her at the moment) and was greeted by a Rosemarie transformed before my eyes. Eyes open, pulling faces, the occasional verbalisation and no apparent trouble breathing. She had apparently had some juice and a couple of spoons of porridge and a little of the Nutilis Stage Three. This was all great news.

She had not had Clonazepam for 24 hours (missed 2 doses) and it showed. She seemed active rather than restless and I kept telling her that her granddaughter was coming to see her at the weekend and she almost seemed to respond (I am careful where I hope. Apophenia lurks everywhere).

I sat holding her hand and chattering nonsense until Good Nurse arrived with the news that Rosemarie had not been passing urine and they were going to fit a catheter. She was going to show another care worker how it was done so she asked me to wait outside because otherwise she would be nervous. I think it is a bad strategy to fight everything on principle so I agreed.

It obviously did not go well because in the end it seemed to require all the female nurses in the Home trooping in one after the other helping/giving advice. In the end the deed was done and without unduly distressing Rosemarie, and she immediately passed 500 ml of urine into the bag, the colour of which made it clear she was still severely dehydrated. 

The Neurologist called in as promised shortly afterwards and sprinkled her usual support and common sense over everything, examining Rosemarie, checking and adjusting the settings on the drip, and interrogating the staff. She left, telling me she was on duty all weekend and I should call her if I was worried about anything. She isn't even directly involved any more.

I must be doing something right to deserve people like this.

Rosemarie started to get drowsy (she had not slept at all since she woke up in the morning) and happily took some juice (although she refused food) and was still relatively alert when my son arrived from work. He was profoundly relieved. We sat for an hour or so with her waiting for the District Nurses to replace the saline. This is always supposed to happen 'sometime after six' but that seems - and has been shown to be - a very elastic timetable for a group called the Rapid Response Team. I would have thought there was a clue in the name....

We left before shift change to head off to my daughter's house to discuss Rosemarie's funeral. We have been advised by several people. including a family member who owns a funeral business, that it is a good idea to give some thought to this matter before we have to, because if we wait till the decisions are forced on us we are going to risk making hasty decisions in an emotional whirlwind and rue it later. 

It wasn't as grisly as I thought it might be and I am very glad we did it. A few glasses of wine helped.

Back to the Care Home today about three in the afternoon to find her still relatively alert. She had a Clonazepam last night (they are reducing the dose slowly. She has stopped the morning dose and will stop the evening one in a week) and was slightly drowsy but nothing like she has been recently. Still not eating but taking a little fluid and, most importantly, taking her medication. 

Still ongoing problems with the supply of saline, straight out of a West End farce. The nurses arrived last night about 11 p.m. (which admittedly is 'after six') but seemed to think it was a Nursing Home rather than a Care Home and there would be nurses qualified to change the bag so they just left it in Reception, By the time the duty nurse realised this they were long gone. She phoned them and they said they would come back as soon as they could, which turned out to be 3 a.m.

It appears they then concluded that because Rosemarie was supposed to be having 1 litre every 24 hours and they were 12 hours late with the replacement, they should speed up the drip so she got 1 litre in 12 hours. So by the time I arrived it was all gone, and they were not coming back until.....'sometime after 6'.

I am not making this up.

I complained to the Good Nurse and the Care Manager (who is actually qualified to change the bag) and they found more saline from somewhere (I think it had been left by the District Nurses during an earlier episode of the farce) and Rosemarie was hooked up. They did not know what rate they should set so the Care Manager decided on a phenomenally cautious one drip every two minutes, and phoned the Rapid Response Team and told them to adjust it as required. I wasn't on the call so I have no idea if they will be bringing any more with them and what time they actually expect to arrive. They had not arrived by the time I left this evening and she told Good Nurse to adjust the rate to 10 drops a minute. This should safely last the night, but tomorrow is so another day...

I am still deeply worried about Rosemarie. She hasn't eaten anything substantial for over a week, but the plan was to fix one  thing at a time and so far it is working. She is taking the antibiotics (and the course has been extended) and she is being slowly rehydrated. She is intermittently taking fluid orally and is more alert.

A world away from how it seemed a couple of days ago, but that is still a world very close to the edge.

But I hope to sleep better tonight. I will risk  some hope on that. 

  

Grinding Metal

[Edit One]

I want to start getting this down while it is fresh in my mind. If I miss anything or run out of energy tonight I will edit it tomorrow.

A Medication Review was scheduled for today and in light of the change in Rosemarie's condition I tried to contact the Community Psychiatric Nurse yesterday to check whether it was worth going ahead. She wasn't there and so I left a message. She rang me at 9.15 this morning and said we should go ahead.

I am extremely glad we did.

The first order of business was to get the next bag of saline prescribed. I phoned the duty nurse and she said she had been trying to contact the GP but hadn't got through. She did say that Rosemarie had taken her medication but not eaten any breakfast. Her breathing was no worse and no better than the previous night. 

I had an early lunch and phoned back to check how things were going. Apparently two bags of saline is all you get. Something about too much fluid being a bad thing (not what the District Nurse had said Monday night). The nurse promised she would phone the GP again and say I was asking for options. 

I arrived early for the meeting and as I was taking my coat off the nurse came in and handed me her phone, saying the GP wanted to speak to me.

This was not the GP who had seen Rosemarie. He was away. This doctor was going mainly by his colleagues notes from Monday, and not even taken into account today's vital signs measurements. The gist of his communication was the Rosemarie Was Dying, and the thing now was to make her as comfortable as possible while this happened. It could be in the next ten minutes, this evening, tomorrow or a couple of days time. Maybe even as long as a week. He didn't endear himself to me by telling me that Only One Person Knows How Long She Has Got. I ignored this and said that removing the drip was a death sentence because she was refusing to drink anything and she would not survive long like that. And what was the problem with the drip?

Apparently the problem is that she has raised level of sodium in her blood (because of dehydration). Saline has sodium in it. Therefore giving her saline might raise her sodium level more and that was a Bad Thing. So no saline.  Any other option? Maybe Dextrose, but they may not supply it to Care Homes. I didn't bother to ask why not, I just put on my best polite voice and asked him to try. He said he would talk to the Rapid Response Team.

The call left me feeling like I had been kicked in the stomach, and I was less than 100% as I picked up my notes and headed to the Review.

I started by explaining Rosemarie's current condition and the prognosis I had been given. This raised some eyebrows round the table, particularly the comment about saline. The Psychiatric Doctor said that there was only a tiny amount of sodium in 1000 ml of saline and he thought it well worth the slight risk, since rehydration would bring down the sodium level anyway and withdrawing the saline would definitely raise it. The Neurologist agreed and said she would speak to the GP (I felt sorry for him already) and also said that she knew the Rapid Response Team well and would talk to them too.

We then got onto the subject of Clonazepam. I shared my concerns about the increased dosage and illustrated them with some pictures I had taken of Rosemarie slumped drowsily in the chair. The dose was instantly halved with the intention of reducing it to zero in a week. 

The Doctor then dropped the bombshell that if it had been making her that drowsy it may actually have been contributing to the problem. A drowsy person is less likely to be interested in eating and drinking anyway, and especially if it involves swallowing past a load of phlegm in the throat. It follows that it may also make aspiration more likely, especially if the person is already having difficulty swallowing. 

The rest of the review was almost an anticlimax. It was agreed that it was no longer a Community Mental Health responsibility and it was time for Palliative Care to take over advising/directing the GP. The Neurologist was not technically involved either but she had a wonderful I've Started So I'll Finish attitude and said she would return to check on Rosemarie the next day. 

She came back with me to the room and examined Rosemarie herself. She pronounced that she seemed comfortable (little clues I had missed so I had been unable to answer the question in the meeting) and that the dose of Glycopyrronium could and should be doubled.

She also checked the saline bag and said that the rate could be reduced to make it last through the night. I cautiously raised my concerns and confusion about the fluid level requirements given by the dietician and the alleged danger of giving her too much fluid,

She explained that Rosemarie's body was fully occupied fighting the infection and the priority was to look after her liver and kidneys and brain and worry about full rehydration later, and not give her system anything unnecessary to do. Simple. 

With a few more kind and sensible words she left to chase up the GP who was not returning her calls and the Rapid Response Team who were not answering at all.

Shortly afterwards the nurse came back to check Rosemarie's vital signs and give her the days final dose of antibiotic, which she promptly spat out. Left alone with Rosemarie I felt my recent more optimistic frame of mind withering. Her breathing seemed more tortured and the swallowing impossible. The calmness induced by the meeting was being overwhelmed by distant cold panic again. 

The nurse came back to administer the Glycopyrronium and made things worse. She listened to Rosemarie for a while and looked me in the eyes and said "This is not good." I asked whether she thought Rosemarie would last the night but she said she didn't know. 

So that was useful. How am I giving off this signal to certain people that makes them think I am not facing up to reality?

I sat there for another two hours through the shift change holding Rosemarie's hand and listening to her struggling to breathe. I wondered if I would have the courage to go home. 

But as the time crawled by her breathing began to change. The noises became less liquid and more rasping. At first I was worried that it was some new deterioration but it then occurred to me that this could be the injections working. If the phlegm was drying up the gasping, open-mouthed breathing she was doing would start to sound like that. I felt myself begin to relax, and even entertain a little hope. 

Then she strained and coughed up another mouthful of phlegm from her chest and swallowed it with no apparent problem. 

Shortly after she seemed to pass from semiconscious to a light sleep. Her breathing was definitely easier, shallower, quieter. 

Is that a good thing?  I feel after today that I don't know anything.

I finally came home, convincing myself she will make it through the night. I know that the most  we can expect, if she gets through the next 12 or 24 hours, is a partial recovery and a nervous wait for the next infection. 

But every day is precious to me. 

   

Dodging The Bullet. Maybe.

I did not sleep well, expecting at any moment the ringtone of my mobile. As is often the case I fell properly asleep just before the alarm went off, and my addled brain actually heard the alarm as a ringtone.

I rang the Care Home before the night shift handed over to the day shift, and spoke with the duty nurse, a young and efficient Romanian woman, who told me that Rosemarie had passed the night without incident, but was still drowsy and not breathing easily.

I got dressed and tried to occupy myself until the day shift had a chance to take over, check on everyone, and do the breakfast and the medication round. 

When I finally phoned I was told good news. Rosemarie had taken her medication - actually swallowed it, eaten three spoonfuls of porridge, and drunk 50 ml juice. This was a transformation from last night. Her breathing, however, was only slightly improved, and she had fallen back into a deep sleep. The duty nurse also told me she had asked the GP to prescribe Rosemarie Glycopyrronium bromide, which would help reduce the production of phlegm in her throat, and could be injected as required by the nurses. This, combined with a suppository version of paracetamol to address the UTI pain, was starting to cover the bases.

By the time I arrived early afternoon she had been woken and given a second dose of medication, which she swallowed, and had refused to have anything to do with eating lunch, falling back into a deep sleep.

I was not so sure about this 'sleep'. It seems to me an alternation between unconsciousness and some form of delirium. Even if her eyes are open she rarely responds to any stimuli and makes no sound. As always it is practically impossible to tell whether she is in pain and although she must be distressed at what is happening she does not seem to be able to communicate it.

We had more of the long cycles of breathing, coughing and choking throughout the day but as the afternoon wore on her vital signs became more normal. As the fluid in the bag shrank my optimism grew. 

She is still not getting enough fluid to rehydrate her, not by a long way, but what she is getting is buying us time and every dose of antibiotic she swallows brings her away from the edge.

There were times during the day when I questioned whether I had overreacted yesterday, but I really don't think so. It certainly felt a critical time and when I first saw Rosemarie my heart froze. I am so glad I insisted on the drip. 

When I left tonight she was still breathing like a hookah and had a film of sweat across her forehead. She had not eaten anything apart from those three spoonfuls of porridge and had not accepted anything from me, although she did take her third dose of medication from the nurse. She was getting another litre of fluid tonight but I already sense a looming battle about how long we can keep it going: I spent a useful half hour summarising the food and fluid intake notes and crunching some numbers in readiness.

But my main feeling today is as if a car has just thundered past, missing me by inches. 

Breathing

I had nearly reached the Care Home when Good Nurse called me and said the Doctor was there and wanted to speak with me. Rosemarie, he said, was very ill and would no longer swallow her medication or necessary fluids. The choice was to go down the traumatic Hospital route or pass her over to the Palliative Care team to make here as comfortable as possible. 

Glad to have a captive audience I rolled out my questions. It turns out Care Home nurses - even Rapid Response Team nurses, cannot give initial injections of antibiotics, apparently in case there are serious allergic reactions. Nor do they like giving intravenous drips - although subcutaneous drips are ok. 

I am still convinced that the swallowing problem is not terminal yet and she still knows how to swallow if she is not dehydrated, delirious and feverish. I said I was not giving up on Rosemarie and there had to be a solution. It appeared there was. She could be admitted to hospital for the initial injection, then returned as soon as it was known to be safe. The assorted nurses could continue with the course of injections and rehydrate her. Not ideal but close. The doctor said he would arrange it and ring me back.

I was parking when he rang back to say that he had spoken with a consultant at the hospital and the deal was off. The hospital was not prepared to take her under those terms.

I finished the conversation face to face as I came out the lift. We agreed to get the Rapid Response Team to come and rehydrate Rosemarie and see if that was enough to encourage her to swallow the medication.  There was always the ultimate option of hospital but that was truly the last resort.

I went to Rosemarie's room and I was shocked by her condition. She was lying on her back, head tilted back and mouth open, struggling for breath. At times her stomach seemed to spasm in the effort to breathe. 

I let my son and daughter know the situation and sat down to wait. This was a hard time, and I had a very real fear that any breath might be her last. I sat as close as I could, holding her hand and talking to her through an intermittent curtain of tears.

She showed no signs of knowing I was there.

After a while I calmed down as I noticed a pattern. She would have a period of fairly easy, chesty breathing that would become more and more laboured, until there was an explosion of coughing/choking/gasping and she would struggle to swallow the phlegm in her throat. After a tortured eternity she would manage to deal with it and the whole cycle would begin again. 

After about an hour my daughter and her husband arrived with our first grandchild, who Rosemarie is yet to see. Sadly Rosemarie did not open her eyes for the couple of hours that they stayed, and they left about 5 with her still not having seen her granddaughter.

Shortly afterwards the Rapid Response Team arrived with a drip and other gadgets, but most importantly the brought with them the relief that comes when you feel something is at last being done. 

They took her stats, some of which were worrying. BP 100/60, pulse 80, temperature 39.7 and oxygen at 84. They briskly set up the subcutaneous infusion and bustled out, promising to return in 24 hours to replace the bag of fluid.

My son arrived shortly afterwards and we began another long wait. The nurse came in and replaced Rosemarie's heavy duvet with a light sheet, and she seemed instantly more comfortable. 

Over the next few hours her breathing followed the same cycle but my familiarity with it or maybe just my imagination made it seem easier. Her temperature was taken again and had dropped. She seemed to pass from an absorbed cyclical fight for breath to a fitful sleep with regular interruptions. 

As the staff changeover went through its ritual and the Home settled down to its evening calmness I was overwhelmed with tiredness. I took the elephant that was sitting on my head, and drove home with my son. 

I fell asleep still not knowing what I felt.

Shuffling Towards Oblivion

Rosemarie has another chest infection.

Nobody seems sure when it started: we only started to hear the chestiness on Saturday, but with hindsight the nurses are associating the drowsiness with the infection rather than the increased dose of Clonazepam. Her appetite was reduced for the last half of the week and, more worryingly, her fluid intake fell off a cliff.

We have been here before.

For most of the past week visiting her has consisted of sitting by her side and watching her sleep. She could usually be woken up to eat, but it became a tedious business. By Wednesday I was having to wake her up for each mouthful, and constantly remind her to chew and swallow. By Friday I was lucky to get her to eat half a dozen spoonfuls.

I was able to feed her fluid though, half a spoonful at a time, maybe 50ml in half an hour. She seemed genuinely thirsty but lost interest after the second spoonful and I had to wait for a few minutes before it was worth trying again.

Saturday there was another change: she was still very drowsy but she opened her eyes slightly and lay there gazing into space, not responding to anything. Antibiotics arrived Saturday night and she started the treatment. 

Sunday I did not even try feeding her, and concentrated on trying to get some fluid into her. The nurse on duty said she had no luck but I was able to give her about 20ml: not much and nowhere near enough, but better than nothing.

Then this morning Good Nurse phoned me (she was back from a few days' leave) to tell me that she had checked Rosemarie's pad and she now was also contending with a UTI. She also refused to swallow her medication and nobody had been able to get her to take any fluid at all. Good Nurse had spoken to the doctor and someone was coming out to see her. I am waiting to be contacted when the Doctor arrives to talk about what can be done.

I am trying to understand why trained nurses can't put in a cannula and give her fluid through a drip. Or why trained nurses cannot give antibiotic injections. There seems to be immense reluctance to talk about this. It seems there is some kind of demarcation between what a Care Home does and what a Nursing Home does. I am going to have to dig deeper because I didn't get a straight answer from Good Nurse. 

She also asked my consent for passing Rosemarie's details onto the Palliative Care Team - something I thought had already been done, and asking me to give the Home authority to start or change medication or treatment in an emergency if they can't contact me for consent. I agreed but there was a chill in my heart. 

This is not looking good. 

Palliative Care

I remember the last time I felt the earth moving under my feet, and the way all the stabilising gyroscopes rocked and realigned in a new, colder configuration. It seems like a very long time ago.

Just over a week ago I had a meeting with a Palliative Care Nurse from a local hospice who provides advice and training to the Care Home staff in End Of Life Care. Rosemarie had already had an assessment (to which I was not invited) and this was apparently the follow up meeting to talk to me about....something. I know what palliative care is. I know the sequence of events that precipitated this. 

I felt the gyroscopes wobble slightly.

I was not particularly looking forward to the meeting because I know how I react to these things. Most of the time I have to keep it together because there is stuff to be done, but when I have to talk directly to the issue of Rosemarie's condition I find the emotions welling up and I have difficulty speaking. I am not embarrassed about this, mostly frustrated that I so easily lose control of my facial muscles and tear ducts.

I carried into the meeting a few pieces of shrivelled up anger about not being there at the assessment but the nurse was so pleasant that I quickly let them go.

What I wasn't prepared to let go was the strong feeling that we were crossing some line for a bogus reason. Rosemarie's recent hospitalisation seemed to have been more significant to the Care Machine than to me. I had been told two years ago that we had crossed a line into the last stage of Rosemarie's life and to think 'in terms of months not years'. Two years ago.

She didn't lose nearly three kilos in weight or become seriously dehydrated because of three days infection. Her situation was flagged up to the Safeguarding Team by the hospital because there were concerns about the general standard of her care. The progress of the disease is presenting the Care Home with new challenges, but isn't that what a care home is for?

I am not convinced the problems with her weight and hydration are entirely the result of her underlying condition. I think the Care Home have collectively taken their eye off the ball.

But this is where it gets difficult. I didn't (and don't) want to come across as denying the reality of what is happening. I know she is dying, but it is not the Alzheimer's that will actually kill her. As far as I can establish (and I discussed this with the nurse at length) the deterioration in the brain is responsible for failure in body functions. We are at the stage where aspiration can cause lung infections, and the downward spiral of declining appetite and declining hydration. The SALT thought that she was two weeks away from death when she visited. She has forgotten how to walk, speak and manipulate things.  She is losing the ability to swallow safely. She is having seizures which introduce the risk of choking. 

The nurse said the next stage was likely to be increased problems swallowing, more aspiration and more chest infections.  

I have had so many years of looking for solutions to her problems, trying to handle the situations, that I find it hard to accept the idea that it is time to stop that.

I said as much. Alzheimer's - at least Rosemarie's manifestation of it - is not like cancer or other diseases that palliative care professionals talk so easily about. The goal of managing pain, providing comfort and optimising her quality of life sounds great in principle, but what does it mean for Rosemarie in practice?

She can't make her needs known, it is not clear what distresses her, and we have no real way to evaluate her quality of life. We don't even know how much she knows about what is now happening to her. I don't think she recognises when her family are around her, she doesn't seem to respond to what used to be her favourite music, her favourite foods have been taken away from her, she cannot read, draw, follow stories, watch television, look at pictures, talk to old friends or visit once loved places.

So what is the plan exactly?

I can see the other part clearly, psychological and counselling support for the family, spiritual support if wanted (no thanks), bereavement counselling and so forth. 

But for Rosemarie?

We have been addressing and managing her symptoms and practical difficulties one by one, expressly for the purpose of trying to improve her quality of life. That's what the last five years have been about. What is going to change? I am not sure I got an answer. 

The only alternative as far as I can see is to somehow restrict the management of the symptoms, in effect 'turning of the machine'. What would that mean? Tranquilising her so she did not know what was going on and waiting for her to starve to death or catch a fatal infection? Nobody is suggesting that, to be fair, but they are not exactly suggesting anything else either.

I think the meeting was basically to make sure I was not in denial, and prepare me for things to get worse at some unspecified rate.

So the meeting was calm and supportive and I cried more than I wanted to and we talked about Rosemarie ending her days in the Care Home rather than hospital (home is not an option) and that the staff were very good and well trained and would make Rosemarie as comfortable as they could (shouldn't they be doing that anyway?) and here was her phone number if I had any other questions and wanted to talk. 

The nurse was very considerate and tried to be helpful but I left the meeting no lighter, no wiser, with red eyes and a reacquaintance with the cold, dead space in my stomach. 

The gyroscopes were ok though.

Mother's Day

Today was hard.

Rosemarie loved being a mother so much, even during the bad times. She loved our children unreservedly and to me it seemed Mother's Day always had a special magic about it. 

Not any more. 

I can't find notes for last year's Mother's Day but the notes around that date suggest a distracted Rosemarie having real problems communicating or understanding anything. I certainly don't remember it as a glowing success. The year before she was in hospital. 

The family were there today: my daughter still bearing our overdue first grandchild, her husband and our son. There were cards and presents and kisses and hugs and lots of love poured over her.

But no Rosemarie.

There might have been a couple of flashes of half recognition and some chuckling apropos nothing, but no real communication or understanding.  She did not register the cards or presents - or people much - and seemed tired and agitated for most of the visit, leaning her head heavily to the right and moving her feet restlessly.

So all the family events now have a Rosemarie-shaped hole in them. Weddings, funerals, Christmas, birthdays, Easter, Mother's Day.

I passionately hope that something stirs in her when she is introduced to her first much longed-for grandchild. 

If only for a short, precious moment. 

Drowsy

When Rosemarie was initially in King's and began jolting she was prescribed Clonazepam 0.5 mg and has been on that dosage ever since. At the last medication review I raised this as something to be reviewed because it seemed to me that the jolting was getting worse.

Last Friday I had a meeting with a lovely nurse from the Palliative Care Team that advise the Care Home. This was the woman who had assessed Rosemarie previously in my absence. I approached the meeting with as much of an open mind as I could and any of my residual anger and frustration evaporated within a few minutes. It was a emotional encounter that I may blog about separately when I am ready, but I mention it because the topic of Rosemarie's medication came up.

The nurse had a lot of experience with Alzheimer's patients and was familiar with the jolting and the seizures. She pointed out that they were two different symptoms of same deterioration in Rosemarie's brain, and she suggested that increasing the dose of Clonazepam would actively work towards preventing future seizures. 

I mentioned this to Good Nurse and she raised it with the GP, and he suggested that the easiest way was to supplement the morning dose with an evening one. This started on Saturday.

As previously described Sunday was a Bad Day anyway, but by Monday it was clear that the increased dosage was having a significant effect. On the plus side, the jolting had virtually disappeared, on the minus side, she was sitting there motionless most of the time with her eyes closed to slits. She would open her eyes and respond if I tried to feed her the thickened juice but was much less interested in food.

By Wednesday it was clear that this was no temporary change of state. The feeding records showed that she ate almost no breakfast and was too sleepy to eat any lunch. With persistence I was able to feed her all her supper but she was almost dozing off between spoonfuls. 

This presents us with a bit of a dilemma. We obviously want to do everything we can to prevent future seizures and minimise jolting, but at the same time if she is not eating (she has lost 2 kg in the last week) then we have a serious problem. It is just about three weeks till the next medication review and at the current rate she could be a wraith by then. 

I spoke to Good Nurse and we discussed a Plan. As always it is about getting reliable data. Feeding her when she is sleepy is not ideal (the SALT recommended she should always be alert during feeding) but I have shown that with persistence it can be done. If the staff are feeding her in the lounge (as I suspect) and have several other residents to feed maybe they are just giving up, and reporting that Rosemarie is in fact too sleepy to feed easily. If this is the case the problem could be addressed as a management issue. 

Loss of appetite, incidentally, is a recognised side effect of taking Clonazepam.

So the plan is to monitor her food intake and weight for a few days and if the data continues in the current direction we will get the GP to reverse the change and see what happens then.

The other thing is that Rosemarie's delight in being in the new chair, so obvious on Saturday, is now muffled by her drowsiness.

Chairs

Last Friday a reclining electrically adjustable chair arrived for Rosemarie. It is on loan from the local authority OT Dept for a few weeks while we evaluate it and convince the Care Home to buy one for her. 

The OT who arranged it turned up to supervise the installation and to gauge Rosemarie's reactions (she said she could tell in the first few minutes if the chair was suitable). This is another professional I clicked with immediately: knowledgeable, clear and confident. She explained the features and operation of the chair to Good Nurse, two carers and me, and then Rosemarie was hoisted into it. Apart from the trips to hospital on a stretcher, and the aborted experiment on Christmas Day, I think this is the first time she has been out of bed in nearly three months.

Within seconds of being lowered into the chair and having the hoist straps removed she was smiling. I think I could see why. Her neck was supported, there was lumbar support and the whole thing was soft and comfortable. It was like a moulded sports car seat. I was trying to film it but there were too many bobbing heads.

We wheeled her around the corridors for a while to show her the lounges and some of the people she hasn't seen for so long. I don't think she recognised many (if any) but the change in scenery had a dramatic effect: she seemed much more engaged and alert. She began verbalising with clear intonation and started to move her arm in a much more purposeful way. 

Saturday was even better. Our friend Celia was down from Derbyshire to visit her and when we arrived we met Rosemarie sweeping round the corridor corner in her chair, smiling and chuckling, on her way to her room for a rest. (The OT had stated that Rosemarie should not be in the chair for more than about 3 hours and should be put back to bed for a rest if she showed signs of tiredness or discomfort). It was near supper time and Rosemarie seemed in good spirits so we went for a quick tour of the Home again. 

We fed her in the chair in her room at supper time and, as the OT predicted, it was a lot easier and quite a bit quicker. There was a regular 'chatter' from her which, although unintelligible, communicated good humour. 

Things began to unravel after supper.

Her room is quite small and the chair is unquestionably quite large. Getting the chair and the hoist in the room in the right relative positions requires well developed spatial skills. When the carers came to put her to bed they were confronted by Change and Change Is Not Good. There was much muttering about how the chair was too big for the room, how everything would have to be changed round, how the chair was all wrong, and how nothing would work. 

Good Nurse was supposed to do a new Care Plan to cover the new situation, and communicate this to other duty nurses and staff. I have never been happy with the way information is distributed at the Home - it is very hit and miss.

Sure enough Sunday saw staff come on duty who had never seen the chair before and had only a garbled message from Good Nurse about not getting Rosemarie up until I arrived (not accurate at all). None of the staff who had been trained by the OT were on duty, nor was anyone who had been around Saturday.

So, in the absence of any information they started making it up.

They got Rosemarie up just after breakfast and moved her into the lounge. They played around with the settings of the chair so it tilted back too far ("She might fall out") and lifted her knees far too high ("That's the best way to do it. I know about these things"). Celia arrived about 2.30 (I was off buying new nighties for Rosemarie) and discovered that Rosemarie had been in the chair for at least 5 hours. She was clearly uncomfortable and tired. Celia asked for Rosemarie to be put to bed and was told shortly that she had to stay up because the staff were too busy to keep getting Rosemarie in and out of bed. She would stay out until it was time to put her to bed for the night.

I am always acutely conscious in these situations that I am not there most of the time and it is unwise to piss the staff off too much (for Rosemarie's sake). I generally have a good relationship with the staff but this day everyone seemed stressed and grumpy and nobody seemed to be able to find any instructions that supported my case. The nurse on duty was unfamiliar with the floor and was clearly uncomfortable. I made enough fuss to be noticed and Celia and I concentrated on trying to make Rosemarie as comfortable as possible in the chair until she was put to bed.

It seems to have been the right amount of fuss because the following morning the Care Home Manager and Care Manager had a meeting with Good Nurse to discuss how Rosemarie was going to be managed. I wasn't invited to this meeting of course, but they pretty much accepted the plan suggested by the OT, and everybody seemed to fall over themselves to be nice to me when I arrived.

And then in the afternoon a technician from the Wheelchair Service arrived. In the dim distant past he had visited to reassess Rosemarie when she began seriously leaning. He said at the time there was nothing that could be fitted to her wheelchair to provide sideways support, but various things like padded arms, back extension, and footbox could help with other issues. He said he would arrange it.

Weeks turned into months and nothing arrived. Phone calls elicited the repeated statement that parts were on order. Rosemarie's deteriorating condition rendered the solution irrelevant. I did not think any more about it. 

But the OT who organised the loan of the new chair had gingered them up and I received a call out of the blue from the technician who had been asked by the OT to reassess Rosemarie.

He arrived with all the bits, but after one look at Rosemarie he agreed that her existing wheelchair could not be modified.

But it turns out there is another wheelchair they could supply from their stock. It is not as comfortable as the one we want but it is more suitable for trips outside and would be supplied free.  So we are getting one on approval in a few weeks when delivery can be arranged. Rosemarie can try it out and I am going to ask the OT if she can come and assess it. It would have to be phenomenal to oust the Hydro chair, but it could supplement it. One chair for indoors (longer term use) and a more lightweight but still supportive one for short duration trips out to the garden. So maybe if I can swing it she will go from having no suitable chairs to having two.

I think she is worth it.