Five Words

Friday 14th March was the day everything changed.

We had been trying to meet the consultant Dr Evans for some time, and today was the day it was finally going to happen. Normally I would go with my daughter but this time she couldn't make it so I was on my own. I wanted to know what the plan was because Rosemarie had been in hospital for nearly a month now and although the basic pain problem seemed to be solved we had traded it for one where she couldn't walk. I wanted an intensive plan of PT - ideally when I could be there. I wanted them to stop arguing about the Sertraline dose and sort out what seemed to be the persistent delirium.

I was taken to the Day Room for the meeting. The PT was the only person there I knew. Dr Evans introduced a Sister Mabel whom I had not met before and a junior doctor whose name I didn't catch. Dr Evans did all the talking.

She started by summarising Rosemarie's condition and it was a brutally honest and uncompromising appraisal that blasted the foundations from under everything I had wanted from the meeting.

Advanced Dementia, Very intense needs. Emotionally labile. Complex 24 hour care needs.

Dr Evans didn't think Rosemarie had ever had delirium. It was just the next stage of the disease. She was losing muscle tone and becoming increasingly frail.

She wasn't coming home.

Everything seemed to give way underneath me. I was trying to listen, ask questions, make notes and deal with what I was being told. I tried to challenge some of the conclusions but my voice sounded shrill and desperate to my own ears. I had been clinging to the hope that if we could get Rosemarie walking we could manage the rest but I could feel that dream beiing ripped from me by the reality of the situation. I might be able to get care organised for while I was at work, but I would be alone in the evenings and at weekends. The flat is not big enough to have a live in carer, even if that could be funded. Rosemarie's emotional distress was exhausting to witness and try to deal with when encountered in hospital for a few hours at a time; I would have to cope with this all evening, all weekend and possibly most nights.

Dr Evans had a form in front of her: an application for NHS funded care at a specialist care home. Care Home. The twisting guilt in my stomach. I had promised her I would not put her in a home. The form involved detailing her condition in order to evaluate her entitlement and define the sort of care package. Nineteen pages of questions and evaluations. The methodical, relentless slamming of doors. Her condition precisely described by ticks in boxes and terse medical statements that were designed to strip away self delusion and expose the reality. I could not argue with a single mark on the paper.

Tears ran down my cheeks and I felt my voice falter. I explained that we would decide this as a family and I wouldn't sign anything until I had discussed this with my son and daughter.

Dr Evans passed me the form and I looked through it again. I felt strangely still and empty as I turned the pages, but heavy and dead inside when I read again five words near the bottom of page fifteen that tore away the last shreds of my hope.   

End Of Life Care Plan.

Rollercoasters End At The Bottom

Two weeks of a punishing emotional journey that left me pretty much burned out. This is a long post. Make yourself a cup of tea or something.

Seeing Rosemarie in continual pain, or with it hanging darkly over her if she didn't have her medication, was one kind of torture. I felt for her but knew there was a strong likelihood that the cause of the pain could be dealt with permanently, or at least made easily manageable. Watching Rosemarie pass through wave after wave of distress, totally beyond any form of comfort, was a different agony entirely. Helplessness is its own special form of tragedy.

My daily notes from these two weeks are cruelly repetitive. Most days I arrived to find Rosemarie crying. Sometimes the nurses tell me she was alright in the morning, laughing and clapping and singing, but something happens around lunchtime and she gets distressed and tearful and this lasts for the rest of the day until exhaustion puts her to sleep. Or I arrive to be told she had a very disturbed night, trying to get out of bed, pulling the sheets off and sobbing uncontrollably. This lasts until the early hours of the morning, maybe three or four o'clock. She finally sleeps and will not wake for breakfast. She has to be woken for lunch and her medication. If the PT and OT arrive in the morning she is usually too sleepy to co-operate and the session is wasted. Forced to wake for lunch she eats little, is drowsy and irritated, and this develops into the distress I see when I arrive late afternoon.

And still flashes of hope. On Thursday 27th in the afternoon two nurses arrived from Neurology (No nametags. Very X-files) to attempt an EEG. As if Rosemarie would allow them to glue about twenty electrodes to various parts of her skull and face and then expect her to sit patiently for ten minutes without touching them.

Actually she did. I had to hold her hand the whole time and keep up a ceaseless chatter to keep her attention, and there was an interesting part where they had to get her to close her eyes for ten seconds (covering her eyes with a tissue was the clever plan). They seemed satisfied in the end and disappeared as mysteriously as they had arrived.

Kirsty the Speech Therapist turned up again and my daughter got to speak to her. Once again her input was clear, intelligent and unrelentingly positive.

PT and OT came by and had a very positive session where Rosemarie stood up several times without any real distress (although it does seem to tire her so we have to stop and the right time).

Spoke to the ward doctor Charlie who said the neurologists had come by to test whether the jolting that was affecting Rosemarie increasingly was part of the Dementia or a manifestation of another problem like Parkinson's or Epilepsy.

Early evening brought on the distress and sobbing. It did not stop before we had to leave.

The next day was a similar mix. A bad night, and she slept most of the morning. But the PT and OT arrived early afternoon and there was a very positive session. The nurses wanted to avoid bed sores so needed to swap the standard mattress for an air filled one. This meant Rosemarie had to get out of bed one way or another. They brought a wheelchair and after a few attempts we were able to get her to stand long enough for me to shuffle her along to sit in it. She sat there calmly and apparently happily while they replaced the mattress and inflated it. The journey back to bed was easy and evoked spontaneous and genuine applause. She obviously found it exhausting though because she fell asleep almost immediately and would not really wake for dinner.

Her day ended less happily. They were worried about a return of the urinary tract infection and needed a urine sample. The only way to do this was a catheter.

Not the best twenty minutes of my life.

Saturday 1st was a strange day. My daughter had bought me a wine tasting session and meal at Vinopolis for Christmas and the date couldn't be changed. This was the day. Our fiend Celia was down from Derbyshire and came with my son to make up the party.

Rosemarie was crying when we arrived but perked up when she saw Celia (who produced some strawberries that were very popular) and my daughter managed to wash her hair in bed. Apparently Rosemarie had enjoyed a good night, and even more amazingly, two PTs (not the usual ones) had arrived in the morning and, according to the notes on her file, had got her to walk FOUR METRES, and sit in a chair for some time between forty minutes and two hours (depending on who you asked) before returning to bed. This was phenomenal news and we wanted to speak to these therapists, but unfortunately they were elsewhere.

SIDE NOTE: We had been coming every day for about two weeks now, for up to seven or eight hours at a time, and we had developed (we thought) a good working relationship with the staff. We were not rude or particularly demanding, we were willing to help whenever we could, and in general we felt that the place was becoming a second home. Because of this, and the fact that we provided one to one supervision for Rosemarie, and taking into account the nature of her illness, the Ward Manager Amanda had said we could come any time we wanted (within reason). The Speech Therapist had encouraged us to bring things in from home that Rosemarie might recognise, so we brought a music player for her ballet music, her Day Book, and a small bromeliad in a round pink pot. In addition we had brought in a small kettle, teabags and a couple of cups so we could make tea without having to go down from the eighth to the ground floor to find out that the café was closed.

My daughter and I left at about 2.30 for Vinopolis, leaving our son and Celia with Rosemarie.

One of the things she was finding most distressing since coming out of the acute pain was using her incontinence pads. Because she could not sit and walk she could not use the commode or the toilet. She had to open her bowels and bladder where she was, lying in the bed. This is not particularly natural: she had spent almost her entire life feeling that this was wrong. We tried to reassure her that it was ok but she was usually very distressed and sobbing apologies and crying "No! No! No!". She then had the discomfort of sitting in a soiled pad until the nurses could change her.

While my daughter and I were gone they tried to use a bedpan with disastrous results. We don't know who it was but whoever it was did not understand Rosemarie's inability to understand instructions and limited ability to control her body.

My son was also told that no flowers were allowed in the ward and that he had to leave at the end of visiting hours (8 o'clock) even though Rosemarie was really distressed.

When my daughter and I arrived the following day we were told by the duty nurse that at handover that morning they had all been told we were not allowed to use the kettle.

We knew that weekend staff are not usually the best people to sort this type of problem out but we enquired gently what the reason was. This obviously caught them unawares because nobody seemed to know. We were told variously that plants were an infection risk, that some patients may be allergic to them, and they took up too much space. As far as the question of the kettle was concerned, nobody mentioned the understandable health a safety risk of boiling water (although we were extremely careful) but bizarrely that nothing electrical could be plugged in unless it had been tested. This is actually not unreasonable, and it is a quite common standard in business that all electrical equipment is PAT tested regularly. What made it less convincing as an argument was that nobody was complaining about the radios and phone chargers plugged in everywhere. Not to mention that none of the medical equipment plugged in around the place showed any trace of a testing label.

Rosemarie had not slept well the previous night and was sleepy and tearful throughout the day.

Monday 3rd was more of the same. Occasional good moments when she was 'dancing' and singing with Damilola (a lovely, sweet, cheerful nurse) but a background of tears and distress, and aborted attempts by PT and OT to get her to stand. They did get her to sit briefly in a wheelchair but she didn't like it.

We did sort out with Amanda that we were welcome any time. If we wanted hot water we could ask the nurses and they would get some for us, and the plant would have to be referred to infection control (translation: Leave it where it is). The ward doctor Charlie came by to report that the neurologists had ruled out epilepsy or Parkinson's and the jolts were part of the general condition and would be treated by medication. Rosemarie was also getting constipated again and she would be given a mild laxative.

Rosemarie's emotional state deteriorated rapidly as the evening progressed and she became very agitated, loud and abusive. She was very distressed when we left her.

And so it continued day after day. Bad nights, sleepy mornings, distress and tears. Not eating enough, not drinking enough, and only brief interludes of good humour, usually when she was interacting with Damilola or Kadeon.

The weekend of the 8th and 9th was particularly bad. Rosemarie started behaving as if she was in pain again (jacknifing up in bed, holding her stomach, and shouting "Make it stop!" and it was easy to imagine the cause was the constipation. However, if I asked her if her head or arm was hurting she would also say "Yes".  She was clearly in distress though, and was sweaty and clammy. She would sob and moan in a long crescendo that would end in a scream. She would flop back on the bed for about twenty seconds and the whole thing would start again. This would go on until she was so exhausted she would fall asleep.

It became clear as time went on that this was an emotional rather than a physical problem. When we could understand her sobbing words they seemed to be about her father, or not knowing what she had to do, or feeling useless. There seemed to be two distinct conditions. She would lie or sit up with her eyes closed, sobbing, face contorted in misery, and stammer the same syllable again and again in a high pitched voice. A firm "Rosemarie! Open your eyes and look at me!" would interrupt this for a few seconds, and she would speak more clearly in a much lower voice, but not seem to know why she was upset or even that she had been crying. This window would close after about ten seconds and her eyes would close, her face would contort, and she would start sobbing again.

By the Tuesday the more extreme agitation seemed to have passed but there was a much finer balance between tears and distress on one side and laughter and calmness on the other. The slightest thing could start the tears, and a chance remark or a look from one of the nurses could end them. The problem was there was no pattern to it and what worked one minute would fail miserably the next. And the tears and distress were much more common than the calmness and the laughing.

Wednesday and Thursday were much the same. I tried using the advice from the Speech Therapist - short simple sentences. "Rosemarie. There is nothing to be frightened about. You are in hospital. You have been very ill. You are getting better. You are doing really well." Works quite well. When it does.

"I don't know what to do," Through tears and quivering lips.

"Just eat your dinner. Start to walk again. Keep getting better. Then you can come home".

(Sobbing)

"We want you to come home. We miss you."

(More sobbing)

More Shadows of Hope

Wednesday 26th. A meeting at the hospital to discuss the next steps (code for Discharge options). My daughter was there, and we joined the Social Worker, the Registrar, the OT and the PT. The Registrar chaired the meeting, and we looked at the options for caring for Rosemarie at home. The SW agreed that if Rosemarie couldn't walk she would need 24 hour care and Lambeth would not fund that for home (it wouldn't be feasible anyway - the flat is too small for live-in help) but only for a placement. This is not what we want. I made a promise to Rosemarie that she would not be put in a home.

The PT was not optimistic about Rosemarie walking again and thought a final decision could be made in a week or two. My daughter and I protested that this was a bit soon to make a decision that was going to affect the rest of someone's life, and we asked what we could do to help. We stressed that we were committed to this happening. The PT agreed to schedule more sessions.

We established that if Rosemarie could walk then a care package for sixteen hours a day sitting service plus nurse input for medication may be available from Lambeth. The SW also said that the place at the Day Centre would remain open for the time being.

Me, my daughter, the SW, OT and PT came back to Rosemarie's bed to find her cheerful and smiling. They drew the curtains and she said something about 'her girlies' so the SW and I left them alone. They tried to get her to move to the edge of the bed and she began to get distressed. From outside we could hear her objecting and struggling and telling people loudly and clearly to go away. Things seemed to be getting very stressed so I went in and found her struggling with them. She looked at me fiercely and said "Go away!". I leaned towards her and held out my hands and said "Come here and say that!"

She grabbed my hands and pulled herself to her feet.

This seemed to shock her as much as us and we raced to get a chair for her to sit in. She would not sit in the chair but she stood several more times. This seemed to be more than the OT and PT were expecting and I was quietly pleased that Rosemarie had delivered at exactly the right time.

She rapidly became tearful - I think the effort drained her, but she compliantly drank a whole cup of tea afterwards. A lovely, serene nurse called Kadeon stopped by and urged us not to give up. She said she had seen miracles happen in the ward.

The Community Mental Health Team doctor came by and told us that there was some discussion about the dose of Sertraline Rosemarie should have. She thought it helped with the tearfulness and distress, and wanted to increase the dose, but the hospital doctor kept reducing it again.

A stressful day that had highpoints but against a soundtrack of Rosemarie's tears until the very end.

Shadows of Hope

Time passes differently in hospital. Individually the hours seem to crawl by because very little seems to happen, but the regular regime is hypnotically like the ticking of a clock and before you know it a week has gone by.

Sunday 23rd February. A week since the mad dash. All smiles on arrival. The constipation was apparently easing and with it the acute pain. Rosemarie seemed very happy until it came time to change her. Any physical intervention seems to distress her, and rolling her round on the bed has to be done just right, and with a low soundtrack of reassurance, or she will writhe and struggle and cry out.

A chance remark by one of the nurses the previous day had caused me to bring in a New York cheesecake for the staff to share. This was very popular but nearly started a civil war as a couple of the nurses good naturedly argued about who deserved it more. I tried to teach them about sharing.

The following day the PT and OT tried again to get Rosemarie to stand, but she goes stiff like a toddler when she doesn't want to do something and she got very distressed. The PT was not certain that she would ever get Rosemarie to do a safe transfer to a chair or commode, but said she would come back Wednesday to do another 'assessment'. I did some thinking about this and was not very happy. In my world you do some concerted work and then you do an assessment to see how you are doing. A couple of sessions and day and then an assessment at the end of the week maybe, but Rosemarie is only just off the morphine and very delirious still. This is not a proper attempt as far as I can see. Being able to walk with assistance at least as far as the toilet or bedroom seems the minimum requirement for coming home.

Tuesday was an eye opener. At home and in the first week in hospital we had settled on syringes as a way of getting Rosemarie to take fluids - particularly medicines - and thought we were being very clever. I arrived Tuesday early afternoon to find that all the syringes had been removed and a large notice from the Speech And Language Therapist (SALT - an acronym which initially caused some confusion) instructing all fluids to be given in cups. Not even straws were to be used. This seemed a strange instruction and I wasn't sure why a Speech Therapist was making this decision and asked to speak to her as soon as possible.

I was arrogantly and self-righteously ready to put them right and show them the error of their ways. I was on fire with indignation. A very dangerous place to be.

Kirstie arrived to talk to me and proved to be one of the most reasonable, intelligent, patient and interesting people I have met in a long time. I could have listened to her for hours. She gently pointed out that what we were doing was for our benefit not Rosemarie's. She was losing the swallowing reflex, and forgetting the link between sensations on the lips and the act of eating. Squirting liquids into her mouth - apart from increasing the risk of gagging and choking - was confirming to her that these things weren't important. Forget everything. Use a syringe or a straw. Become an invalid. Makes our work easier. She didn't say these things explicitly but I could join the dots. I felt humbled and ashamed of my arrogance. I half heartedly batted her some questions and she crisply batted them back. What about hot liquids and the risk of burning? Let them cool down. Spillages? Don't put so much in the cup. How can I stop her choking? Hold her hand against the cup. She will remember and let you know when she has had enough and wants the cup lowered.

It was a revelation. I tried it immediately and it worked. It was a mixture of fireworks and light bulbs going off in my head. The sensible advice kept on coming. Talk to her about the food we are feeding her. Try to get her to see it and smell it. Swallowing liquids is hard wired into us: babies do it automatically. Dealing with solids in the mouth is a different matter entirely. Remember the difficulties you had weaning your children? Imagine if you are forgetting that.

I remember Aleister Crowley used to say that you could always tell an expert because they could explain things in simple language.

Thank you Kirstie McKenzie.

Morphine, Sister.

The first week was just as much a blur as A and E really.

Another stream of names and faces - ward doctors, pharmacists, consultants, ward managers, the whirlwind of changing shifts and personnel.

With one exception everyone has been wonderful. The exception was a bitch who left Rosemarie in acute pain for two and a half hours for no apparent reason, other than laziness and the pettiness of people who think power is all about saying 'No'. My daughter was ready to wring her fat little neck and took a lot of talking out of it.  This woman's behaviour shocked all the nurses and students on the ward and they were queuing up to apologise to us.

The regular consultant is away for a week so there was a House meeting led by another consultant called Mr Jackson. The general feeling is that the major issue is the constipation which is actually made worse by the morphine, but whose pain can't be controlled without it. We were expecting them to prescribe an enema immediately but the consultant and the Ward Doctor seemed reluctant.

Rosemarie continues to be really distressed unless she is fully medicated. The staff are learning that she won't take tablets and were surprised and impressed by her ability to hide them under her tongue or in her cheek and furtively spit them out later. She will, though, readily take paracetamol in suspension.

We met the ward Physiotherapist and Occupational Therapist and I shared my concerns about Rosemarie coming home before there was proper care in place. They assured me that she would not be released until Lambeth had agreed to an appropriate care package.
We had a meeting with the Ward Doctor who said there was no sign of UTI or kidney problems.

The psychiatrist from the Community Mental Health Team stopped by. She is an absolute gem and was very supportive. She buttonholed the Ward Doctor and convinced her to increase the Sertraline dosage. I think this is a good thing. I am wary of the increasing number and frequency of powerful drugs she is taking but her needs are urgent and anything that helps the Delirium is ok by me.

Delirium. We had heard the word used in A & E but we were now given a small and explosive booklet about it. My daughter and I read it and it was like a thousand light bulbs going on. What I had been seeing over the past few weeks and had attributed to the rapid acceleration of the disease was listed here as a series of symptoms of delirium. Tick. Tick. Tick. Tick. I had never really thought about it before. 'Deliriously happy' and 'delirium tremens' were the only things that came to mind, but here was an illness with a lengthy onset and a cure that could take weeks or months. What kind of Rosemarie is left under the symptoms?

Finally on the Wednesday she was given an enema in the evening, and it had the desired effect early on Thursday morning. Rosemarie was still in pain and the routine of tears and morphine continued.
 
Friday someone had the bright idea of her having a CT scan. I went down with her. She does not like changing surroundings and became increasingly distressed on the way there. On arrival she was transferred to a different trolley and told she had to stay still while she was in the machine. I almost got her to lie still with her arms across her stomach, but since this was the area they wanted to investigate that wasn't much help. The technician asked if it she could strap Rosemarie's arms above her head. I told her not to try unless she wanted to lose some front teeth. The CT scan was abandoned.

This Professor Jackson had apparently found some really hard muscle in Rosemarie's lower back in the area she has long complained of as the source of pain and he was concerned it may be inflamed. She has been prescribed Naproxen which is only available in tablet form. We tried.

The PT and OT returned and tried to encourage Rosemarie to stand, using a standing aid. Getting her to a sitting position was difficult but just about possible. Getting her to stand presented a real challenge. I don't think it is the pain that stops her. I don't think she really understands what's happening. The crowd of people around her, the confined space created by the pulled curtains, the largely unintelligible instructions....no wonder she is distressed.
Saturday was another long day. They are trying to wean her off the morphine at last, and increasing the dose of paracetamol.

Maybe we have reached the end of the beginning.

A Cometary through Hell

For at least a couple of years Rosemarie has complained about pains in her lower right back. It started soon after the lumbar puncture she had as part of the diagnosis of Alzheimer's in 2011. Most of the time it was a low grade chronic pain occasionally treated with Nurofen or Paracetomol.

A few months ago it started to be more acute and we decided we had to do something about it. That is different from doing something about it. Back pain seems to be the woolliest and most unpopular complaint to go to a GP with. Random tests got us nowhere - there was no swelling on the site of the lumbar puncture and no particular sensitivity. The pain got worse and the medication more persistent. By January she was on permanent pain relief and we were moving from Nurofen to CoCodamol.

Midway through February I got an urgent phone call at work from the care worker who calls in to give her breakfast and lunch (a lovely warm and capable Spanish woman called Rosa) saying Rosemarie was in extreme pain and needed me.

I raced home and found her in agony, her body twisted and deformed by pain. I called out the emergency doctor who swiftly diagnosed urinary tract infection and prescribed and supplied antibiotics. He warned that there were varieties of infection and each required a specific antibiotic and he may have selected the wrong one. Such proved to be the case. A week later we were at the emergency clinic getting another prescription.

A week later the acute pain had subsided but the chronic pain was more intrusive and starting to take over her life. On the Friday we had a scheduled appointment with her regular GP and we were going to try again to sort this out.

Minutes before we left for the appointment Rosemarie had a serious fall. She has a tendency to try to sit down wherever she is even if there is no chair, and on this occasion she fell like a tree. I think she was in shock at the doctor's.

One of my major concerns was that she was starting to refuse to take the medication. She would clamp her teeth shut and refuse to admit the tablets. If we did manage to get them into her mouth she would push them into her cheek or under her tongue and then grimace and complain as they started to dissolve.

As a way round this the doctor prescribed a patch to supply pain relief continuously.

Rosemarie was in great pain getting into the car and the trip home was not easy.

I had to go to work in the afternoon but when I returned I found Rosemarie in great distress. She spent most of her time bent double grasping her knees and whimpering and asking me to stop the pain.

Friday night was a nightmare. Rosemarie could not sleep and consequently neither could I. She spent the whole night sitting up every fifteen seconds, moaning and then falling back. Nothing I could do helped.

Saturday continued in the same way. My powerlessness was torture. Rosemarie would shuffle around the flat, bent almost double and pleading to be relieved of the pain, for hours at a time. Finally, when she was completely exhausted, I could lead her to bed and she would pass out before her head touched the pillow. She would sleep for an hour or two then awaken, and the cycle would begin again.

By Saturday afternoon I was frantic and called the emergency doctor again. A doctor arrived, and examined Rosemarie. Her buttocks were a mass of bruises from the fall and a bruise on the left one looked and felt like a purple tennis ball. No wonder she did not want to sit down.

He said that obviously the pain relief was not working so we should double the dose. Then off he went. I added another patch.

Saturday night was no better and I was exhausted. Rosemarie was in Hell. Early Sunday afternoon I called the emergency doctor again and went through the history.  Dr Logan was a blast of sanity. She said she was sending a rapid response team. She phoned back an hour later and said they would be with me within the hour.

Forget museums and art galleries and the Royal Opera House. The NHS is about the best definition of civilisation I have come across.

Charlotte and Melissa from the Lambeth Rapid Response Reablement and Supported Discharge Team will always have a special place in my heart. They arrived when I was at my wits end and brought sanity, support and kindness to a situation that I felt was getting out of control. They were at the flat for about fifteen minutes before they announced that Rosemarie should be in hospital, and ordered the ambulance. The feeling of the crushing weight lifting off my shoulders was amazing, although it was soon replaced by the madness of A & E.

But before then I had the calm and loving support of Charlotte and Melissa quietly looking after Rosemarie while I gathered essentials and tried to think. They were technically off shift before the ambulance arrived but by chance they met the ambulance crew on their way out and briefed them.

Rosemarie was taken gently to the ambulance. We made our way to Kings College Hospital quite sedately, because Rosemarie was in much pain and could not settle on the stretcher.

We arrived at about 1830 and were booked in briskly. After a relatively short wait we were moved to Major Bay 11, and the vast, wonderful and chaotic process of A and E swung into action.

Thus began the Bruising of Rosemarie. In her state of agony she did not take kindly to intrusive examinations and blood tests, blood pressure readings and even simple temperature readings were traumatic events.

Rosemarie was heavily dosed with morphine for the pain and relapsed into a fitful sleep. I wish I could have. The early hours of Sunday morning crawled past in sluggish discomfort as I tried to alternately watch over Rosemarie and grab a few minutes of fitful sleep sitting on a bendy grey plastic chair. Monday morning stumbled into the eternal madness of A and E.

My daughter arrived somewhere in the middle of this and the relief was immense. I was no longer trying to cope alone.

There was a blur of doctors and consultants as we moved up the food chain from the duty A and E doctor to the Registrar ("If she's fighting so hard against the blood pressure reader why do you think the results will mean anything?") to the Consultant Dr Wang. He had two younger doctors in tow and as if we were in an episode of House we stood there as he reeled off a list of symptoms and possibilities. Dehydration and delirium. Extreme constipation. Urinary Tract Infection. Kidney stones. Kidney infection.

To handle dehydration he prescribed a drip, which meant inserting a cannula. I have always called Rosemarie a strong woman. Little did I know. It took two nurses, my daughter, me and the consultant to hold her down while he put the cannula in. She still has the bruises on her arm.  

They started to rehydrate her and she started a course of antibiotics.

I was seen by Paul and Cara from the King's Physio team and it was clear that their main purpose was to assess if Rosemarie could be discharged (?!) - whether there was an appropriate care plan in place etc. I was exhausted and desperate and dug my heels in.  To be fair they did not need much convincing and they evidently reported back that she should be admitted.

The Consultant said that he would try to get her admitted to a specialist ward for sufferers from dementia, but there might be a problem because it was really for the over 65s and Rosemarie was too young. Dr Clarke, who ran the ward, came to see me and we had a good talk. He said he would try to get her admitted today.

It was a long afternoon. Rosemarie was either comatose with the morphine or awake and sobbing in pain waiting for the next shot.

At last there was movement and we were eased from the barely controlled madness of A and E to the relative calm of Oliver Ward - not her final destination but the best that could be managed.

As night fell we left her sleeping and headed for home. The dark streets of Brixton seemed endless, drab and dreamlike. I felt the last 72 hours had changed something forever. I needed food and sleep. I do not remember going to bed.