Saturday, February 20, 2016

Looking Back

I have been avoiding a grisly sort of anniversary.

Two years ago today Rosemarie was lying in a ward in King's and the staff were trying to start weaning her off the morphine they had been giving her. I was settling into some sense of routine and I started making daily notes of what was happening. The handwriting is urgent and scrappy, and somehow seems to convey the shock and panic I remember feeling.

Reading my notes again and re-reading my early blog entries brings on wave after wave of sadness and upset. The problems I am dealing with now are so different from what Rosemarie was going through then. Things now seem weighty and complex; then they were raw and intense.

I only faintly recognise the person I was then. I was all about getting Rosemarie out of hospital and back home. It had not occurred to me that she would not be coming home. I was worried about her eating and drinking enough, her falling, and what seemed at the time a major problem communicating, but I did not have the faintest idea that everything would shortly be changing utterly.

It has been a long two years. Sometimes the repetitive days make me feel like I am on autopilot. Sometimes I feel exhausted, as if for two years everything has been on hold. And I have been holding it.

Two years of waking up alone each morning. She doesn't let me cuddle her (she can't control her body enough to let me) and rarely lets me kiss her, but I still love her more than I have ever loved anyone in my life. It is an especially cruel loss when you see what you have lost right in front of you. Every day.

But hers has been by far the darkest road.  Re-reading the blogs I am appalled by what this evil disease has done to her: the fear and panic in her eyes, the reality of losing everything that makes you a person. Bit by bit. One indignity after another, and the brutal crushing of hope. I think she is still able to make a little sense of the world around her from time to time, but not for long. She is emotionally raw and terribly vulnerable.

I remember when she was discharged I was told to think in months rather than years. She has confounded them, but at what cost! This brave, morally tall woman lying there fighting with everything she has to keep everything she has left for as long as possible. She may have lost nearly everything but I still see flashes and echoes of the courage and determination that define her for me. 

Today is just another day of course. Nothing really different happened today. I visited her, held her hand, kissed her forehead, chatted to her, fed her supper and tried to bring whatever comfort I could. 

But my mind has insisted on taking me on a dark and unwelcome journey.

That's all for now.


Friday, February 19, 2016

Food and Drink and Squeaky Wheels

I was royally told off by the hospital about Rosemarie's dehydration, and sorting this out became a major project after she came back to the Care Home. My daughter and I had a meeting with the Care Home Manager the Monday after she was discharged and made our concerns clear. We did not accept that her dehydration was entirely the result of her three days of 'refusing' food and drink prior to her admission. We are convinced that there is a long-standing problem getting her to drink enough. 

One of the things we asked for (and got) was for her food and liquid intake records to be transparently available in her room. This seems obvious to me. It makes more sense for whoever is giving her food and drink (and it is not the same person every time) to write it down after they have done it rather than have a random person make it up gather the information at the end of the day.

The raw data when I looked at it was revealing. Outside of meal times there was no obvious effort to hydrate her. The dietician reckoned she needed 1952 ml fluid a day. I went through the figures with her on the phone and we worked out that if she ate all her breakfast, pureed food and puddings this would account for some 800 ml of fluid leaving about 1200 to be supplied by thickened juice. That's about six beakers full of juice. Assuming one beaker with each meal that is still a further three during the day. If the SALT guidelines are followed that takes about 30 minutes minimum per beaker. 

That is assuming we can trust the figures. I try very hard but I find it hard to credit that she is having 150 ml of porridge, 200 ml of thickened juice and 150 ml of thickened tea for breakfast and all that is done in the half an hour to forty five minutes the notes say. 

I started recording the daily totals at the beginning of February and plotting them on a spreadsheet against the daily target. At the beginning the figures were abysmal. The average daily intake averaged 600 ml - 800 ml per day (even assuming we could trust the figures. 
I raised this with Good Nurse and showed her a couple of weeks of data and she promised to have a word with all the Carers and remind them that they had to both give the fluid and record it.

Later that day I had a call from her GP who wanted to talk to me about having her assessed by the Palliative Care Team. What? Apparently this was because Rosemarie was deteriorating and had started to refuse food and drink. What?? We had a brief but intense conversation: I pointed out the difference between refusing drink and not being given it, and how it was understandable not wanting to eat when you are ill. He said there was nothing to panic about and it was just an assessment. I reluctantly agreed on the condition that I would be present.

The next day I arrived at the Care Home to be greeted by Another Nurse with the statement "Rosemarie is going to be moving then."

The assessment had happened that morning and I had not been invited. Straight downstairs to confront the Care Home Manager, who was fortuitously with the Care Manager.

It seemed Another Nurse had jumped to conclusions. There was no decision or even result of the assessment, and if it was decided that Palliative Care was appropriate it would be provided by and within the Home. What this consisted of was left very vague. Apparently it would be whatever the assessment recommended.

This evolved naturally into another conversation about her fluid intake and we went over the same ground again with me hammering the points in even harder. And another thing. Rosemarie was supposed to be weighed weekly but she hadn't been weighed in a month. Why? I had been told that there was nobody free to do it. For a whole month. There were a lot of meaningful looks between the two of them and assertions that things had to be looked at. They seemed to think I was very upset and I have to say I played up to it a bit.

Squeaky wheel and oil thing.

Dramatic change in hydration levels. In the past few days we have seen daily intake rise to over 1000 ml consistently. And regular throughout the day. 

I am a tiny bit suspicious. Suddenly every hour during late morning and afternoon she is having 200 ml of juice. And not only that. Some of the blank spaces in the old sheets that featured in my early analysis seem to have filled in. Now it is possible that some of the staff weren't aware they should be filling in fluids given between meals and once they were aware of the fact they went back and corrected the data....

Sometimes I hate my cynicism. 

The truth will out though. If the next blood test shows falling levels of sodium then the squeaky wheel got the oil and we have a Result. If the sodium levels are still elevated someone will have a lot of explaining to do.

Saturday, February 13, 2016

More Fits

Rosemarie had two more fits today. I was there.

She was twisted in the bed when I arrived - one leg under the other and looking away from me. As is usual these days she did not register my presence or react in any way when I kissed her. 

I stroked her arm and talked about what I had done today. I made up some thickened apple juice (the dietician recommends nearly two litres of liquid a day so getting her properly and safely hydrated occupies a lot of time). I started to feed her spoonfuls of it but she kept turning away and took a lot of encouragement to take a mouthful.

Then suddenly she wasn't responding at all and I could see her shaking and hear laboured breathing. 

As I rushed round the bed my first thought was that she was aspirating but as soon as I could see her face I knew it was not that. She was blinking very rapidly, her pupils were dilated and her teeth were clenched together. She was going bright pink before my eyes. I stabbed the alarm.

It was probably less than a minute but it felt like a thousand years before a carer came rushing in and almost immediately rushed out to get Good Nurse, who was thankfully on duty. Rosemarie was put in the recovery position and connected up to the usual monitoring devices.

Her pulse was over 155 and her blood pressure was very high (I didn't notice the numbers till it started coming down) and her breathing was frighteningly laboured. She is not naturally a nose-breather but she had clenched teeth and a mouth full of saliva so there was no alternative. 

I would give ten years of my life to know what she is experiencing and is capable of understanding, but in any case it seems to me she must really be suffering. If she knows what is going on then her helplessness and inability to communicate must be torture; if she has only a limited understanding of what is going on then the whole thing must be very frightening. 

After about five minutes her levels began to come down and her breathing got easier as her jaw relaxed. They suctioned the saliva from her mouth and that helped even more. Everyone relaxed a bit. 

Good Nurse said she would probably sleep now and after watching her start to drift off left the room saying she would check back in half an hour. 

I sat tensely by the side of the bed. Every flicker, every gurgle, every jolt made my heart beat suddenly faster. I whispered useless words of comfort and encouragement. 

Then, after about five minutes there was a sudden change. The jaw clenched, the breathing became laboured, the legs spasmed and her eyes rolled up. Stab the alarm again. Wait forever. Good Nurse arrived.  

Shorter this time, maybe five minutes in all. Lying there suffering, lonely and distressed.

Again the pulse and BP came down slowly and the breathing became easier. Then deeper sleep came.

Good Nurse left again, and I resumed my vigil, my eyes glued to her dear face and my breast sharing every breath of hers. Once again I felt crushed by my helplessness.

A carer came to change Rosemarie and I helped. She hardly woke at all, and when we had finished she seemed to collapse into a very deep sleep. Her usual faint snoring sounded like music to me, and the paleness of her skin was beautiful.

I sat there looking at her as time shuffled past. After a while it became clear that she was deeply asleep and I could safely leave her and go and find the nurse. 

So this is the third episode of fits and the third time they seem to have come in pairs. I must raise this with the neurologist. I am still haunted by the worry that this happens more often than we know and she doesn't patiently wait until someone is around before having a fit. The staff are supposed to check every resident each hour but this is not the Army and I doubt if you could set your watch by them. It possible that she could be checked and found awake and calm, then have a fit, sort of recover, have another fit, sort of recover, fall asleep exhausted and be found apparently sleeping at the next check.

Almost too horrible to contemplate. But I must.

The list grows. 




Wednesday, February 03, 2016

So What Did We Learn?

People hear different things
Anyone listening to Rosemarie could hear the gurgling in her chest. The locum doctor could hear 'bubbling' through his stethoscope. The paramedic could hear 'crackling' through hers. Nobody at the hospital (including me) could hear anything. Either it mysteriously cleared up just as we got to A&E (cold air maybe?) or something else is going on. 

Doctors aren't very good at communicating

The doctor called the ambulance and wrote a referral letter but very little detailed information seemed to get through to A&E Reception. They were very interested in what I had to say but I felt that I was having to provide all the information rather than providing background and detail. 

Once an idea takes hold it is hard to get rid of
I never referred to Rosemarie's lack of movement down her left side. I didn't mention it as part of the reason for admission. I didn't mention it at all. Somehow someone observed it and thought it was part of the problem. Plans were made to investigate it without checking with me. Even in the late afternoon there was a suggestion that her discharge may be dependent on the results of the scan. In the end she moved too much for the image to be clear but the general analysis was loss of brain volume consistent with Alzheimer's.

Hospital food is still terrible
It is a mystery to me how anybody gets better in hospital if they eat the food. Unless their body forces them to get better so they don't have to.

Change causes deterioration
We were warned about this. Change inevitably results in a noticeable alteration in responses and abilities. We saw it after the X-ray and to a much greater extent after this hospital visit. She has shut something down. She hardly reacts to stimuli at all and for extended periods she just lies there, not looking around, not making any noise. 

Tuesday, February 02, 2016

Hospital 2

The last time Rosemarie was in hospital the ward was quite casual about visiting hours, but when we had left the previous evening I could not avoid seeing a large unfriendly sign stating that visiting hours were STRICTLY between 2 and 8.

I phoned at 11.30 and was told (predictably) that Rosemarie had 'had a good night' and we had a brief discussion about what she liked to eat. The nurse asked about Rosemarie not being able to use her left arm. 

It had never actually occurred to me to mention this to them. Rosemarie was left handed and co-ordination went first on that side. Years ago, before hospitalisation, I used to notice how her cardigan would slip off her left shoulder. In the Care Home, when she was sitting in a wheelchair, her left arm would fall to the side and would be a dead weight for us to lift back onto her lap. She can grip with the fingers of her left hand but she shows no interest in moving the arm.

One of those things that is so part of life that you don't see it any more.

I asked how early we could visit and the nurse reluctantly agreed that we could come 'a little early' but seemed very unenthusiastic. She said the doctor's round was at 3.

We arrived at the hospital just after 1.15 and started negotiating the maze of corridors. There always seems something metaphorical about walking down long, mostly empty, straight or occasionally inexplicably twisting corridors of a large, sprawling hospital like King's. Looking into the distance to see your destination crawling imperceptibly closer, resisting the urge to walk faster and faster, and obsessively reading the colour coded, terse signs.

Maybe just me then.

The translucent ward doors were locked when we arrived. I pressed the buzzer and at the third attempt a voice asked what I wanted. I said I had come to see Rosemarie and the voice said visiting wasn't till two. I said I had phoned earlier and been told it would be ok. The voice snapped off with a crackle but nothing else happened.

Another couple arrived and asked if the doors were locked. I said they were but the woman went through the pantomime of trying them anyway. After a while they pressed the bell with the assumption that they were different people and might get a different result. A crackle from the speaker but nothing else. I tried the door. It opened.

Rosemarie was slumped in the bed and did not appear to recognise us or show any awareness of our presence. On the bedside table was a congealed pureed meal mostly uneaten, a half eaten yoghurt and an unopened pot of unthickened apple juice. 

The Staff Nurse bustled past and said that Rosemarie was scheduled for a CT scan (they still seemed to be fixated on her inability to lift her left arm. However many times I told them otherwise, it had become embedded somewhere that this was a recent change and part of the reason for her admission). 

An hour later a porter arrived and took Rosemarie for her CT scan. We went too, even though we were told we would not be allowed in. On the way back we were told that she had been co-operative and not moved at all. 

The doctor came round at 3.45 and said that they were concerned at the lack of movement on the left side of her body and she was scheduled for a CT scan but it had been cancelled (!).

The X-ray of her chest was completely clear. Her blood showed some signs of bacterial infection (possibly UTI) so they would prescribe antibiotics. She was pretty much fully rehydrated and her oxygen level was OK. They expected to discharge her late afternoon once they had checked she was eating properly and was 'back to normal' (we had mentioned she did not eat her breakfast, had hardly any lunch and did not appear to have drunk anything).

You could hear the machine grinding into action. Nothing short of a seizure was going to stop discharge. 

We spent the rest of the afternoon listening guiltily to the conversation between the patients and the visitors in the beds around us. It is very easy to get sucked into their stories.

Rosemarie slumped in the bed, looking sad and tired, totally unresponsive. Time passed.

At 5.25 the Staff Nurse came by and removed her cannula. She said that the doctor had written the discharge letter and they were just waiting for the medication from the Pharmacy. So no worries about not eating and drinking then.

Just after 6 her food arrived. When I say 'food' I mean  a plate of congealed puree that smelled like compost and tasted revolting. I have no idea what it was meant to be but I had no intention of trying to get Rosemarie to eat it.  

Minutes later the Staff Nurse arrived with a bag of medication and the discharge letter, and she was followed by the transport guys. The said they were happy to wait for Rosemarie to finish her meal. I told them it would not be necessary. 

It was cold and heavy outside and the journey back to the Care Home seemed slow and exhausting. Rosemarie seemed tired and listless and I felt the same. It was good to be out of the hospital and it was great that Rosemarie was rehydrated but I was left with a nagging feeling that it had all somehow been pointless.

The Care Home seemed smaller and very quiet when we arrived. Rosemarie was swiftly put to bed and seemed relieved. We tried to give her some Forticreme (she had barely eaten anything in four days) but her eyes were drooping and her chin falling to her chest. 

We left her in her warm, dimmed room, breathing shallowly and looking like she really didn't want to be anywhere.






Hospital 1

Last Tuesday Rosemarie started to show signs of another infection: listlessness, temperature, lots of phlegm in her throat, and reluctance to eat. By Thursday Good Nurse and I were starting to get worried: three days without food and, more worryingly, almost no fluid intake.

This thickened liquid idea was not really working. The recommended consistency is similar to that of thick custard or thick yoghurt. It is almost impossible to drink; you have to sort of 'bite' some from the tilted beaker. I had some success feeding her with a spoon, but allowing for the wait to check she has finished swallowing, it can take over an hour of patient work to get her to drink 200 ml. And that is if she cooperates. If the thickener is added to water the resulting liquid looks and tastes like wallpaper paste. I always try to mix cranberry or orange juice - something with a bit of taste - but I am certain a lot of the care staff just mix up water. It is no surprise to me she doesn't want to drink.

The doctor had been called Wednesday but didn't turn up. Called again Thursday and didn't turn up. By Thursday night Rosemarie was seriously dehydrated and Good Nurse strongly advised - and I reluctantly agreed - that she needed to be in hospital. She promised to chase up the doctor Friday morning and insist on a visit even if it was from a locum.

I didn't get a lot of sleep Thursday night. There have been too many examples of residents with chest infections going off to hospital and not coming back. Despite my recent positive experience with the X-ray I lay in the dark with worry chewing at my gut. It was almost a relief when the alarm went off. 

I spoke to Good Nurse at about 10 and she told me she had spoken to Rosemarie's doctor and he would visit her at 1230. He was of the opinion she should be in hospital but wanted to see her for himself. Later she rang back to say he wouldn't be there but was ordering the ambulance for 1230.

I threw some things in a bag and jumped in the car. At 1200, as I arrived at the Care Home, Good Nurse rang again to tell me a locum doctor had turned up and had ordered the ambulance. It arrived 10 minutes later, and after half an hour of fiddling with paperwork and one of the paramedics examining Rosemarie, we were off to A&E at King's (my strongly requested choice)

Rosemarie didn't doze this time but was quiet and remote: since the chest infections there have been many more of these eerily calm times, and I can't help but feel that another part of her is disappearing. The eyes stare blankly, she does not respond to me calling her name, stroking her arm or any other attempt at stimulus. I sat next to her in the ambulance and tried to speak soothing and reassuring words but she totally ignored me as if I was on another planet.

She was like this during the journey, the booking in, the multiple blood pressure readings, the EEG, and unbelievably, the insertion of a cannula. In its own way it felt more distressing than if she had been agitated and frightened. 

I started the process of telling her story repeatedly that I remember clearly from last time. A succession of nurses and doctors coming in, asking questions, making notes (in the case of nurses usually on their hands). Most carried stethoscopes and listened intently to Rosemarie's chest and none of them could hear the noises heard by the locum doctor or the paramedic. They set up a saline drip and plugged her into some oxygen and passed in and out of the cubicle in the usual slightly frantic, barely controlled chaos of A&E.

Just before 5 a porter arrived and took her for an X-ray. I went with her but was not allowed in this time so I had to kick my heels in the corridor for 10 minutes till the porter reappeared with her and we returned to the cubicle. 

I find the nurses either to be chatty and pleasant or sullen and resentful. I had been fortunate enough to click with a couple of the former, one of whom brought me a cup of tea (my first of the day) just after we got back from X-ray, and also kept me vaguely up to date during the long empty hours of waiting.

The plan appeared to be to get Rosemarie into a ward, settled, so they could continue to do tests. Almost immediately she returned to tell me that the plan had changed and they wanted to do a CT scan because they were worried about her lack of speech...

I wasn't sure whether the nurse had misunderstood the plan (unlikely) or the hospital had misunderstood Rosemarie's situation. I enlightened the nurse and she disappeared into the crowd with a worried look on her face. 

Just after 7 a doctor arrived and pronounced that the CT scan had been postponed and that the priority was to get Rosemarie rehydrated and reduce her sodium levels. She would definitely stay overnight and possibly till monday depending on the results of the tests.

We had quite a lengthy conversation about Rosemarie's condition and particularly about the trade off between preventing aspiration by using the thickener and risking dehydration by.... using thickener. It was clear there was no answer to this problem but these honest talks are in some strange way empowering. 

It was now about 7.30 and Rosemarie had been lying on the hard cubicle trolley for six hours and she was beginning to twist slowly and move her legs restlessly. I tried to comfort and reassure her but she ignored me.

Just as the plan had been sorted out and we were looking forward to getting her to a more comfortable bed, everything slowed down for the shift change.

Just after 8 the doctor returned with a consultant and basically said the same things all over again, but more briskly this time. 

Time slowed to a crawl. 

Rosemarie's friend Celia arrived. It was nice to have someone to talk to at last. 

The nice nurse was replaced by a sullen woman who resisted all my attempts to form some kind of relationship. She took Rosemarie's blood pressure. I asked what it was (as I had done throughout the day). Her answer was to rudely enquire if I had any idea what the numbers would mean, and what it should be, the clear implication being that I would be too stupid to understand if she told me. When I told her what it had been throughout the day, what an acceptable range was and at what level it was considered dangerous, she harrumphed and refused to speak to me. Later, Rosemarie's drip ran out and the alarm began to sound. I told the nurse when she was walking past the cubicle. She sighed heavily and wordlessly flicked the alarm off. She didn't replace the drip for half an hour. 

Finally, at 10.30, nine hours after admission,  a porter arrived with the paperwork to move her to a ward. Long brisk walk through empty echoing corridors then into the dim hushed ward full of the noises of people trying to get to sleep. 

Rosemarie looked exhausted, very vulnerable and somehow very small in the hospital bed. It was nearly 11 by the time she was settled, and we were briskly hustled out of the ward.

Long empty corridors again, waiting for a bus in the dark rain, and the unexpected bustle of Brixton at nearly midnight on a Friday, the damp pavements full of excited people looking for parties, small groups of teenagers all talking at once, and pairs of heavily made up girls wandering around who must have been almost fifteen.