Future Echoes

Rosemarie's emotional roller coaster continues but there is a new aspect which brings a chill to my heart.

Over the past week or so, when she has been changed and put to bed in the early evening, she will mostly continue to chat, cry, be angry or agitated and writhe and wriggle on the bed. But occasionally, and increasingly, she will relax into an almost zen-like calm, lying there gazing into space, at one of the pictures, or maybe at the TV (showing one of her ballet DVDs). If I stroke her hand she does not respond. If I talk to her she may react as if in a dream.

Something tells me this is not an improvement.

It is like a large, heavy, cold weight in my stomach. I have got used to coping (just) with her agitated interactions, but at least there was the attempt, even if I can't understand more than a tiny fraction of what she says. I notice I have been clinging to that. I knew there would be a next stage - nobody would pretend to know what it would be or be honest enough to tell me (the mantra is, "Every case is different") but I am having an icy premonition that I will see  more of this and sooner rather than later.

I really don't want that. I really, really don't.

I feel horribly unprepared for it. It will herald a new kind of loneliness and sense of loss. I think it can be distressing to sit with her at the moment, when she is urgently trying to communicate something or sobbing or angry, but the thought of sitting with her for hours when she doesn't respond to anything.... I don't know how I will deal with that.

I don't feel very strong at the moment.

Escape Committee

Rosemarie's communication is usually unintelligible but not entirely opaque.

On a number of occasions recently her distressed monologues have changed into intense,  intimate,  conspiratorial murmurings. The general gist seems to be that if we stand up and move quickly we can get out.

The urgency and the trust are truly heart-breaking.

I am not sure where this came from. I think possibly my repeated assertions that, when she can transfer from wheelchair to car and back with minimal assistance from one person, I can take her out places, has combined with her sense of forced residency (or as she sees it, imprisonment) to conjure up images of escape.

This very difficult to deal with. Usually I manage to deflect it towards discussion of walking or making attempts to stand up and do a few steps. This sometimes diverts her but some times she says "No...Quick...Now...". That clearly.

Her awareness of her location and her distress at being there are increasingly evident now and this is becoming a real problem. Her anger is mainly directed at me but can be extended to other members of the family and in some cases visiting friends.

But not the staff. They are the prison guards and must not suspect anything.

The Exhaustion of Listening

It is almost impossible to understand Rosemarie now, unless she is very angry or just communicating a single, simple word like 'Yes' or 'No'. She repeats the same syllable constantly during the 'sentence' and it never seems to have anything to do with a recognisable word. There is a small amount of cadence but that doesn't really help.

It is distressing for both of us, and there are often tears of frustration on both sides. 

Either she is communicating something she thinks is funny or interesting - often interspersed with smiles or laughter - or she is upset or angry and trying to get this across.

In both cases she is usually expecting some response, and that is deadly ground. In the past, particularly when she was suffering from delirium, she seemed less interested in responses, and we could get away with 'Mmmm', 'Yes I know' or 'Absolutely'.

Not any more.

So what do I say? I can, of course, ask her to repeat the sentence, I can try to guess and ask a leading question, or I can make a noncommittal noise. None of these are safe options - maybe a 25% success rate.

It is obviously so clear in her head, and the intensity of the communication demands some response. I find myself straining to catch the slightest hint of what she is talking about.

I have found I can't stop. I can't turn off.

It seems I am hard wired to try to understand the communication when someone is speaking directly to me. If it is background noise of a foreign language film without subtitles I can block it out, but when it is a personal communication it has an almost unbearable priority, and in Rosemarie's case the consequences of getting it wrong intensify the pressure.

It is exhausting.

I used to stay with Rosemarie for three or four hours a day with no problem, but now I feel drained after a couple of hours. Some days she is chatty and good humoured and laughing a lot and that makes me feel worse. I desperately want to understand her, to join in, to connect, but I have no Universal Translator.

The universe is unthinkingly cruel.

Round Table

We had the three month review. I think it went OK. I don't think there is any problem with the funding of continuing care, but we are still waiting to hear the decision on additional one to one care.

I had done as much advance preparation as I could.

Because Rosemarie had moved from one borough to another, responsibility was transferred to a new Community Mental Health Team. I met the new Psychiatric Nurse a few weeks ago when she took over, and she proved to be an enthusiastic, committed young woman who clearly had Rosemarie's interests at heart. We got on really well, and she insisted on coming to the review (I was about to ask her anyway). She managed to get the date changed to one she could make, and arranged to meet Rosemarie beforehand. She sat there reading all the notes and the care plan and announced at the end that it was clear Rosemarie needed more one to one care and she would push very hard for it.

I had a meeting with the Care Home Manager and the Care Manager to discuss how they were approaching it. They had a fine line to tread: they could not appear too well able to cope or they would not have demonstrated the need for another person, but at the same time they could not state that they are leaving Rosemarie at risk. They had to say (and show) that they are just about coping but it puts a great strain on the staff and adversely affects the general level of care they can give to other residents.

Rosemarie's recent enthusiasm for standing up, and the fact that she has had a few falls (not serious) when staff could not reach her in time is a timely justification.

I spoke with the representative of the CCG on the phone a few days beforehand and she seemed very pleasant and professional. I asked her what the appeals procedure was if we were dissatisfied with the decision. She said she didn't know and didn't think anybody had ever appealed. I let this hang for a few seconds and asked her if she could find out.

The meeting consisted of the representative from the CCG plus a trainee, the psychiatrist from the Community Mental Health Team, the Care Home Manager, the Care Manager, the duty nurse, my daughter and myself. We took over one of the lounges, and clustered like bees around a small round table.

The first part of the meeting consisted of reviewing the criteria listed in the Decision Support Tool Dr Evans had filled out all that time ago. Nothing had got better, some things had got worse: this was all pretty straightforward.

Then we came to the discussion about the one to one care and it was a bit like pushing at an open door. Everybody made their case clearly and the CCG representative noted it all down. I pointed out that for the last three months I had been effectively a part time care worker because I was there for several hours every day and that freed up a member of staff for other duties. I would be going back to work soon and that would put additional strain on the existing staff.

It appears that 24 hour one to one care is only funded in cases where there is the real threat of violence, and this obviously does not yet apply to Rosemarie. One to one care comes in 6, 12 or 24 hour blocks so the only option on offer was 12 hours. I made the point that the alternatives were providing the 12 hour one to one care or consigning her to her bed for an additional 6 hours a day - which was unacceptable for several reasons.

The CCG representative seemed to be swayed by the arguments but said the decision was not hers, but that she would put the recommendation forward. The meeting ended on a pleasantly positive note.

Of course it couldn't be that easy.

A couple of days later the Care Centre received an email saying the CCG needed evidence of the requirement. Why this wasn't brought up at the meeting I couldn't imagine. I checked that the Care Home were clear what 'evidence' the CCG was looking for and what form it would take. I was assured that everything was under control and the necessary documentation would be provided in the next couple of days.

I so much wanted to take charge of this but with a heroic effort of will I kept my mouth shut.

We are still waiting.

Miscellany

Sometimes I can't believe how my life has changed over the past 12 months.

The redundancy was a blessing in disguise, and my length of service meant I had extensive 'gardening leave' and I have only recently started eating into the Redundancy payment and my savings. I am going to have to get a job soon, though, and that will mean spending less time with Rosemarie.

As I said in the previous post, that may not be a bad thing - for her, but in any case it will mean my life will change significantly again. I don't want to fall into the trap of exhausting myself trying to be everywhere at once.

Closely watching the operation of the NHS, the local council, and now the Care Home over the last few months has been an education. I have met some wonderful people and seen some inspiring things, but my overwhelming impression is that most things are broken.

Not necessarily in a big way. Often it is the little things that don't work. And it is not that people don't want things to work (usually), it's just they are not that committed to making them work.

A case in point. At the Care Centre they bring the meals round on heated food trolleys to the lounge and then dispense it either to residents in their rooms or residents seated at the tables or in chairs in the lounge. Most residents have some level of difficulty about feeding themselves and spillages are not uncommon. Rosemarie will often get messy round her mouth and I need to clean her. Where are the napkins? Oh, there aren't any. Well sometimes there are - a great thick packet of them in a drawer in one of the cupboards in the lounge - but the next day the packet is gone. There is no way that number of napkins gets used up, so what happens? Well, when there are no napkins in the lounge and I ask for some I am often just told there aren't any and I should use the bib to wipe Rosemarie's mouth. Sometimes a member of staff will go to the nearest toilet and get some paper towels, and sometimes they will disappear and return with a packet of napkins. These are often suspiciously already open, which suggests they have been stolen from somewhere else.

So why don't they sort something out? This is not difficult. Whoever replenishes the paper towel holders could check and replenish the napkins. Or the person who puts the plates on the trolley in the kitchen could add a pile of napkins. Everyone is used to there being a problem but people spend as much energy living with it as they would spend fixing it. Although it affects everyone it is someone else's problem.

My son works in the construction industry, and he tells me they have a saying, mainly aimed at Health and Safety issues, which goes "If you see it, you fix it."

I like it.

Observations and record keeping. This is important in any medical or care situation, but how much attention - how much commitment - is given to it?

They keep records of the residents' sleeping patterns. This consists of a chart with boxes labelled 1900, 2000, 2100, 2200, 2300, 0000 etc. On or near the hour someone checks on each resident and records their status as either Awake, Asleep, Awake and Distressed, or (bizarrely) Needed Changing. This is the record that is consulted when I ask whether Rosemarie had a good night.

It is almost meaningless.

For a start, at best it records snapshots. If it reads S S S S S throughout the night - fair enough, we can infer that the resident slept through the night. But an hour is a long time - Rosemarie could wake up, become distressed, cry herself to exhaustion and fall asleep before the next visit. And how do you interpret S A S? That could mean five minutes awake or nearly two hours. Conversely A A A A A suggests the resident got no sleep at all. But maybe they were asleep but woke up when the door was opened. It is like going through the motions of collecting data without any likelihood that it will be useful.

In one of my meetings with the Care Manager we discussed this and I asked about the Awake and Distressed status. What counts as distressed? Writhing about on the bed and shouting would obviously count, but what about Rosemarie lying quietly with tears running down her cheeks? I got no answer. There did not appear to be any guidelines about how to fill in this form. Everyone has their own interpretation, so when I ask whether Rosemarie had a good night or not I have no real way of evaluating the answer I get. 

I was particularly concerned because Rosemarie's pattern seems to be that she is awake until about midnight or 1 a.m., and then sleeps fitfully for maybe five hours. She is often so tired in the morning that she is given her breakfast in bed and left to sleep till lunchtime. If she gets up early she sometimes falls asleep in the chair in the lounge. If she is asleep or sleepy she will miss Physiotherapy, any stimulating activities in the morning, and possibly a meal. She often seems tired and grouchy in the evening when I arrive and maybe that doesn't help our interactions.

What is interesting is that she is given a sleeping tablet at 2100. And she is often still awake after midnight. Nobody seems to find this strange. It seems to me there are three options: either she is not taking the tablet (hiding it under her tongue and spitting it out later), or the dosage is too low, or she is so distressed that the medication cannot work.

I am trying to get the GP looking after her at the Care Home to talk to the Psychiatric Nurse responsible for her psychotropic medication and sort something out. I know she is on the lowest possible dose, and they are worried about leaving her over-tranquilised during the day but there is a problem at the moment and nobody is doing anything about it. Increase the dose and see what happens. It can always be decreased again.

I don't want to become Victor Meldrew but I find I am getting more and more irritated by this stuff. Most of us are able to cope because we recognise the problem and negotiate a way round it. Rosemarie and other people in a similar position don't have that option.

Nor am I complaining specifically about the Care Home. They are not bad people. This sort of thing is happening all over the place.

I just notice it more now and feel it more keenly.

Standing Ovation

I meant to update more often, really. 

I'll try to bring it up to date in a few separate posts.

One of the frustrating things about not being there the whole time is that it is difficult to get accurate information about what Rosemarie has been doing and how she has been coping. The shift system means that by the time I get there in the afternoon the staff who were with her during the night have long gone, and the notes are.... we will come back to that. Even talking to the staff on duty doesn't necessarily mean I can find the one who gave her lunch or changed her.

But most of the staff are very good at seeking me out and telling me what their experience has been, and although it is sometimes inconsistent it does help to give a picture of how she is doing when I am not there.

This is important because I am now fairly certain that I can actually be a disruptive influence and I need to take responsibility for that. I clearly remind her of home, remind her that she is not at home, and I think she sees me as the person who could make things right and isn't doing it. Although she often greets my arrival with outstretched arms and a gasp of relief, this often deteriorates very quickly into tears and anger. If she is more stable and calm when I am not around then it suggests I should visit less often - and that thought makes me uncomfortable. Or maybe when I am not there she is more likely to bury her upset deep inside and only let it out when I arrive. I try to find out whether the staff have noticed her distressed or crying during the day but I sometimes think they tell me what they think I want to hear.

But sometimes it is good news.

After about a month we started to get reports of Rosemarie standing up on her own. Not walking, but just standing up and bracing her legs against the chair. This was fantastic news,  but she wouldn't do it for us. We had been in this situation at the hospital (see previous posts) and although we wanted to believe we really needed to see it with our own eyes.

Then she stood up when our friend Phil was with her so we knew it was real, and then at last she did it while I was there. When she was standing her face had an intense look that was  a mixture of exhilaration and defiance. With all of the symptoms of the illness I had forgotten how determined (stubborn? bloody-minded?) Rosemarie could be. She began to stand more and more often.

Everyone viewed this as an achievement and usually the staff - and sometimes some of the other residents - would cheer and applaud her. She would sit down with a broad smile on her face and her eyes shining.

This development made life more difficult for the staff because standing means risk of falling so the one to one care she is receiving has to be exactly that. During the hours when one to one care was not funded the staff could previously have someone in the vicinity and keeping an eye on  a few residents at the same time. Not any more: if there was nobody sitting next to Rosemarie she could stand up, lose her balance, and fall before someone could get to her.

Some of the staff were as excited about this as I was, and one in particular was very keen to get her to walk. We began to get reports of her walking a couple of steps with someone supporting her with an arm round the waist....then a few more steps.

Then my daughter was visiting when Rosemarie was having one of her infrequent physiotherapy sessions (The physiotherapist has a huge workload and if Rosemarie is tired or uncooperative the session is abandoned) and saw her walking. A few days later I arrived just as Rosemarie and a carer were walking across the lounge. I struggled to get my phone out to film it.

The staff continue to encourage her to walk. She has to be in the right mood to do it and she seems to find it physically and emotionally draining. Her leg muscles had wasted significantly while she was in hospital and they are only now beginning to fill out again.

It is not much, but it is like a flower blooming in an arid landscape.