Communication

The loss of communication is one of the most tragic things about Rosemarie's condition, and the frustration of not knowing for certain what is going on with her is agonizing. 

She doesn't try to communicate much. A lot of the time she is totally unresponsive and doesn't seem to recognise me, but every now and then there is a glimmer of communication. I think halving the Donepezil and effectively discontinuing the sleeping tablet has had a positive effect, but not much.

As part of my attempts to record her emotional state in detail I have started categorising the tone of her communication and ignoring the content. Sometimes she will say complete words distinctly - usually "Yes" or "Go away", but most of the time it is the stammering repetition of a single syllable or consonant, which gives no clue at all as to meaning. But the tone or cadence of the communication suggests meaning or at least motivation, and I have tried to set up a way of describing what I take to be the intent of her communication.

I realise how dangerous this is. It is easy to project meaning onto the sounds - animal noises or natural sounds can appear to contain inflection - but it is all I have to work with. I try to use neutral phrases in the example but the inevitable result is I hear a phrase relating to her condition.

There is the type of communication I call Urgent. This has the qualities present when someone says a sentence like "The pipe has burst and there is water all over the floor!" (but I hear "They are hurting me and I can't stop them!"

A similar type, much quieter, is Conspiratorial - "Keep your voice down - they may be listening" ("Nobody is watching - quick, let's go now!")

Intense or Angry - "This is the third time today this has happened!" - ("You have done nothing to help me and just talk platitudes!")

Confused and Frightened - "What is happening? - I don't understand any of this." ("Where am I? Why are you doing this to me?")

Sad (usually accompanied by tears) - "I have lost everything" - ("I'm all alone and there is nobody to help me.")

And rare and precious...

Loving = "I love you"

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And another couple I noticed tonight, (sadly a lot less common these days):

Chatty - "I saw Sue the other day and she told me she has got a new job" - (could be anything)

Humorous - "And he slipped over and poured milk all over himself - it was so funny" - (could be anything)

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This is work in progress and I can see that I will need to refine this. It is a start though, and allows me to record what is at least my interpretation of her mental and emotional state at particular points in the day.

It is so very far from communication, though.

Things Fall Apart.....

Well, not quite. But the Review was quite frustrating. 

I have spoken of the Good Nurse before. She is intelligent and enthusiastic (she regularly requests night shifts so she can catch up with her paperwork) and she is committed to Rosemarie. The Psychiatric Nurse from the Community Mental Health Team likes dealing with her and actually rescheduled the planned Review Meeting so it coincided with a day she was working so she could attend.

She was transferred to a different floor at the last moment so could not attend the meeting. 

Now the nurse who was on duty is not a bad person, but she has only been working at the Care Home for three months and only worked on Rosemarie's floor for a handful of days. There was no way she could know Rosemarie well enough to input to the meeting and she had no time to prepare for the meeting so none of the required notes were easily available. 

The main purpose of the meeting was to review the medication and the care plan based on the data recorded by the one-to-one carers about her emotional and mental state. This meant reviewing the effect of the changes in her medication on upset and agitation and sleep pattern. Guess what.

The quality of the data left a lot to be desired. The carer notes (which may or may not be what is sent to the CCG - I hope not) often consisted of nothing more than "Sitting in Lounge" or "Taken to room and changed"

So no information from the Home about her emotional state. Sleep chart? Not in the file. The nurse had to go and look for it. Interesting point here. The sleep chart ends at 0800. I am told when I ask that Rosemarie is often sleepy in the mornings - woken up for breakfast but then left to sleep till 1030 or 1100. This cannot be recorded on the sleep chart, so is it recorded in the carer notes?

Take a wild guess.

The notes are not done during the day as events unfold. They are completed at the end of the day by a designated carer who may or may not have been with Rosemarie for any significant period during the day. They try their best and as far as I can tell do it studiously but this is a recipe for bad data. I noticed it when I reviewed the information used by the nutritionist to make a decision on Rosemarie's dietary needs. The chart showed that in the previous week she had eaten all of her supper every day. This came as a surprise to me since I had given her supper each day that week and knew for a fact that she hadn't eaten all of it. Nor had anybody asked me what she had eaten. 

So I started to record relevant data about my time with Rosemarie on my own form each day and the Good Nurse was keen to include this in Rosemarie's notes. This has now become the pattern. The Psychiatric Nurse commented in the meeting that these were the only notes that were useful in making a decision. She took copies away.

It seemed clear to me that there was no point in asking the Duty Nurse to do anything, even though she was attentive and scribbled things down. There is no reliable way of feeding change into the system with any certainty it will be applied. 

The Care Home has a Manager who can set policies and make decisions, but is far to busy to monitor the results except in the short term where there is a strong impetus (concerned relatives). This focus of attention will naturally fade with each successive meeting with different concerned relatives.

The next management layer down is the Care Manager, who is basically fighting fires and unless there is a major problem with Rosemarie is unlikely to have more than a passing contact every so often. Even if notes were comprehensive neither of these individuals would have the time to check up on every resident. I was told about six months ago that there was a plan to have regular reviews of the care plan with relatives at least every three months. Still waiting.

The next layer down is the Duty Nurse. I am not privy to shift handover meetings but the evidence I have suggests only really significant information is communicated or absorbed. The Duty Nurse has the power to effect change because they are responsible (it seems) for the management of the Care Workers, but whether this power is used or not seems to depend on the attitude and confidence of the nurse on duty. Good Nurse is quite happy to tell Care Workers what to do; others less so. In the absence of strong management the Care Workers become a self governing democracy influenced by the strongest personality. I have seen this quite a lot - the Duty Nurse is a resource for escalating problems or delegating decisions (can you delegate a decision upwards?) Having what is in effect a Supervising Care Worker may be a practical solution but it increases the complexity of the information flow. Care Workers and Duty Nurses work shifts, have breaks, and have days off. 

Case in point. Rosemarie has one-to-one care. That means that there should be someone with her at all times looking after her interests and taking her out of stressful situations. On a busy day, even with the optimal staff complement, there is a tendency for the Care Workers to behave as if it is OK if only one of them is in the lounge keeping an eye on the residents, even though that one should be dedicated to Rosemarie. You can see where this is going. One-to-one care gets diluted. Even if there are two workers in the room, who managerially decides to take Rosemarie out of a stressful situation? What are the chances that any two randomly selected Care Workers will know what the policy is and how to apply it?

To give Duty Nurse credit, she took this on board. The next day when I came in she was on duty and told me that Rosemarie had been tearful during the afternoon and one of the Care Workers had been told to take her somewhere quiet and sit with her. I found her in the garden. 

So. Tiny victories and oiling the machine one component at a time. 

The Psychiatric Nurse will be phoning the Care Home Manager. I will let that happen then request a meeting. 

I must stress that these are not bad people and this Care Home has an excellent reputation and is by far the best one we visited.

I am not complaining about the Care Home.

I am complaining about the world.

The Hope That Springs Eternal

There is a Medication and Care Plan Review on Thursday. I will be there with my son and the psychiatric worker from the Community Mental Health Team, and hopefully the doctor from the same team. And my favourite nurse from the Care Home, who fights hard for Rosemarie and has earned my undying gratitude.

I am not sure what result I want. The adjustment to the medication seems to have had confusing results. Without the sleeping tablets and with the reduction in the dosage of Donepezil she seems to be sleeping longer and getting tired earlier. Initially the crying and upset was reduced but that seems back to its previous levels. Ditto the standing up. 

I have no idea (and haven't had for some time) what the actual expected progress of the disease is. Nobody will tell me. "Every case is different" is all I hear. Or people who show no sign of knowing what they are talking about.

So. Since the Good Nurse came back from holiday Rosemarie has put on nearly two kilos and is being tested regularly for UTI (which she seems to have most of the time). There is more supervision of the care workers and - it seems - more regular changing. 

The warmer weather means we can go down to the garden more. She shows interest in her environment and will point at the flowers and touch them if I wheel her close enough. She notices the pigeons and seems happier to interact with other people. 

And yet. 

There are issues with some of the other residents that have to be taken into account. Some of them can get very noisy and if several of them are in the lounge at the same time they seem to set each other off. Most of the time this startles and disturbs Rosemarie and I am still trying to coach all her possible one-to-one carers that they need to do something about this: reassure her or, if that doesn't work, remove her from the situation. 

Then there is the Sex Pest, a creepy nonagenarian who decided a long time ago that Rosemarie was A Lovely Woman and he would lavish unwelcome attention on her. I caught him once groping her and made it clear to all the staff that I did not want him near her. Unfortunately Rosemarie gives him mixed signals and more than once I have had to resort to shouting at him. The staff are very good about keeping him away from her but this requires constant vigilance. He has even come wandering into her room a few times after she has been put to bed, clutching his pajama bottoms round his fat belly. When I am there I shout at him and heroically refrain from hurting him. When I am not there I set the motion sensors and the door alarm before I leave (and the staff seem pretty good at setting them too) but Rosemarie's room is quite a long way from the Nurse's Station and I have yet to complete a test seeing how long it takes them to arrive after the alarm is triggered. There are only two staff on each floor at night and one nurse covering two floors, so they could easily be busy with another resident if the alarm goes off... it makes my skin crawl. 

So quite a lot to cover in the meeting. 

But it is just stuff to handle. I seem to have found again a guttering flame of hope.

I love her so much.