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.