The Manacles of Helplessness

It is 8.20 a.m. and Rosemarie is lying in bed sleeping or unconscious depending on your viewpoint. The frantic professional bustle is over and the nurses have left, leaving behind a selection of equipment that might needed again and a carer who is sitting the other side of the bed looking slightly awkward: I am not being a sparkling conversationalist.

It is less than fifteen minutes since Rosemarie's second fit of the day and I seem to be an emotional wreck. I am keeping notes out of habit, but mostly I am fighting down panic. Is this going to happen every couple of hours now? Is this a step change in her condition that heralds a whole new regime of care? How long can she last having fits every couple of hours?

Rosemarie's eyes are closed but nothing else suggests even vaguely normal sleep. Her teeth are clamped together and, unusually for her, she is breathing through her nose. The result is laboured bubbly snorts, interspersed with grunts. Her limbs are not twitching.

This continues for some twenty five minutes and then she becomes very agitated. She is rubbing her face and nose with the back of her hands and sometimes her fingers, and she is twisting her body from side to side.  She is blowing her cheeks and making straining noises. The carer looks at me and I look at her. I try to soothe and comfort Rosemarie but she does not respond in anyway and behaves as if I am not there. After a few minutes she calms down and resumes her nose breathing but does not close her eyes.  The Good Nurse calls in to check on her and tells me the Doctor has phoned and someone from the surgery will come but not before lunchtime. 

Ten minutes later the agitation starts again and follows the same pattern, except this time when she turns her head to one side she opens her mouth slightly and releases a teaspoonful of foaming spittle. 

This pattern continues as the hands on my watch crawl past ten o'clock. Every jerk of her limbs could be the beginning of another fit. 

I try to keep my mind busy. I phone the Community Mental Health Team nurse to let her know what has happened in case this is relevant to the medication review. As it happens she is meeting the CMHT Doctor in the afternoon to do the review. She tells me she will call me afterwards or in the morning. I phone my daughter and text my son to keep them updated, but a can't answer any of their important unasked questions: What is going to happen? Will she be alright? When will it happen again?

The carer tries to give her some water but Rosemarie's flailing limbs catch it and the water goes all over the sheets. Two carers come in to change the sheets, give her a wash and change her pad. I normally leave the room and let them get on with it (out of courtesy not squeamishness) but this time I am not leaving and I am not even asked to. She finds the activity more than usually distressing but however hard I try I cannot soothe or reassure her. She seems slightly calmer after they have finished. 

The previous day there had been the 12 month review of her eligibility for CCG funding (I was going to write a blog about it before this happened) and one of the things that came up was her inability to communicate her needs. Since she seems to have an almost continuous UTI the decision was made to confirm the start of continuous antibiotic provision (although there were major doubts raised about the antibiotic selected) and also start regular doses of paracetamol to combat what was likely almost continuous pain, and see whether this had an effect on her chronic standing up and regular agitation.  

Good Nurse comes in with soluble paracetamol dissolved in some water and impressively manages to administer it to a very unco-operative Rosemarie. There is a lot of Cross Communication from her, but whether because of the painkiller or for some other reason after about 20 minutes she calms down and actually dozes off into an apparently normal sleep.

Twenty minutes later she starts coughing in an alarming way and raising her arms high above her. I start to get alarmed but she stops coughing, lowers her arms and dozes off again. A new care worker arrives and the other one goes off for a break.

There follows an hour when Rosemarie is moving almost continuously, impervious to any kind of comfort. More foaming spittle and more strange noises. She takes occasional sips of water.

Then Good Nurse comes in with some Fortisip and it is like a magic potion. Rosemarie drinks the strawberry flavoured liquid down in almost one continuous suck through the straw and within a couple of minutes has calmed down dramatically. There is the return of mild jolting in her body for the first time since the previous evening. 

It doesn't last. Within an hour she is back to the twisting, jerking movements and the severe agitation. For the next hour and a half she is mostly like this, with occasional brief dozes. Even when dozing she moves in an agitated way. About 2.15 p.m. she wakes from a doze with a very loud hiccup-like noise that jolts her entire body. This frightens me.

I cannot remember the last time I was able to comfort her.

Shortly afterwards the Doctors arrive. Yes, two. I hear them outside the open door talking to the Good Nurse about Rosemarie's condition and medical history (it becomes apparent neither of them have met her before) and in due course they come in, at the same time as some food for Rosemarie organised by the Good Nurse.  I text my son and my daughter to let them know the Doctors have arrived and my daughter replies that she is half an hour away.

I don't know why there are two doctors and I don't think to ask. One gives Rosemarie a full examination which she does not like but does not actively resist. They both ask me questions about her medical history. They tell me that fits can be caused by infection, medication, or brain degeneration. They say that there is no trace of infection in her lungs or digestive organs (the UTI is not severe enough to cause fits) and brain degeneration is not measurable. The Donepezil - even at half dose - is a suspect and they suggest discontinuing it. I will try anything. They do not seem worried by the foaming spittle, and they do not think Rosemarie has had  a stroke. I feel slightly gullible when I notice myself relaxing, but there is no second opinion available and it is what I want to hear. 

I ask what the plan is if she has another fit. Does she go to hospital? They think not, unless she doesn't recover as she has this  time. This makes sense at the time but when I think about it later it doesn't really mean anything. She didn't 'recover' from the first fit: she had another one...but she did 'recover' from the first fit because she didn't have another one for two hours.

Rosemarie is getting agitated with so many people in the room and so much conversation and the party gradually withdraws, just as a carer arrives to give her the food.

This seems to help. It could be me relaxing or the fact that Rosemarie has not eaten anything solid for nearly 22 hours but it seems to me she calms down and becomes more the Rosemarie I have got used to. She still will not let me comfort her but she seems to be happy to eat so I leave her with the carer and head downstairs to meet my daughter and talk with her without having to do it in front of Rosemarie.

I call the lift but when it arrives my daughter is in it so we take it downstairs and I update her while we sit in the slightly uncomfy chairs in Reception. I then text my son an update.

I feel that my day is at last moving into Sanity. It is an enormous support to have my daughter there and suddenly the morning phone call seems an age ago. When we go upstairs and enter Rosemarie's room she seems different, obediently eating macaroni cheese and not waving her arms around. She looks exhausted though, and when the carer tries to feed her yoghurt (usually a sure thing) she is not interested and it smears across her mouth. Her eyes close and her head nods. Within a few minutes she is asleep. A proper sleep with no strange breathing or alarming noises.

There is a sea change in the atmosphere and as I relax I feel waves of exhaustion wash over me. Intellectually I know that she could have another fit anytime - this is how she was this morning when I arrived, after all - but the fact that she has gone nearly eight hours without a fit and has managed food and drink brings hope, somehow. 

My daughter and I sit watching her sleep. After a while she wakes apparently normally. She does not recognise us but she is not overly distressed. My son arrives and she seems to recognise him. 

The day winds down as the staff organise supper for the other residents and I have to decide what to do. I could stay here in case she has another fit but by that logic I would never leave at all. And what did I actually achieve by being here? True, I pressed the alarm and the staff came running when otherwise they not have discovered her until later. But what did they actually do? They were ready to clear her airways if necessary but it wasn't. Other than that everyone just waited for the situation to resolve itself one way or another. 

This starts off a dark train of thought. How many times may she have had a fit during the night and nobody was there? It would not necessarily set off the motion sensors - she would pretty much have to get out of bed to do that - and she could have fallen asleep by the time of the next hourly check. But that way madness lies.

If she is having regular fits then statistically some of them will be during the day when people are around her, or if they are during the night there is a chance that they will be observed or the aftermath noted. I slowly think myself calmer.

What I cannot get over is how I was totally unable to comfort or reassure her. The blast doors came crashing down and left us each in our own separate nightmares.

In the end I decide to go home. We call the care worker to sit with her and try to ensure they check on her more regularly through the night (there are not enough staff on duty for one to sit with her the whole night). 

As I drive home I hear phones ringing in my head.