Rain

A tough ten days.

On the plus side: no more fits (we think) and Rosemarie is a lot more communicative and smiles and laughs a lot more. 

On the minus side: frequent exaggerated arm and leg movements, leaning far over to her left or forward, going stiff as a board and threatening to tip over the wheelchair. Getting hot and distressed and pulling her hair and clothes.

Each day is different - I never know what I am going to find.

The annual Strawberry Fair was held at the Care Home last Sunday; last year Rosemarie loved it: this year not so much. Maybe it was the alternating bright sunshine and cloudy wind, the general noise level or the UTI she is still suffering from, but she didn't really enjoy it at all and most of the pictures I took show a frightened and distressed Rosemarie. 

The Care Home staff are worried that she will hurt herself or someone else and so are starting to put her to bed if they think she is upset or jolting too much. While I don't object to this as a strategy to calm her down I don't want her to become bedridden. I suspect a lot of the time she is unhappy in the lounge and most of the time she benefits from being taken somewhere different and quieter. That can include her room but I don't want it to become the standard option. The other day she was got up at 10 but put back to bed at 11.30 and was still there when I arrived at 4.00 pm. She was quite calm and appeared happy but I think that is a reason to get her up again not leave her there. I had a word with Good Nurse and I think the message will get through.

I took a few days off to take Celia back to Derbyshire and spend a couple of days unwinding: it didn't really work. I know I get tired and stressed but I can't seem to relax even when I know friends and family are covering. Derbyshire is beautiful and peaceful and Celia is a lovely hostess but somehow it seems like cheating - Rosemarie can't take a few days off.

Tonight she was ok when I arrived and I took her downstairs to the lower ground floor lounge and sat with her and looked out at the garden while feeding her pieces of pineapple. She was chatting and occasionally laughing. And jolting.

The rain was falling heavily in giant wet drops that splashed noisily off the concrete of the terrace. The plants swayed and bent in the downpour and rivulets of water chased each other down the window. The sky was dark grey and heavy.

It seemed to mean something.

Reboot

Strange things happening.

I went to the Care Home on Friday not sure what to expect, but found Rosemarie sitting in the lounge apparently cheerful and quite alert. The staff said she had been fine and not distressed at all. I took her to the garden and she seemed more interactive than for a long time - smiling and even laughing occasionally.

Saturday was more alarming. She often adopted a pose I have often seen with mentally disabled people - raised forearm and bent wrist, and she frequently lurched to one side. She was also difficult to feed because she kept tilting her head back when she opened her mouth (that makes it dangerous giving her food - she could easily choke). She was however a lot more communicative than the previous day. She became increasingly cross at my attempts to feed her and suddenly exploded in anger "NO. STOP. GO AWAY." Clear as anything. 
Sunday was much the same.

Monday my daughter came and Rosemarie was on sparkling form - laughing and pulling faces and generally being a fountain of fun. Although she was not communicating sentences there were recognisable words in her speech and a much greater sense of awareness in her eyes and posture. 

Several times she went rigid and we were worried, but she showed no signs of having a fit.

She was cheerful and laughing today as well, and more cooperative about eating. 

I don't mean to exaggerate what is happening: Rosemarie is still disoriented and confused, easily distressed by loud sounds and too many people, but when she is relaxed, and taken somewhere quiet, we are seeing behaviour we have not seen for months. The sense of distance seems to be gone; the unresponsive glazed focus on the infinite horizon has melted. All the staff are commenting on it.

It comes, of course, with anger. Today I had several near misses where bared teeth presaged a lunge with a clawed hand and a suitable growl of anger.

It is very tempting to read too much into this: the fits rebooted the brain and we have gone back to a metaphorical System Restore Point. I have not read anything to suggest this can happen and I think I know enough about both to be fairly certain that parallels like this between brain and computer are fanciful.

And yet....

For now I am just enjoying what we have. Long may it last.

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.

Back To The Nightmare

It is 6.15 a.m. and the house phone is ringing. Hardly anyone except cold callers rings the house phone and my sleepy brain doesn't register the ring tone until it cuts out and the answering machine kicks in. I listen drowsily as the announcement plays faintly through the bedroom door then the sharp tone of an ended call. I relax. Wrong number.

Thirty seconds later my mobile rings. I feel adrenaline flooding my system. There is only one likely caller. In my haste to grab the phone I knock it to the floor and by the time I have picked it up it has gone to voicemail. I try to focus my bleary eyes on the last number on the call log. I don't recognise it but it is the right area code for the Care Home. I press callback.

As the ringing starts I find myself desperately hoping this is a dream, but the cold dead weight in my stomach convinces me otherwise.

A voice answers. It is the Care Home. I give my name. "I have a missed call from you."

"I'll transfer you."

Ten long seconds of the most banal music on hold.

The duty nurse on Rosemarie's floor answers. Brief, professional communication: Two carers were changing Rosemarie at 6 a.m. and she had an epileptic fit. The on call doctor has been contacted and will call back within half an hour.

I feel myself climbing onto the rollercoaster. 

I try to formulate the important questions. The answers come back brisk and convincing.

How long did the fit last? Three to five minutes (!)
Is she OK? She is alright now.
What does that mean? She is asleep now.

I am groggily trying to do some maths here.

It happened at 6? Just before.
Did they wake her up or was she awake? Don't know. (Why did I ask that?)
Did she hurt herself...bite her tongue? No.

My mind is spinning. 

"Call me as soon as the doctor calls you back and tell me what he says."
"OK"

My ceiling is hypnotically interesting. I get up and go to the bathroom for a quick wash and shave. My heart is pounding and I feel sick. 

As I am getting dressed I hear my son getting up for work. I knock on his door and we talk for a few minutes about what has happened. I tell him I don't think he needs to take the day off and I will keep him updated. If he needs to come to the Care Home he can get there quite quickly.

I get in the car and head off to the Care Home, calling my daughter on the hands free and letting her know what is happening. She says she will be along mid afternoon or earlier if needed.

Either the traffic is eerily thin or I am driving aggressively, but I am there by 7.15.

There is nobody at the Nurse's Station on Rosemarie's floor and I have to go in search of staff. I find the two carers on duty and check what I have been told then ask them to tell the nurse I have arrived and head off to Rosemarie's room. One of the Walkers is slumped asleep in a chair near her door.

She is sleeping. I try to remember the last time I saw her sleeping and can't. She doesn't look particularly peaceful but her breathing is regular. I have just sat down when there is a knock on the door: it is the New Nurse. I like her: she likes Rosemarie.

We go outside to talk. The fit lasted less than a minute. The carers saw her turn dark pink and pressed the emergency button to summon the nurse. Rosemarie was put in the lateral position to recover. She did not seem particularly distressed and fell asleep almost immediately. Hmmm.

I go back in the room and sit down. Rosemarie is still sleeping. I get out my phone and start going through emails. At about 7.45 Rosemarie starts some severe jolting, which slowly settles down.

Just after 8 the handover happens and Good Nurse comes in. I am relieved - New Nurse is good but Good Nurse is diamond. We talk for a few minutes and she goes away.

Rosemarie starts to move again and I think she is waking up. For a minute she moves her arms and legs in a jerky fashion with her eyes closed, then her eyes spring open and she starts making strange sounds: a cross between a moan and whooping cough. Her eyes grow wide and frightened and she begins to jerk violently. My heart thumps in my chest and I stab the emergency call button with one hand while trying to cuddle a Rosemarie that now seems to consist of flailing limbs and wild staring eyes. 

The beeping seems to go on for an age before the door opens and one of the daytime shift carers comes in. She assesses the situation in a heartbeat and presses the call button again. The beeping becomes a rapid staccato and within what seems like seconds there is the Good Nurse, the New Nurse, the Male Nurse and another carer in the room. A bustle of efficient activity that I see through tunnel vision as I am gently eased aside.  

I have seen people have fits before but it was different this time. There was something terrible about being inches away from a face I love so much that is contorted beyond recognition and voicing an eerie soundtrack. 

They have checked her airway and taken her blood pressure and temperature and fixed a small device to her finger. She is already falling asleep (going unconscious?), with her teeth clenched and making bubbly sounds as she tries to breathe through her nose. 

I have a strong sense of Here We Go Again.

The assembled nurses queue up to reassure me that Rosemarie is in no immediate danger but caution me that if she has another fit they will have to call an ambulance. When they have said the same thing enough times for me to get it they leave - all reassuring smiles - and a carer comes in to sit next to Rosemarie.

I think this is going to be a long day.

This is all I can write tonight. I need food and sleep.

Noise

There is a constant turnover of residents on Rosemarie's floor at the Care Home: a resident dies and their room becomes available. It is either filled by someone totally new or someone moved from a different floor (two of the floors are dedicated to dementia but the other two are Palliative Care and Learning Difficulties). Recently the new arrivals have contributed significantly to the noise level.

This is a problem for Rosemarie. Loud noises startle her and continuous loud noise disorients and distresses her. Her jolting increases significantly and there are often tears. She is clearly not happy.

We now have the Shouting Greek Lady I have mentioned before, The Shouting Greek Man, a new Shouting Lady with Bad Legs, and a Shouting Lady Who Doesn't Know Where She Is. Any combination of these can be in the lounge and if they kick off they will start off the others, plus a couple of usually quite quiet residents who seem to be distressed by the noise. Add the noise from the television and the clatter and chatter of meal times and you have quite a cacophony. 

When I am there, especially for her meals (and when any of her friends are there) the general rule is to take her out of the loud situation as soon as possible and park her somewhere quiet. If it is a meal time this means moving to the other lounge or out to the Nurse's Station. Other times it means a quiet place on another floor or out in the garden.

Yesterday at supper the noise in the lounge was bubbling under and her friend Celia and I took her to the other, quieter lounge.

We just had her settled when a sweet Romanian carer brought in a new arrival, Shouting Man Who Doesn't Know Anything. Presumably he was too loud for the other lounge or it was full.

Carer: Sit here and have your supper.
SMWDKA: WHAT DO YOU MEAN SIT DOWN? WHAT DO YOU MEAN?
Carer: Sit down on this chair.
SMWDKA: WHAT CHAIR? I DON'T KNOW WHAT YOU WANT. GO AWAY.

Carer manages to get him to sit in his chair (he seems to have some problems with his vision) and puts his supper in front of him, saying 'Eat your supper'

'I DON'T WANT ANY SUPPER. TAKE IT AWAY. HOW AM I SUPPOSED TO EAT IT?'

'I will help you'

'WHAT DO YOU MEAN? I DON'T WANT ANYTHING. TAKE IT AWAY. I WANT A POO.'

No immediate response from the carer, obviously getting frustrated.

'DON'T YOU UNDERSTAND? I NEED A TOM TIT'

I am sure cockney rhyming slang is very big in Romania.

Eventually she took him out of the lounge leaving his uneaten supper, and the noise disappeared down the corridor. 

After all this Rosemarie was trembling and distressed. Luckily for us the man did not return, because the Sex Pest was lurking by the Nurse's Station and we couldn't really take her to another floor. 

I still have to get the carers to see Rosemarie as emotionally vulnerable and that it is part of caring for her to shield her from stressful situations like this. 

I spoke with the Good Nurse afterwards and she sympathised. 

It is always going to be uphill, I fear.