Every Day Is Another Victory

I must be careful where and when I hope.

Yesterday I got there before 'lunch' (not even attempting to feed her at the moment) and was greeted by a Rosemarie transformed before my eyes. Eyes open, pulling faces, the occasional verbalisation and no apparent trouble breathing. She had apparently had some juice and a couple of spoons of porridge and a little of the Nutilis Stage Three. This was all great news.

She had not had Clonazepam for 24 hours (missed 2 doses) and it showed. She seemed active rather than restless and I kept telling her that her granddaughter was coming to see her at the weekend and she almost seemed to respond (I am careful where I hope. Apophenia lurks everywhere).

I sat holding her hand and chattering nonsense until Good Nurse arrived with the news that Rosemarie had not been passing urine and they were going to fit a catheter. She was going to show another care worker how it was done so she asked me to wait outside because otherwise she would be nervous. I think it is a bad strategy to fight everything on principle so I agreed.

It obviously did not go well because in the end it seemed to require all the female nurses in the Home trooping in one after the other helping/giving advice. In the end the deed was done and without unduly distressing Rosemarie, and she immediately passed 500 ml of urine into the bag, the colour of which made it clear she was still severely dehydrated. 

The Neurologist called in as promised shortly afterwards and sprinkled her usual support and common sense over everything, examining Rosemarie, checking and adjusting the settings on the drip, and interrogating the staff. She left, telling me she was on duty all weekend and I should call her if I was worried about anything. She isn't even directly involved any more.

I must be doing something right to deserve people like this.

Rosemarie started to get drowsy (she had not slept at all since she woke up in the morning) and happily took some juice (although she refused food) and was still relatively alert when my son arrived from work. He was profoundly relieved. We sat for an hour or so with her waiting for the District Nurses to replace the saline. This is always supposed to happen 'sometime after six' but that seems - and has been shown to be - a very elastic timetable for a group called the Rapid Response Team. I would have thought there was a clue in the name....

We left before shift change to head off to my daughter's house to discuss Rosemarie's funeral. We have been advised by several people. including a family member who owns a funeral business, that it is a good idea to give some thought to this matter before we have to, because if we wait till the decisions are forced on us we are going to risk making hasty decisions in an emotional whirlwind and rue it later. 

It wasn't as grisly as I thought it might be and I am very glad we did it. A few glasses of wine helped.

Back to the Care Home today about three in the afternoon to find her still relatively alert. She had a Clonazepam last night (they are reducing the dose slowly. She has stopped the morning dose and will stop the evening one in a week) and was slightly drowsy but nothing like she has been recently. Still not eating but taking a little fluid and, most importantly, taking her medication. 

Still ongoing problems with the supply of saline, straight out of a West End farce. The nurses arrived last night about 11 p.m. (which admittedly is 'after six') but seemed to think it was a Nursing Home rather than a Care Home and there would be nurses qualified to change the bag so they just left it in Reception, By the time the duty nurse realised this they were long gone. She phoned them and they said they would come back as soon as they could, which turned out to be 3 a.m.

It appears they then concluded that because Rosemarie was supposed to be having 1 litre every 24 hours and they were 12 hours late with the replacement, they should speed up the drip so she got 1 litre in 12 hours. So by the time I arrived it was all gone, and they were not coming back until.....'sometime after 6'.

I am not making this up.

I complained to the Good Nurse and the Care Manager (who is actually qualified to change the bag) and they found more saline from somewhere (I think it had been left by the District Nurses during an earlier episode of the farce) and Rosemarie was hooked up. They did not know what rate they should set so the Care Manager decided on a phenomenally cautious one drip every two minutes, and phoned the Rapid Response Team and told them to adjust it as required. I wasn't on the call so I have no idea if they will be bringing any more with them and what time they actually expect to arrive. They had not arrived by the time I left this evening and she told Good Nurse to adjust the rate to 10 drops a minute. This should safely last the night, but tomorrow is so another day...

I am still deeply worried about Rosemarie. She hasn't eaten anything substantial for over a week, but the plan was to fix one  thing at a time and so far it is working. She is taking the antibiotics (and the course has been extended) and she is being slowly rehydrated. She is intermittently taking fluid orally and is more alert.

A world away from how it seemed a couple of days ago, but that is still a world very close to the edge.

But I hope to sleep better tonight. I will risk  some hope on that.