Food and Drink and Squeaky Wheels

I was royally told off by the hospital about Rosemarie's dehydration, and sorting this out became a major project after she came back to the Care Home. My daughter and I had a meeting with the Care Home Manager the Monday after she was discharged and made our concerns clear. We did not accept that her dehydration was entirely the result of her three days of 'refusing' food and drink prior to her admission. We are convinced that there is a long-standing problem getting her to drink enough. 

One of the things we asked for (and got) was for her food and liquid intake records to be transparently available in her room. This seems obvious to me. It makes more sense for whoever is giving her food and drink (and it is not the same person every time) to write it down after they have done it rather than have a random person make it up gather the information at the end of the day.

The raw data when I looked at it was revealing. Outside of meal times there was no obvious effort to hydrate her. The dietician reckoned she needed 1952 ml fluid a day. I went through the figures with her on the phone and we worked out that if she ate all her breakfast, pureed food and puddings this would account for some 800 ml of fluid leaving about 1200 to be supplied by thickened juice. That's about six beakers full of juice. Assuming one beaker with each meal that is still a further three during the day. If the SALT guidelines are followed that takes about 30 minutes minimum per beaker. 

That is assuming we can trust the figures. I try very hard but I find it hard to credit that she is having 150 ml of porridge, 200 ml of thickened juice and 150 ml of thickened tea for breakfast and all that is done in the half an hour to forty five minutes the notes say. 

I started recording the daily totals at the beginning of February and plotting them on a spreadsheet against the daily target. At the beginning the figures were abysmal. The average daily intake averaged 600 ml - 800 ml per day (even assuming we could trust the figures. 

I raised this with Good Nurse and showed her a couple of weeks of data and she promised to have a word with all the Carers and remind them that they had to both give the fluid and record it.

Later that day I had a call from her GP who wanted to talk to me about having her assessed by the Palliative Care Team. What? Apparently this was because Rosemarie was deteriorating and had started to refuse food and drink. What?? We had a brief but intense conversation: I pointed out the difference between refusing drink and not being given it, and how it was understandable not wanting to eat when you are ill. He said there was nothing to panic about and it was just an assessment. I reluctantly agreed on the condition that I would be present.

The next day I arrived at the Care Home to be greeted by Another Nurse with the statement "Rosemarie is going to be moving then."

The assessment had happened that morning and I had not been invited. Straight downstairs to confront the Care Home Manager, who was fortuitously with the Care Manager.

It seemed Another Nurse had jumped to conclusions. There was no decision or even result of the assessment, and if it was decided that Palliative Care was appropriate it would be provided by and within the Home. What this consisted of was left very vague. Apparently it would be whatever the assessment recommended.

This evolved naturally into another conversation about her fluid intake and we went over the same ground again with me hammering the points in even harder. And another thing. Rosemarie was supposed to be weighed weekly but she hadn't been weighed in a month. Why? I had been told that there was nobody free to do it. For a whole month. There were a lot of meaningful looks between the two of them and assertions that things had to be looked at. They seemed to think I was very upset and I have to say I played up to it a bit.

Squeaky wheel and oil thing.

Dramatic change in hydration levels. In the past few days we have seen daily intake rise to over 1000 ml consistently. And regular throughout the day. 

I am a tiny bit suspicious. Suddenly every hour during late morning and afternoon she is having 200 ml of juice. And not only that. Some of the blank spaces in the old sheets that featured in my early analysis seem to have filled in. Now it is possible that some of the staff weren't aware they should be filling in fluids given between meals and once they were aware of the fact they went back and corrected the data....

Sometimes I hate my cynicism. 

The truth will out though. If the next blood test shows falling levels of sodium then the squeaky wheel got the oil and we have a Result. If the sodium levels are still elevated someone will have a lot of explaining to do.