Lunch (mine!)

On Wednesday, a matron came for a chat with me about J's rather difficult journey through surgery and the aftermath, and my experience of supporting her in hospital. I explained that although policy was clearly to welcome involvement by family carers, and staff would have found it almost impossible to communicate anything to J or understand her at all had I not been there, there was no real support from the hospital with the practicalities of someone in my position staying for an extended period. There was nowhere I could get a hot meal - had P not undertaken the five hour round trip every three days or so and brought supplies from home, I would have been living on M&S salad pots and Costa sandwiches for three weeks (which becomes expensive as well as limited); nowhere I could have a shower or even wash other than the tiny public toilet on the landing (though the staff nurse in CCU had kindly allowed me use their staff shower and told me I could go back there even after J returned to the wards); I had been sleeping on chairs most of the time; and infection control measures meant I was not allowed to enter the kitchen to keep anything in a fridge or fetch hot water for a drink, and, since the kitchen was only staffed at meal times, had to bother a nurse for every cup of tea. This was difficult, as they were always far too busy and it felt unreasonable to ask them to run around for me. When I last supported J in hospital in 2019 she was still at school and therefore in a paediatric ward, where there was a tiny parents' room with kettle, microwave, fridge and a supply of tea, coffee and milk. It made a big difference. I tried to explain without moaning, to communicate my appreciation of the positive and welcoming attitude of most staff, but to make clear that a little attention to practicalities would make it much easier for family carers to support disabled patients and the staff working with them. 

Later the same day, the very helpful kitchen assistant who had been trying to chase up J's puréed vegetarian meals came to tell me I could now order hospital meals; so here is my very welcome plate of Greek salad, lots of fresh and feta cheese. It was good; and later I also ate a hot dinner. Before we left, I was told my experience and comments had been discussed with a senior manager in charge of patient experience. I have no idea whether any changes, even minor, will result from it, but I enjoyed the salad.

Meanwhile, things were falling into place for J's return home - doctors, physio, pharmacy, SLT, rehab team... until an unexpected late night drop in oxygen saturation meant J needed increasing levels of oxygen for some time and another chest x-ray. She had a bad night - neither of us slept much - and we were bitterly disappointed that hope of a weekend discharge had now evaporated. Nothing sinister was found, things settled down, but there had been several such incidents over the past couple of weeks and no-one had an explanation.