It has been a week or so of miscommunication, or rather, missed communication. Two different but parallel issues that pretty much sum up the frustrations of being dependent on other people doing their jobs so that you can do two of the absolute basics of life - go to the lavatory and go to sleep.
Three times a week, Tuesdays, Thursdays and Fridays, two district nurses come in the afternoon to help me go to the loo. You may imagine this involves hoists and slings, catheters and so on; in reality it involves pulling my legs forward until I'm at the edge of the wheelchair seat and passing a bottle. Not difficult but necessary. Knowing that the nurses are coming means that Polly is free to go to work or shopping or running on those days and doesn't feel she needs to dash back mid-afternoon (not that you can just dash back from a shift at Great Ormond Street Hospital or the Marsden or a Hospice). In my extensive experience the nurses who come are always (well nearly always) friendly and helpful and professional. Obviously we cancel the calls when we are on holiday..
As mentioned in the last post we went to the New Forest for a week. When we returned we expected normal service to be resumed but on the first Tuesday back no one came. Never mind we thought, they've simply forgotten we were only going for one week. Polly rang them and left a message on their answering machine. Sorted.
On Thursday no one came. Fortunately Polly came home reasonably early. She rang again. This time she spoke to a human being. What, she asked, was the point of leaving a message on their answering machine if they weren't going to act on it. Apologies were made. Sorted.
Friday came, which was more than could be said for the district nurses. More phone calls, more apologies. Obviously there had been some sort of misunderstanding. Next week would be a fresh start. Definitely sorted.
The weekend passed in a mood of gloom as the boys realised that they would be going back to school shortly and that homework, of which for the whole of the summer they had denied all knowledge, needed to actually be done (or at least plausibly lost). On Monday Polly took them to the Spectrum Centre in Guildford for a final holiday treat of flumes and artificially generated waves. Summer was officially over.
On Tuesday the district nurses didn't arrive. I was annoyed. Polly was ballistic. When Polly is mad she puts aside her genuinely non-confrontational, friendly and accommodating persona and adopts her more fearsome Mrs Deal alter-ego. When she finally found a human being of appropriate seniority to talk to on the phone I could hear extracts of her side of the conversation all the way from the kitchen. Questions were asked - how could they miss FIVE calls when they had been contacted immediately after each missed visit? How can we plan day-to-day if we can't rely on them to do their job? Yes, they were welcome to take over the morning get-up call if they found finding fifteen minutes three afternoons a week too much. Did they realise that would involved up to two hours seven days a week instead. Did they remember they were supposed to be my care managers and that the three weekly calls were supposed to keep them abreast of my changing condition? Did they understand what a person in a wheelchair did when they didn't know when they'd next be able to go to the loo? They would restrict their fluid intake. Restricted fluid intake for people in wheelchairs inevitably leads to urinary tract infections. Is that what they wanted? Would they be happy to take on the additional nursing that would entail?
When the phone call end with a curt "Good, we'll expect to see someone on Thursday. Thank you for your help. Goodbye" Matty looked up from the computer he'd been sheltering behind, looked at me and said, "Wow Dad, she certainly went all Mrs Deal on their ass." I couldn't disagree.
On Thursday two district nurses arrived blissfully unaware that anything had gone wrong. They were friendly, helpful and professional as usual. It's not the nurses who are the problem it's the management structure and its inability to communicate when something unexpected occurs. You leave messages with machines or people and they seem to vanish into the ether. Too harsh? What do you think might happen when vital equipment breaks down?
Next time - A Matter of Mattresses.
Thank you for reading. Please comment and share.
