Yesterday I was up and dressed around 7:00am (which for me is the middle of the night) because I can never be sure when the carers will turn up. Most of the rest of the day was spent dealing with medical visitors of one sort or another, or on errands to do with patient care, or being on the phone to various medical people. The nature of the discussions gradually escalated through the day, culminating in a decision to take my mother into hospital that evening. I finally got home at around midnight.

The good news is that Mum will be far better cared for in hospital than she will be at home. There’s no way, even with the three carer visits and one nurse visit a day we were getting, that we can provide the same level of care that 24-hour nurse support can give. When you are very ill, the slightest thing can knock you down, and you need help to get back up again.

On the downside, my days from now on are going to revolve around visiting a hospital in another town. The train station locations are not convenient at either end, and while there is a bus I travel very badly on such things and will happily walk miles to and from train stations to avoid using them. The best solution is to hire a car, and the weekly hire rates don’t seem too bad. Longer term I need to buy one, and with Kevin’s help I’ve just extracted a large portion of my savings from the USA and can start looking for something second hand. I have an awful feeling I’ll need to get used to driving a manual again.

As yet I have no idea what this is going to do to my available time. It is likely that the hospital will want Mum home again as soon as possible, but how many days that means I do not know.

There’s a lot that I could be writing about what I’m going through right now. Mostly, however, I’m choosing to remain silent. Partly that’s out of consideration for other family members, but to a large part it is because it is become clear just how poisonous the culture around health care is these days. It is no longer the case that everyone is doing as much as they can for the patient. For many, probably the majority, of health industry workers these days the top priority is avoiding getting the blame if anything goes wrong. Because I now have to live within this culture, I have to be very wary about what I say publicly, just in case it could be somehow twisted and used against my mother, or against me.

Today Tor.com is running a series of posts in memory of Jay Lake. He is, of course, still very much missed by the science fiction community. The recent convention season has rubbed that in. And now, as I am starting out on the process of nursing someone who has cancer, I am starting to get a much better idea of what those close to Jay will have gone through while he was ill. It is a horrible disease, and I am so grateful to Jay for all of the work he did to help to find a cure while he was able to do so.

The posts on Tor.com are as follows:

• Lisa Groen Trombi
• Ken Scholes
• J. A. Pitts

Have some good cheese, everyone. Jay would like that.

We had a minor medical emergency this morning, in that my mother’s wound dressing started leaking blood. It didn’t look serious, but equally it didn’t look like something I should try to fix myself as up until now fresh dressings had always been applied by nurses.

So I phoned the carers, because that was the emergency number I had. They said I should phone the GP surgery, but that because it was Saturday I’d probably get a message to phone 111.

I phoned the surgery. There was indeed no one there. I got a message apologizing that I may have received a number of text messages today about appointments, which had been sent out in error. The answerphone system then told me that the message space was full, and stopped. There was no information as to what to do in an emergency.

So I called 111 as suggested, and got through immediately to a very helpful chap who promised to send a nurse. It took her about 3 hours to arrive because she was busy, but when she got here she was brilliant.

It is all very hit and miss. Some parts of the NHS still clearly care deeply about patients. Others are a complete shambles. Slowly but surely I am getting to know who I can trust and who I can’t.

If you have an aged relative who may become seriously ill, make sure that someone has a Power of Attorney for health and welfare. Without it you may find that NHS staff will refuse to give you any information about your relative’s condition, even if you are the next of kin. I am finding the staff at my mother’s surgery exceptionally obstructive in this regard. There is a carer form that I could get signed, but to do so I have to get myself, my mother and the doctor in the same place, and as the surgery blocks all access to the doctor that’s proving very difficult.

Of course the same is true of banking. You need a Power of Attorney for property & financial affairs in order to help a sick relative with the bank account. If you don’t have one and, for example, help them with online banking, you could get into all sorts of legal trouble.

Fortunately I have the latter. I note that getting this stuff is a complicated legal process — far more so than strolling up to a notary like you can do in the USA — and currently takes many months, far longer than the people who sorted ours expected. That’s probably because lots of people are suddenly finding themselves stonewalled by jobsworth bureaucrats and need to get this legal bypass arranged.

Update: I’ve just been speaking to the guy who arranged the Power of Attorney for my mother. He says the reason he didn’t advise getting the health version as well is because the NHS will often ignore them.

The situation with the care workers got a bit better yesterday after we were visited by some managers rather than just minions. The minions might see that things are going wrong, but they aren’t allowed to do anything, or recommend that we do anything. They are very tightly scripted. Managers have a bit more leeway to try to improve the situation.

So we now have what approaches a plan as to how to make mother’s life as comfortable as possible, under the circumstances, and to move her towards being better able to take care of herself. We may also get help from the likes of physiotherapists, and people who can provide useful gadgets that do not involve spending thousands on making changes to the house.

On the other hand, this is just the care workers. It is clear that the various agencies involved do not talk to each other. Here is an example.

Having had some surgery in hospital, my mother was sent away with paracetamol to use as painkillers during her recovery. Those have since run out. The hospital was supposed to have told the GP surgery about this so that appropriate prescriptions could be issued. The surgery (who appear to have caused a lot of the problems my mother is facing) says they haven’t heard a peep out of the hospital and won’t issue a prescription until they do. They also have no plans to send my mother’s GP to see her, despite the fact that she’s just out of hospital and can’t walk. So I bought some paracetamol, because they are cheap and easily available. When this morning’s care worker found out about his he tutted about taking drugs without prescription and said he could not have anything to do with that, despite having insisted the day before that we must contact the surgery to get more paracetamol.

My guess is that a note about taking non-prescribed drugs has already found its way onto my mother’s file at every single agency involved, because that can be trotted out as an excuse if anything goes wrong.

Anyway, my aunt will be here tomorrow. She has a long nursing career behind her. We’ll see if anyone pays more attention to her than they do to me.