The situation with my mother is about as bad as it can be. She has drifted into a semi-comatose state from which no nurse or doctor can rouse her. But she does wake sometimes. Last Saturday, my Dad and brother went to visit, and after they had been there a short while, she opened her eyes wide and smiled and said, ‘Hello, dears.’ She then chatted with them for about an hour, albeit not coherently, with lots of her words jumbled. They didn’t think she knew where she was or what was happening to her. Since then they haven’t managed to coincide a visit with a one of her periods of consciousness. My mother seems to have lost the use of her right hand and arm, which means she has no functioning limbs whatsoever, and whilst she can eat and swallow, she has to be put onto her left-hand side in order to prevent the risk of choking. All this, of course, if they can catch her awake long enough to feed her.
And at this point, we heard from the Occupational Therapists that my mother is what they term ‘medically stable’ and must therefore leave the hospital.
This has made me very angry.
A couple of things you might like to know, should you ever find yourself in a similar situation. The first is that patients (and their relatives/carers) have the right to refuse to be discharged if they feel that they require more medical help. Secondly, whilst medical stability is a condition of discharge, it’s not the only one. There must also be a viable care plan in place for the patient to go home to. Here I think the intentions of the OT fall apart. My father, at 88, isn’t strong enough to move my mother around; he can’t wrestle her onto her side to feed her. We have lovely carers who’ve been coming twice a day, and are more than willing to do this, but what are the chances of my mother being awake when they visit? Bearing in mind that no one has yet been able to rouse her at will.
How about a care home? I hear you ask. Well, let’s fly quickly by the fact that a private care home costs £2.2k a WEEK for nursing care (of which my mother will be oblivious) and onto the fact that most will refuse to take an ‘unresponsive’ patient, for the excellent reason that carers prefer it if the people they care for can call out and say what’s wrong when in trouble or pain. My Dad’s ideal scenario, in any case, is to have Mum at home with him and to keep looking after her with the help of the carers they know and like. He insists on breaking my heart by saying that he was enjoying taking care of her, and paying her back in some small way for the 64 years of care she lovingly gave him. I just think it’s premature to be considering it. In my current brutal mood, I find it highly unethical that anyone might suggest he risks being responsible for my mother’s death by starvation.
And while I am in a righteous rage about care in the UK in the 21st century, I’ve been less than impressed by the hospital. Mum was admitted on a Tuesday morning 10 days ago, with all the signs of a stroke. There was a vague suggestion that she was in fact suffering from a UTI, that might be causing the confusion. She wasn’t given an MRI until Friday afternoon, following persistent, failed attempts to rouse her. The MRI showed that she had indeed had a stroke on the other side of her brain to the first, and this one caused by a blood clot. I heard last week that the doctors wanted to investigate where the blood clot came from, but that query seems to have vanished into thin air. Mind you, no one can even tell us yet whether she had a UTI or not. Yesterday she began to run a temperature and they took her for a chest x-ray, which was clear. As the nurse was puzzling over this, my brother suggested that maybe she had a UTI? The nurse brightened and said, oh we can test for that!
Give me strength.
I now have a fire lit beneath me and can do nothing personally for my poor mother, except collate all my reasons why she requires more medical attention that she’s getting. Feel for Mr Litlove, who is showing up on my fixing radar, too. This time last year when we were in Somerset, he was at the workshop. He left before eight in the morning and came home only when they threw him out. He was active and engaged made a ton of things and spent his spare time designing. Now he’s back here and working alone, he’s fallen back into a fretful, procrastinating mode, worried about everything. He needs people around him, but there are no workshops in our area, no collectives. I’ve said to him that I’d help him start something, though of course that’s easier said than done when you need lots of tools and machinery for people to work with, and Mr Litlove is one of life’s turner-uppers, a joyful participant and not so much a pioneer. Anyway, this morning I woke up and felt that life is so, so short, and so uncertain. We have to make the most of every little bit of it that we can, and we have to get out of our own way, as difficult as that may be. I told Mr Litlove as much, and in the wake of such troop-rallying, he is now getting on with things, poor man.
But I’m having a moment of clarity here and they don’t come along very often, so I have to make the most of them when they do. I could just say carpe diem, but that doesn’t tell a person how to seize that day. Do what makes you happy – or no, I don’t much care for happiness as a measure of success because it is a contrary and fugitive feeling that is best enjoyed as an unexpected by-product. No, do what makes you proud of yourself. Do what makes you feel alive. Do what will make you feel satisfied and content. Bearing in mind that it’s impossible to do all the things – we’ve had that one forced on us for decades and it’s a direct route to manic and frantic states, to being headless chickens and blue-arsed flies, enjoying nothing. Only simplicity and spaciousness are effective antidotes to stress. No, there have to be priorities and choices so there can be focus, but choice doesn’t mean loss; it means triage. First this and then this. Making mistakes is irrelevant; you often have to go wrong to go right. We spend so much time being so careful with ourselves and being frightened of all the wrong things. Just do it. Whatever it is that you want, whatever it is that matters. Do it now.
