I haven’t posted for a while as I and the OH have been heaving with cold, one of those good old fashioned up all night coughing jobs. Fairly typical of this time of year you might think. Except this year, like almost everything associated with dementia care it poses a moral dilemma.
On Monday the OH was sneezing and awful so I knew he wasn’t well enough to drive to see my mother, especially in our car. As well as having lost the rubber under-plate thing that stops the engine falling bonk on the road it now has a back passenger floor well that is permanently wet because the door seals have failed. We bought a second hand car that would be fine for tootling around town but which hasn’t been up to the job of sometimes 160+ miles a week for three and a half years. It has held up manfully but looks increasingly like a self-destructing clown car, probably all that will be left is the honk. To go any distance in it you need to dress up as for an Edwardian car rally, as the floods spraying up from underneath meet the rain pouring down through the doors. Not suitable transport for someone with a cold.
When I came down with it on Monday evening, that settled it, I ordered the groceries to be delivered to my mother and took to my bed. She and I talked on the phone, she didn’t want me to go and I certainly didn’t want to infect an old person with breathing difficulties.
So far, so not very good.
And then my mother started dying, possibly. Or equally, possibly not. She is struggling with breathing, no doubt about that. On the other hand last time this happened the doc monitored her oxygen levels and they were 97% of normal. Then, for someone who cannot breathe, she was wonderfully vociferous on the phone five minutes ago. She has asked for emergency doctors, so an ambulance has been sent. But if they take her to hospital she will be very much worse with regard to dementia and not necessarily any better otherwise. As I pointed out on the phone, if she wants to die in her own home she has to stay there.
It does not help that hystrionics has always been my mother’s specialist subject. She has never even been able to say she has a headache without putting the back of her hand on her forehead and fluttering her eyelashes. If she were an actor in a tragedy the death scene would last considerably longer than the rest of the play, with the principle actor getting up several times for applause and bouquets before lying back down on the stage, closing their eyes, feeling around for the fake dagger and sticking it under their arm and so on for a while or several whiles.
If I go and take up residence, I will sneeze all over her and then she’ll get it and I really could kill her, when the probability is that she will recover and in a few days forget anything has been wrong. I also do not want to panic her into thinking she is dying when she is not by turning up and moving in. And of course, if she really is dying I should be there, giving her a cold won’t make any difference.
What would you do?
What I’ve done is discussed it with everyone, including my mother and decided not only not to go but to continue absolutely as normal because continuing absolutely as normal is always the best thing for dementia. Normal is calm. Normal is what we are used to and can cope with. Normal is not frightening.
It is hard to enter the mindset of someone with an eroding brain. When you consider what a brain is and how it works it is not too difficult to see how panic could have all sorts of undesirable consequences. One of the first things all paramedics are taught to do is to be calm and reassuring. So that’s what I’m doing.
Privately, of course, the agency carers know to tell me if things are imminent. Our rule of thumb is that if my mother can be heard several rooms away, she is probably OK, if things go quiet we start to worry.
I don’t know if it helps to know, or not, that several of her family members have died very suddenly, in fact suddenly while everyone is out of the room seems to be the general rule. I have told the carers this so that no one ends up with a guilty conscience because they went to the toilet or to make a cup of tea.
Meanwhile we continue as usual. Calmly as usual.
So calm, normal, nothing unusual, nothing alarming, nothing we can’t deal with. The fact that I am going to be working, very calmly right next to the phone for the next 24 hours is beside the point. The worst thing is that this could happen several times at varying intervals.
You wouldn’t think it was such a lot to wish for, to die in your own home, would you? It’s what most of us wish for, I think.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~#
Whatever next?