Despite my hollow, personifying quips about the loathsome, invasive Ms Alzheimer’s – and the combative language widely used in the media – dealing with illness is not a fight. It isn’t something you battle against. You simply have to find ways of living with and through it.
I suppose “journey” is a better metaphor and one lots of quite wise people use along the lines of “Thinking of you both and your journey”. Pilgrim’s Progress maybe? Well there is certainly plenty of bumpy terrain along the way as well as smoother bits although neither My Loved One nor I harbours any religious delusions about ultimate arrival at the Celestial City.
On Saturday I reached Bunyan’s Slough of Despond. Not for long but just for a few self-pitying minutes I could feel its miserable muddiness churning beneath me.
For me it was a two show day. I had to review Stories on a String (jolly and charming) at Little Angel Theatre in Islington in the afternoon and Cosi fan tutte (variety, spice of life and all that) at Opera Holland Park in Kensington in the evening. As usual I’d intended to write the first review, and on this occasion also an overdue feature, in a coffee shop and get something to eat in the gap.
The problem was that I’d planned to take MLO to the evening opera because that’s very much his thing. As I’d first organised it, that would have been fine. But then – foolishly maybe – I promised to review the children’s show as well and that meant he’d have to come with me to both.
In a previous life I would have asked him to meet me in Kensington at say, 6.00pm, for a pre-show bite. That is no longer an option for two reasons.
First, he wouldn’t be able to manage the journey. Although he can still do simple one bus A to B journeys on his own the thought of his arriving at a mainline railway station, finding his way onto the right underground line, remembering his destination and finding the agreed rendezvous is, well, unthinkable.
Second, as I’ve said before, he can no longer do doors, keys, locks and the intruder alarm so he is unable to secure the house in order to leave it safely. Someone else has to be there when he leaves home to make sure everything is done properly.
So I took him with me to both shows. By the end of the Little Angel piece it was 3pm and to say he was “wilting” would be a gross understatement. He looked drained and exhausted. He also, as usual, needed the lavatory. I steered him into Caffe Nero in Upper Street where I know there are decent loos, although in the event one of them was out of order. Cue for more weary hassle while I investigated, explained, told him to wait etc – with the kind, smiling acquiescence of one of the staff who took in the problem with one glance.
Meanwhile I bought tea, sat down – and hit the buffers. We can’t carry on like this, I thought. It was an absurd triumph of hope over experience to think he could cope with a day like this especially after a show at Chichester the night before. I reluctantly decided I’d take him straight home – which would just about give me enough time to get back to Kensington on my own although I wouldn’t get anything to eat and the overdue copy wouldn’t get written.
I shed a few tears of self pity. Did I really sign up for this bloody nightmare? No, of course I didn’t but you have to get on with whatever life throws at you and normally I remind myself that there are many people far worse off than we are. We have each other. We’ve had a good life. Money is not a problem. We have two wonderfully supportive sons and so on. But for a while in Caffe Nero none of that worked and I felt utterly bereft and miserable.
When he eventually came back from the loo I told him what I’d decided – and that upset him too. In the end he was comforting me rather than the other way round. He also declared – quite assertively compared with how he usually is these days – that he definitely didn’t want me to bugger my day by taking him home although we both knew that would really have been his preferred option.
In the end we both went to Kensington, trudging at snail’s pace, as usual, through the tube stations. I wrote my stuff and he had a bit of a rest in a cool, quietish place with his Kindle while I worked. And Cosi fan tutte was delightful. He got through it all – just. I’d learned a lesson, though. That will be the last time I take him out for a long “demanding” day. One show at a time in future and I’ll avoid two consecutive days.
Or perhaps I should work less? Not an option. Family and close friends rarely suggest it because they know, as I do, that it’s working which keeps me sane. It’s a sort of escape. If I couldn’t get out and about to work, meet people in the real ongoing world and write about it then I really would topple headfirst into the Slough of Despond and then where would we be? It’s business as usual then – for as long as possible.
Cosi fan tutte, Ivestec Opera Holland Park. Credit: Robert Workman