Married to Alzheimer’s: Slowly but perceptively, Alzheimer’s is stealing those moments we used to share

It’s when the little things that had once been part of daily routine go awry, you get a sense the frustration

Steph Booth with her husband Tony. Photograph: George Skipper
Steph Booth with her husband Tony. Photograph: George Skipper

I have always heartily disliked going to the theatre with Tony. He is the most tiresome and irritating of theatre companions. He does not know how to whisper, but insists on giving a running commentary on the production whether I want it or not.

On one unforgettable occasion we had been given tickets for An Inspector Calls. I spent the first half elbowing him in the ribs trying to make him shut up, so others around us could listen to the play. By the interval I was fuming, but I had devised a cunning plan.

Just before curtain-up for the second half I knew he would want to go to the bathroom. I had checked out where there were some empty seats. Seizing the moment, I went back into the auditorium and sat down in one of them. I happened to sit next to an elderly lady who said to me, “Darling I don’t blame you. What a perfectly, dreadful man.” I could only agree.

What we have always enjoyed together is watching films. Tony can sit through them mostly in silence apart from the odd grunt of approval, or displeasure.

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One of the things Alzheimher’s has imposed upon us is the loss of that shared pleasure.

Increasingly, he has found the whole cinema experience too tiring and the plots too complicated. The habit of some actors of mumbling their way through their lines serves to make it even more difficult.

However, I have recently discovered the convenience of borrowing DVDs from our local library. I honestly expected Tony to sit on the couch with me, but to doze through them rather than to watch them.

A few days ago I took out Calvary, starring Brendan Gleeson. It is a film I have wanted to see, but missed at the cinema. Tony's reaction to the film astonished me. Absolutely no confusion. Somehow, the film really got through to him and for the first time in a long time we had an animated and meaningful conversation. Tony was still talking about it over breakfast the next day.

I also thought it was an excellent film but, more importantly, I got my husband back. The articulate and thoughtful Tony. Even though it was only briefly, it was wonderful, but also heartbreaking. It emphasised just what we have both lost.

Despite his undoubted ability as an actor, Tony has always been completely hopeless on the practical front. In our family one of his most (in)famous moments was a few years ago when I was putting up some shelves. He came to watch and then assured me that when I had them up he would tighten the screws. He was utterly serious, explaining how his hands were much stronger than mine. I said nothing. When I had finished, I handed the screwdriver to Tony. I poured a cup of tea, sat down and waited. After several minutes I heard the plaintive cry, “Steph, when you tighten screws, which way do you turn the screwdriver?”

What is interesting is that Tony’s lack of practical skill used never to bother him. He was quite happy for me to do those little odd jobs. He once bought me a power drill for Christmas. I did not ask for one, but that is what I got. Now, however, he gets frustrated by his lack of skill. It seems all sorts of practical things, some he could do before the Alzheimher’s got worse, some he could not, are feeding a generalised, but sometimes overwhelming sense of frustration. Tasks he has repeated over a lifetime, such as making a pot of tea, become confusing. I am determined not to de-skill him faster than is absolutely necessary. A task I take over is a skill lost to him. Making tea is an excellent example. At what point do I stop him picking up a boiling kettle, or hot tea pot?

At the moment Tony’s confusion is limited to forgetting where things are – fridge, tea, sugar – and how long ago the last pot was made. He does not put a fingertip briefly on the tea pot to test how hot it is; he has started to put his whole hand around it. This has made him jump with pain a few times. The dangers are obvious, but Tony still considers himself the household tea monitor. It is one of the few things he can still do for me. How soon do I take that away from him?

Steph Booth lives in England with her husband, the actor Tony Booth