Married to Alzheimer’s disease
In the first of a series of articles for ‘The Irish Times’, Steph Booth explains how she struggled with the news that her husband, the actor Tony Booth, has Alzheimer’s disease
Life-changing diagnosis: Steph Booth with her husband, Tony Both, at home in the north of England. Photograph: George Skipper
An actor’s life: Tony Booth, left, with Una Stubbs, Dandy Nichols and Warren Mitchell, in the Christmas 1966 episode of ‘Till Death Do Us Part’. Photograph: Keystone/Getty Images
I asked my husband, Tony, to give up smoking marijuana before we moved to Cavan. It was 2003, and he had indulged in the habit for decades. We were moving to quite an isolated area, and my nagging campaign included the wish that we not give questionable individuals an excuse to turn up our doorstep.
The questionable people turned up anyway. One day a large black car pulled into the driveway. Three sharp-suited men, dressed like extras from Reservoir Dogs, got out and asked whether I knew where a certain person lived. I didn’t, and they left. Later, a neighbour told me our visitors were probably Belfast drug dealers. The man they were asking for was known to have got on the wrong side of them.
But it wasn’t these gentlemen I should have been afraid of. When crisis came calling it came not from outside the family but from within. Tony’s years of smoking dope were to have a far more worrying impact on our lives. Unfortunately, they helped to mask the early symptoms of his Alzheimer’s disease.
We had moved from England, where Tony was a well-known actor. During our time in Ireland I wrote a column for The Irish Times.
Actors can be odd, egotistical creatures. I can say with some authority that they would appear, for a good deal of time, to inhabit a parallel universe; inevitable, perhaps, given that they spend their professional lives pretending to be someone else. This behaviour can spill into their private life, making it harder to understand what is mere eccentricity and what are the warning signals of something potentially more serious.
For quite a time I assumed that some of the increasing strangeness of Tony’s behaviour, such as leaving things in peculiar places or forgetting what I had just told him, was simply normal, if exaggerated, male behaviour. I researched the subject and learned that his dope habit would not have helped his memory. On that basis I thought his mood swings and occasional verbal aggression, though not at that point particularly trying, were probably part of the process of giving up the drug.
Tony has always been, and continues to be, a voracious reader. When I realised he was sometimes having difficulty differentiating between fact and fiction, I understood things were more problematic than I first realised. Sometimes he would start a conversation with me that I was completely unable to follow until it became obvious he was talking about what he was reading as if it were part of our everyday reality.
By the middle of 2004 I was concerned enough to want to get him checked out. The crucial problem was how I was going to get him to visit the doctor. I knew he would be offended and angry if I even mentioned it.
I opted for subterfuge. I had a chat with our GP, explaining my concerns, and asked if he would call Tony in for a routine health check. I requested that part of the health check should be a referral for memory testing. I persuaded Tony the referral was part of a marvellous care package the Irish health system offered to the over-70s. He was deeply impressed by this forward-thinking strategy and, believing the test was offered to everyone, agreed to go.
After several trips to the psychologist in Sligo we were told Tony was displaying clear indications of the onset of Alzheimer’s. As I anticipated, Tony was angry and rejected the diagnosis completely – an entirely reasonable response. No one wants to hear they have a life-changing illness.
Alzheimer’s is a cruel disease. As an actor, he found the thought of losing his short-term memory unbearable. How would he be able to work? Tony has always been an actor. He never wanted to do or to be anything else. He has appeared in many films, television programmes and theatre productions.
Tony’s working life spanned more than 50 years, and he was adamant that no one, including his agent, should know of his illness. He was determined to carry on working. I think he believed that by shutting the news out and employing sheer force of will he would delay or even prevent the inevitable.
While we were living in Ireland, and for some time after our return to England, in late 2005, Tony’s symptoms did not seem to get much worse. He was able to work. Although he found it harder to remember his lines, he was getting through.