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First signs: an extract from Married to Alzheimer’s by Steph Booth

When Tony Booth was first diagnosed with Alzheimer’s it made little difference to the life he shared with his wife Steph and their family. But a few years down the line it was clear that they had no clue of the hardships ahead of them. In this extract from Steph Booth’s heartbreaking memoir Married to Alzheimer’s, she describes when she first noticed something was wrong with her husband.

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What I had begun to notice was that Tony, never a good driver, was becoming less skilful. Nothing too serious, but it was a little concerning at times. There was the time when Sam had been over to visit for a few days and he needed a lift back to Dublin airport. Tony insisted he would drive him – I think he wanted to spend a little more time with him. Within half an hour of setting off, they were back. Tony had taken a corner too fast, skidded on some mud, hit a bank and flipped the car over. I was not worried about the car, but I did go screaming mad at Tony for risking my son’s life. They were both shaken up, but neither of them was hurt. By a stroke of good fortune, another car had been coming the other way; the couple in the car had stopped to help and dropped them off at the house. Tony’s car was retrieved, unbelievably with very little damage to it. But I now began to have little doubts and niggles of worry about Tony’s concentration. I began to piece together all the other little moments of forgetfulness and confusion I had not really considered significant. Yet I still did not consider these to be signs of anything more sinister than ageing. My solution was to do most of the driving myself. It took someone more objective to join up the dots for me.

When our friends Jean and John came to stay, it was suggested to me that Tony’s symptoms might be caused by something other than his growing older. We have been friends for many years and they could immediately see some things had changed. As a GP, John knew far better than I did what signs to look for. He was of the opinion it might be wise to have Tony checked out, but there was no need to panic.

Jean and John are excellent company. On this occasion, we spent our time together walking in the mountains, then coming home to enjoy cooking food and drinking wine. They loved our house as much as Tony and I did. On one particular evening, while we were chatting and drinking wine, there was a knock on the front door. We all looked at each other. It was a dark winter’s night and we did not yet know many local people. When I opened the door, a priest was standing there. His name was Father Michael and he was calling to introduce himself. I ushered him into the kitchen where the peat fire was still burning. I put the kettle on and, excusing myself, went back into the sitting-room where John, Jean and Tony were sat silently. Not wanting to give the priest the wrong impression on first acquaintance, I instructed everyone to hide the wine bottles and glasses.

When I brought Father Michael into the sitting-room with his mug of tea you would have sworn we were joining a teetotallers’ group. Settling himself into an armchair, Father Michael seemed oblivious to the slightly awkward atmosphere and began chatting away. Oscar, our black cat, decided to join him, taking the space on the back of his chair. Jean and I were sitting on the couch and after a short while she nudged me in the ribs, rolling her eyes towards the armchair. To my complete mortification, Oscar had fallen deeply in lust. Purring and drooling, she was nuzzling the back of the head of the seemingly oblivious priest. Jean and I shared an agonised look before I took control of the situation and grabbed the cat, lobbing her on to the floor. Stalking away with that huffy, haughty look cats do so well, she went behind the couch. Without batting an eyelid at this intervention, the priest simply carried on chatting.

I had no idea where the glasses and bottles were hidden at this point. But I soon found out when Oscar, in vengeful mode, began pushing them over. As I began thinking vengeful thoughts of my own, to my horror an empty wine bottle rolled out from under the couch. But Father Michael was delighted, saying, ‘Oh, that’s good. I didn’t know you had the hard stuff. I’ll take a drop of whiskey, myself.’ Things then became very convivial and it was quite late by the time he left.

I had taken on board what John had said about Tony, but was happy at first to go with the ‘no need to panic’ part of his advice. Actors can be odd, egotistical creatures and I can say with some authority that they often appear to inhabit a parallel universe. Inevitable perhaps, given they spend their professional lives pretending to be someone else. This behaviour can spill into their private lives and by this point I was finding it difficult to discern the ‘merely eccentric’ from behaviour I should be anxious about. Tony was a voracious reader, but I began to realise he was sometimes having trouble differentiating between fact and fiction. He would start a conversation with me which I would be unable to follow, until it became obvious the people he was referring to were characters in a book he was reading. Tony was never one to let the truth get in the way of a good story, but this was different. This was concerning.

That was when I decided to act on John’s advice. Tony would have to see a doctor. I had to know what was happening. But getting him to the doctor would be no easy task. He would not go if I told him I was concerned he might have dementia. Dr Pat Harrold had, by then, moved to Tipperary and I didn’t know the new doctor very well. I went to see him to talk about Tony and to explain I had devised a cunning plan, which needed his co-operation, to bring Tony to the surgery.

What I wanted to do was to get Tony to the surgery for a physical check-up on the pretext that this was a policy introduced by the Irish government. This was true to a point and knowing Tony was something of a hypochondriac, I was fairly certain he would buy into it. At this point, the doctor was still on board. It was the next part of the plan he baulked at. I convinced myself it was not exactly a lie, but it was certainly being economical with the truth. I wanted the doctor to tell Tony that, as part of this postage-seventy check-up, the government also had a policy of checking for any deterioration in mental capacity. Carefully not mentioning ‘dementia’. The doctor took a great deal of convincing. I had to agree to carry the can for anything that might go wrong before he eventually and reluctantly agreed to my plan.

The checks revealed that physically Tony, apart from a bit of a smoker’s cough, was as fit as a fiddle, but the doctor was worried about dementia too, so he referred us to a psychologist in Sligo. Still believing my tale about the government health policy, Tony was happy to go along. There were times when, out of embarrassment, I wished I had not pursued this line of action. Tony’s default position, when he was uncertain, was to joke about and tell stories. This made it difficult for the psychologist, who ran various tests over several sessions, to come to any firm conclusions. Tony would not focus on the task in hand. Of course he wouldn’t, as the very idea that the tests might reveal a loss of short-term memory was unbearable to him. How would he be able to work if that was the case? He was an actor – it was who he was – and he never wanted to do or be anything else.

I had also made the psychologist aware of Tony’s dope habit. Even though Tony insisted it was irrelevant, when he spoke to me the psychologist was clear it made any diagnosis much more difficult and he could not provide a definitive result. What damage had the drug done to Tony’s brain? How many of his current problems were the result of dementia and to what extent was dope responsible for brain-cell destruction? Were the two interlinked? Who knows? I still hung on to the hope that Tony’s apparent mental decline was simply the decrepitude of old age.

We went home comforted by the psychologist’s indecision and carried on as we were, Tony because he would not – and did not – ever accept he had dementia. He believed that by shutting out the news and employing the sheer force of his will, he would delay, even prevent, the inevitable. For me, it was a strategy of not facing up to the reality of what dementia might bring and whether I could cope with it. We humans – well, me certainly – have an incredible capacity to hope against hope that everything will work out all right in the end. I cannot work out now if I was blasé or simply naive. Perhaps it is a good thing I had no idea what was coming down the track towards us.

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