After a life-long addiction, Tony has forgotten he is a smoker

Married to Alzheimer’s: He also no longer eats chocolate, or much else

Tony Booth at home in his garden in West Yorkshire, England, with his  rescue lurcher, Eddie

Tony Booth at home in his garden in West Yorkshire, England, with his rescue lurcher, Eddie

 

“Where’s that cat come from?”

“What cat?”

“The one behind your shoulder.”

I turn to check the chair behind me expecting to see our old cat, Rosie, sleeping on it. The chair was empty. I turned back to look at Tony who was now cross.

“For God’s sake. It’s sitting on your shoulder!”

His hallucinations are becoming more frequent, but are never the same. Many moons ago he would have paid good money for similar experiences.

It is easy to shrug off these incidents when they occur during the day as these tend to be relatively harmless. It is when they happen at night they are frightening for Tony and exhausting for me. He recently woke me in the early hours of the morning. He was terrified and convinced there was a woman hiding under the table in the bedroom. His fear was palpable. I could not convince him we do not have a table in the bedroom for anyone to hide under. He did not want me to turn on the light as that would allow the woman to see us more clearly. In the end, unable to get him to accept there was nothing to worry about, I did switch on the light. It was a long time before he settled back to sleep.

I think perhaps the hallucinations may be due to a lack of food. Tony is asleep almost all the time. He does not want to eat and I have to be extremely assertive to get him to drink anything. He just cannot be bothered any more. He has forgotten he is a smoker and he no longer eats chocolate – both substances he has had a life-long addiction to.

Tony can no longer articulate. Whatever it is he is trying to say is obviously clear in his own head, but comes out of his mouth in a mostly unintelligible mess. He does not understand why I cannot make out what he is saying. Where he once would have been roaring with frustration he now simply flaps his hand at me to go away. He just wants to go back to sleep. That is the sum of our day.

Tony’s daughter Cherie recently came to Todmorden to visit us. With the help and support of our lovely friend Kev, we were able to get Tony into the car, so we could all go out for lunch. It was great. Tony did not say very much, but he clearly enjoyed the company. He was persuaded to have some soup. He was then offered a lemon meringue pie. When it arrived he was the most animated he had been during the whole meal. The pie was placed on the table. It was almost like a religious experience for him as he gleefully tucked into it. It was worth all the effort of getting him out just for that moment!

The following day our friend Ernst Walder came to stay for a couple of nights. Tony and Ernst have been friends for a very long time – since the early black and white days of Coronation Street. Ernst played Elsie Tanner’s Polish son-in-law. Ernst was shocked to see how thin and frail Tony is. Ernst was incredibly patient. He has experience with his older sister who also has dementia. Ernst and Tony sat out on the garden for hours smoking cigars and drinking wine. Ernst just listened to whatever sounds and words Tony was able to make. Tony enjoyed the cigars although strangely it did not jog his memory about cigarettes.

Ernst was partly responsible for one of Tony’s (many) outrageous escapades. Tony had a role in a film playing a German, maybe a German soldier, but anyway he was required by the director to say something in German. When he asked what he should say the response was just something in German. Tony then asked Ernst, who is Austrian, for some help. Between them they decided Tony should say something rude and sweary. Not knowing German either, the director was satisfied and no one else from the English side picked it up. Everything was fine until the film was released in Germany. I believe it caused a few waves. Ernst, who is a great giggler, was delighted to tell me he thought Roger Moore was also in the film. Unfortunately, neither Tony nor Ernst could remember the name of the film – which is a shame.

It was good to have company. I have known Ernst for the 20 odd years Tony and I have been together. The end game is a lonely place to be. It is impossible to explain how it feels. The slow, cruel inevitability of it. What I want now is for people to talk in plain language. I hate this faffing about, not saying the “D” word.

“What will you do, you know, when . . .”

“You mean when Tony dies? I don’t know. How can I know how I will think and feel?”

Shocked looks because I have said dies, dead or dying rather than passed. What is wrong? Are we so determined not to face up to death as a crucial part of living we cannot even say the word? I am not being brutal. I am facing my reality – even when others would prefer not to.

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