Dementia, Tony and me: Steph Booth on being married to Alzheimer’s

Grey mist. Living in the west Pennines, an integral part of the winter experience – not unlike living in west Cavan. The only known cures for this hardship are steaming mugs of tea and slabs of hot, buttered toast. But this was no Pennine mist. It was soft, warm and inviting and all I wanted to do was move into it and let it embrace me. I had been sitting in mud on a freezing December night for well over two hours. I had slipped on a hill in the local park and landed with my legs twisted under me. I managed to turn myself, so I was sitting upright but, my left leg with its smashed femur was stuck over the right leg. Some help arrived more or less straight away, but the first responder only had Entonox and what I really needed was an ambulance. There wasn’t one available anywhere in the valley. The analgesia was making my head feel tight, but worse I was really cold. All I wanted was to drift into sleep.

Maybe, it was the effects of the Entonox, or hypothermia, but as I sat in the dark on the hillside I found myself searching the shadows for Tony. I was looking for ghosts, for some indication he was there with me to help me through the agony. Although Tony was always utterly hopeless in a crisis, I was desperate to feel his presence and reassuring touch. I could understand, even through the pain that was not going to happen. But it did not stop my need and to be honest, if I had been capable of thinking straight there was no way Tony would have been out on a freezing cold December night. He hated being cold.

The cavalry arrived in the shape of the wonderful mountain rescue team followed shortly by an ambulance and, after three hours of sitting in cold, cold mud, I was taken off to hospital to have my left thigh put back together. There was one particularly surreal moment in Resus just before I was taken up to the ward. The place suddenly filled up with armed police officers who were tooled to the teeth, even wearing those masks where you can only see their eyes. I closed my eyes for a moment wondering if it was the morphine, but no they really were there. Then I heard one of them say, “No, don’t worry. You’ve been shot and we’re here to stop them having another go.” After all I had been through that night that really was the last thing I needed to hear. Where was I going to hide in the event of a shootout? Exhausted by everything that had happened I started to laugh. My friend Karen gave me a surprised look. But, this was exactly the sort of bizarre moment that I learned to expect living with Tony Booth. As, Michael Foot, a former leader of the Labour Party, once said to me, “You must always expect the unexpected if you are with Tony.” It seemed nothing had changed.

Industrial quantities

Yet in reality, since Tony’s death much has changed. Among other things, strange though it may seem, I found food shopping hard. It was more than the downsizing required after my boys left home and I no longer needed to buy and cook industrial quantities of food. It was the realisation there was only me to buy for. It is hard to shop for one. All those two-for-one offers in the supermarket are pretty meaningless and the quantities in bags are far too much. I throw food away, which I hate to do. There are very few things that can be bought unpackaged, allowing me to buy how much I actually need. The supermarket world is not set up for those of us who have become one, no longer two. My loneliness is made manifest in the supermarket aisle.

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Loneliness is a strange thing. I am surrounded by the love of family and friends, so how can I feel alone? Why do I have this small, but solid core of aloneness that sits inside me? Sometimes I don’t notice it too much, but other times it seems to expand and seep into every last bit of my mind and body. I now feel that as well as loneliness, it is also trauma I am dealing with.

When I was looking after Tony it was a case of getting my head down and coping. It has taken me the almost 18 months, since Tony died, to understand how traumatic his dementia was for both of us and how much effect it continues to have on me. Looking for professional help, support and understanding is tough enough when you are a dementia carer, but once they have died there is nothing. Everything stops immediately. There is an assumption that you, the carer, are going to be fine now, so I was wiped from the bureaucratic memory and abandoned to get on with the rest my life. I contacted my local council some weeks after Tony’s death to sort out my local tax payments. I was told I should have contacted their office the day Tony died. Recently bereaved or not, these things had to be sorted immediately if I did not want to be summoned by the magistrates.

Putting casual cruelty to one side, my overwhelming stress was the result of not understanding what was happening. The not knowing what might happen next. The not knowing how it might end. The not knowing if I had the strength to cope with all of these unknowables. It should not be like this. No one should have to go through this alone, but so often we do, not realising until afterwards the stress we were under. We watch and absorb the trauma of losing someone to this dreadful disease.

Reality of dementia

Where are the doctors and other professionals who understand not just the scientific stuff, but also have the compassion and the willingness to listen to what it is really like on the coal face? The lived reality of dementia for all those whose lives are affected by it?

It is impossible, unless you have gone through it, to understand what dementia does, not only to the person who has it, but also to their carer and family and friends. Why won’t the professionals listen to carers and accept their evidence as valid? A few years ago I was invited to speak at a conference of psychologists. When I finished there was a deathly silence and I thought, “Well, that went down well”. In fact, for many of them it was the first time they had listened to someone talk about exactly what Alzheimer’s was like to live with and care for. Was this a moment lost? Should we have been organised enough to set up a working group to discuss and develop dementia policy from a multifaceted approach? Sometimes, I think dementia research is a litany of missed opportunities.

I lived through Tony’s suffering with him as he realised, but did not understand, something awful was happening to him. Then the last passive phase when all the fight and fire had gone and he was so needy. My heart was broken.

The garden was therapy for both of us. Tony found peace sitting in the sunshine, snoozing and watching me as I worked. He was happy making “helpful” suggestions. For me, the sometimes-hard physical work was a release of tension. Aching muscles helping to soothe an aching heart. I love being outside planting, thinking, getting my hands dirty and persuading the plants to do their best. Like some gym mistress, I encouraged them with, “Well done that girl” and “Come on, just try a little harder. You know you can do it” or, as a last resort threatening, “Are you sure you want to end up in the compost?”

My exhortations paid off last year when I won gold in the Todmorden in Bloom garden competition. Never mind Chelsea, or any other highfalutin’ garden competition. Winning in this competition meant I really had made it as a tip-top gardener. There was stiff opposition. Tony would have been thrilled. He might even have suggested we should go out and buy more plants – an addiction we shared. Smell is so important for pinging memories into our head and I made sure to fill the garden with lovely, old-fashioned smells. Lavender, thyme, stocks and roses, but only roses with a scent. I can never understand the point of a rose that has no scent.

Time and space

Besides the garden, writing my book occupied a great deal of my time. I started the book in the June before Tony died in September. As you might imagine, at this point the writing was going in fits and starts. For one thing I was not getting much sleep. Tony was sleeping a lot during the day which meant he had restless nights and bad dreams. For another, it was hard to concentrate when he wanted to be with me all the time and became anxious if he didn’t know exactly where I was. Tony was really pleased I was writing for Penguin, but could no longer understand I needed time and space to be able to focus. Much as he wanted me to write, his need for my constant attention was greater. Tony liked to sit on the couch in my study as I read to him what I had written. I do not know how much he followed as his concentration levels could be measured in minutes by this time. What it did mean for both of us was that he was still involved in my life and things outside the home.

The book came out of my Irish Times column, Married to Alzheimer’s. When Tony was first told he had dementia, he refused to accept the diagnosis. There was no way he was going to be labelled demented. Eventually, after a brain scan he accepted he had Alzheimer’s because it sounded like a proper illness. Semantics was everything. I suggested to him that perhaps I could write about his illness. It was after all a logical progression to his involvement in the UK campaign for better rights and social care for pensioners. At first he kicked the idea out of the park until he decided it would be good to talk about Alzheimer’s. He decided this was a way to get the illness out in the open, and perhaps help people in the same situation to understand they were not alone. It is a disease that is no respecter of background, gender or profession. It is completely indiscriminate.

At least in the early years after Tony’s diagnosis, there was little change in his condition. It was easy to be optimistic even hopeful that his dementia would have little impact on our lives. He was more forgetful and he did get more confused, but not in any way that really bothered us.

Tony continued to work as an actor for several years after his diagnosis. It was a tentative opinion given by the psychologist who could not be sure if Tony’s symptoms were signs of dementia, or the result of decades of smoking dope. It meant Tony could ignore it. It also gave me good cause to pretend that, of course, I would cope. Looking back I do not regret my optimism, I do not see it as foolish. The dementia experience is unique to the person who has it. No two stories are the same, so how can anyone prepare or plan for what might or might not happen? How can you ready yourself for something you cannot know? I believe our ignorance allowed us to be happier for longer, unburdened by any knowledge of what was to come.

Outrageous escapades

And allowing myself to be happy even when things were pretty dire was important. I needed good times to look back on. I can now smile at some of the times Tony and I shared. I don’t feel guilty any more when I laugh with friends as we swap stories about some of his more outrageous escapades or statements. Laughter brings me as much release as crying did when Tony first died. I am constantly surprised by the tales people have to tell me about him. Knowing how much he was loved has also helped me to come to terms with his loss. I know it is a loss others share.

I have been asked how difficult it was to write my book. The truthful answer is the writing of it wasn’t hard at all. It was almost as if I was writing in the third person. Shock I suppose. It got really tough though once I had to re-read it for the editor and copy editor. Then I sobbed buckets. That was when it became real to me. The book took my experience and gave it shape and a solidity it didn’t have when I was going through it. Did we really go through all of that?

I find the best cure for my wounded spirit is wide open space, especially the coast. I took Tony’s ashes to Orkney and, when the wind was in the right direction, released him to return to his Viking ancestors.

I have been back to Orkney since then. It was a good place to focus on finishing my book and having bracing walks with the dogs on long, sandy beaches. I did go back to where I scattered Tony’s ashes for a chat and general catch-up, but crossing the causeway I managed to face plant on slippery rocks giving myself a black eye and a broken cheek bone. Fortunately, no one was around to see the indignity of it. I can imagine the comments my husband would have made about my clumsiness.

I often hear him in my head and feel him at my shoulder encouraging and chivvying. Tony made me promise to finish the book. There were a number of times when I didn’t want to and I tried to persuade myself he would never know. The thing is, I would know and having a conscience can be such a nuisance at times. But, it is done now. Every dementia story is different and ours is just one of them. If the book helps even one person to feel better and to recognise they are not alone; if medical, or research specialists read it and their understanding of dementia is broadened then Tony and I will have achieved what we set out to do.

I miss him so.

Steph Booth is a former Irish Times columnist. Her Married to Alzheimer’s articles between 2013 and 2017 described her experience of caring for her husband, the English actor Tony Booth, who died of the disease in 2017. These articles have formed the basis of her new book, Married to Alzheimer’s (Penguin, £12.99)