Married to Alzheimer’s: A Review

by Michael Patrick O'Leary

This article appeared in Ceylon Today on September 17 2019

I was honoured to be invited by Steph Booth to the launch on March 6 2019 of her memoir Married to Alzheimer’s, which developed from a column she wrote for the Irish Times. The book is an account of her marriage to the actor Tony Booth, the father of Cherie Blair, Tony Blair’s wife. My own personal memories of Tony Booth date back to 1964 when he played Finn Brodie in a TV series called Catch Hand, about the adventures of two building workers and their efforts to find odd jobs around the country. One evening in the 80s, he sat in front of me in the Library Theatre, Manchester with his then wife Pat Phoenix. The play was Mike Stott’s Funny Peculiar, which was set in Todmorden where Booth and Steph went to live. Steph served as Mayor of Todmorden and Tony was her “Mayoress” He had appeared in a number of TV series before Catch Hand – going back to !959. He was best known for his role as the left-wing son-in-law of the racist right-winger Alf Garnett in ‘Till Death Us Do Part broadcast on BBC1 from 1965 to 1975. He appeared in many other popular TV series such as Coronation Street, East Enders, Emmerdale Farm, the Avengers, Holby City, The Bill and many feature films, with, amongst others, John Wayne and Michael Caine.

He particularly enjoyed live stage work but found it difficult to memorise his lines after being diagnosed with Alzheimer’s in 2004. As Steph puts it, Tony was: “holding on to words, still valuing their importance to him; how many thousands had he spoken and remembered through his life and career?” Booth had started smoking at the age of 11 and later suffered from heart problems. Tony Booth died of a stroke in September 2017 at the age of 85 with Cherie Blair and Steph on either side of his bed, singing to him and holding his hands.

Booth married his fourth wife, Stephanie Buckley, in 1998. She was from a Manchester Irish Catholic background; he was from a Liverpool Irish Catholic background. Steph mentions “his early, rackety lifestyle”. He nearly burned to death in November 1979 when, during a drunken attempt to get into his locked flat, he fell into a drum of paraffin.  Coronation Street actress Pat Phoenix took him in and nursed him back to health, and they lived together for six years. Phoenix’s own health subsequently declined, and the pair married a few days before her death from lung cancer in 1986. Tony Booth was married four times and had eight daughters by five women- five daughters with partners he did not marry. He had a daughter, Lucy Thomas in 1967 with Ann Gannon, who worked in radio sales, after a brief relationship; this did not become known publicly until 2002. Steph writes: “He has eight daughters that I know of. When I first met him there were seven … It was a minor concern before Tony’s funeral about what to do if any more women turned up at the church claiming to be either unknown offspring or unknown partners.”

He was not the ideal father-in-law to Tony Blair. Although he was involved in Labour Party politics from an early age he did not have much time for New Labour. He had been friends with Harold Wilson, Barbara Castle, Michael Foot and Tony Benn. During the firefighters’ strike in 2002, he said the government had “ruthlessly” squashed their pay demands. He also accused it of being “prepared to throw away billions” on the Iraq war, rather than spending the money on pensioners. He railed against “androids” at Labour’s Millbank HQ and accused the prime minister of stuffing the House of Lords with “Tony’s Cronies”. Despite this Blair gave a moving and humorous elegy (which is reproduced in Steph’s book) at Booth’s funeral. Blair said “I certainly never met anyone like him, which at times I was thankful for! But in time, I came to know him, to like him and to admire him.” The two Tonys might not have agreed on politics but Blair respected his father-law’s views: “His politics were unashamedly on the Left, but from that progressive side of politics which embraced social liberalism and a fierce defence of human freedom.” Blair admitted to learning something from Booth: “how to make a decent cup of tea, something I have never forgotten.”

Blair recalled “a time in Downing Street when I came up to the flat for a meeting with a senior civil servant and as we both wrinkled our noses, the civil servant said, ‘If I didn’t know any better, I would think you had been smoking weed, Prime Minister,’ to which I laughed nervously.”

It is difficult to get a handle on dementia because the term covers such a varied spectrum. Steph writes: “Dementia is unique to the person who has it and does not fit neatly into medical or research boxes. All we can do is wait and watch”. We all have our senior moments and it can be easier to remember what we were doing 50 years ago than to recall what happened yesterday. As people are living longer there are more ailments affecting older people. It is a good plan for we Oldies to keep our minds active and to keep our bodies fit but that will not necessarily protect us from neurofibrillary tangles in the brain.

My cousin, Pat Saward, was a huge handsome fellow. He won an FA Cup winner’s medal in 1957 for Aston Villa and went on to be captain of the Republic of Ireland team. Despite being a superb athlete, he died of Alzheimer’s at the age of 72 – the same age I am now. Iris Murdoch had a brilliant mind and produced many books on philosophy as well as novels. She died of Alzheimer’s at the age of 79. Bernard Levin was a brilliant journalist who took an active interest in many cultural pursuits, particularly music. Arianna Stassinopoulos (later known as Arianna Huffington) said of Levin: “He wasn’t just the big love of my life; he was a mentor as a writer and a role model as a thinker”. Levin began to have difficulty with his balance as early as 1988, although Alzheimer’s disease was not diagnosed until the early 1990s. He had to give up writing and died in 2004 at the age of 75.

Steph writes that Tony refused to be labelled ‘demented’ “with all those negative connotations.” He was embarrassed to have been diagnosed with Alzheimer’s but it was a physical disease that showed up on his brain scan. He encouraged Steph to write about his condition. “If I’m ashamed, what about those other poor buggers? Let’s get it out in the open, it’s about time.”

“As dementia caused Tony’s world to shrink, it was good to see he could still connect with, and take pleasure in, watching beautiful, living things. His imagination had not completely shut down.”

Individuals cannot cope with the suffering of others. “For a short while after Tony was diagnosed, people we knew would cross the street to avoid us simply because they had no idea what to say.” In my article about Henry Green’s novel Blindness I wrote: “A major theme of Blindness for me is how difficult it is for people generally to cope with the misfortunes of others. Even a reviewer on GoodReads dismisses the book thus: “John is blinded by a shard of glass and proceeds to wallow. And, try as I might, I was just not that interested in hearing about it.” One of John’s schoolfriends writes, “Poor dear amusing John. I must write to him, though what there is to say I don’t know. Really, these letters of condolences are very difficult”. There is a good deal of positive advice of the ‘buck up, old chap, there are people who are much worse off than you’ variety. To spare themselves in their helplessness people sustain the delusion   that John might regain his sight – despite the fact that his nurse has his eyeballs on her mantlepiece at home.

How often in real life do we hear people distancing themselves from the suffering of the afflicted by blaming the victim? A neighbour died recently. His mobility had long been severely restricted by a spinal injury but the immediate cause of death was a heart attack. Someone (a medical doctor) said, “I’m not surprised. He was a very heavy smoker”. Those around John want to be sympathetic but eventually he will be a bore and a nuisance.

So many people are suffering from one form or another of dementia but public policy is undeveloped.  In 2015, there were approximately 29.8 million people worldwide with Alzheimer’s. It most often begins in people over 65 years of age, although 4–5% of cases are early-onset Alzheimer’s. It affects about 6% of people 65 years and older. In 2015, dementia resulted in about 1.9 million deaths. In developed countries, Alzheimer’s is one of the most financially costly diseases, although drugs do not help.

Steph writes: “Dementia is an illness that affects the lives of an increasing number of people and their families and friends, and therefore urgently needs to be normalised. Cancer is shattering, heart disease is frightening, but as a society and as individuals we have learned to confront them.” Many countries are having to cope with an “increasingly ageing population and a shrinking work force, dementia is a critical issue facing the government”.

Steph believes that policy-makers should listen to carers who know first hand what dementia is like. It is “overdue for carers to have an opportunity to make their contribution to healthcare policy, express their views”. Government approaches the issue from the wrong angle: “rather than recognising a carer’s huge contribution to health and social well-being, government policy often appears to be predicated on the perverse notion that as individuals we are a drain on welfare budgets.” She describes the debilitating effect of having to wrestle with bureaucracy at the same time as bearing the physical and emotional burden of caring for her husband. “Coping with Tony was often easier than coping with the DWP, local council services, the medical profession, social services, well-meaning but uninformed bystanders and anyone else who might have an opinion about what was best for us.”

“We need to start with innovative and sustainable policies that would quickly make a positive difference to the lives of people currently living with dementia. With all my new free time, I would put myself forward to be a member of such a committee. Like so many other experienced home carers, I’ve got much I need to talk about and be involved in.”

There is a lot of sadness in the book. Tony could be violent as well as needy and there are some harrowing scenes. Steph rails “against the idea that one can ‘live well’ with dementia. This, I believe, is an advertising gimmick designed to make us feel better about dementia, while masking the reality of the lack of progress on finding the causes and dealing with outcomes.” Steph writes: “We rowed and fought, loved and laughed, were happy and sometimes sad, and generally faced up to the fact that if the relationship is worth anything then so is trying harder when the going gets tough.”

There is also a great deal of humour and vast amounts of love. It was a pleasure to meet Steph and to talk to the lovely people, friends and family, who made the journey to London from Todmorden (a place I know well) to support her.

Married to Alzheimer’s: A Life Less Ordinary with Tony Booth

By Steph Booth

Is published by Rider Books (Penguin Random House) and is also available on Kindle