“I had to get away from him. I knew I couldn’t leave him alone in the house, so I hid in the dark at the bottom of the cellar steps.”
There’s a comfort that comes from reading something like this, something relatable to your own life (though I hid in a treehouse, not a cellar). It eases the eternal guilt brought on by caring for someone with Alzheimer’s disease, and makes you feel a little less isolated.
Steph Booth’s memoir, Married to Alzheimer’s, describes her life with the late actor and campaigner Tony Booth, and the devastation the disease caused to their relationship. Each case of Alzheimer’s is as unique as the person afflicted by it, but I found her account both reassuring and frustrating in its familiarity. My former partner has the same cruel disease, and the myriad emotions Steph describes – the aforementioned guilt as well as anger, hurt, grief, exhaustion, loneliness and also love, memories, laughter – are remarkably similar to those I have felt.
Tony, father-in-law of the former Labour Party leader Tony Blair, was a tricky man even before his diagnosis. Steph describes him as an arrogant, dope-smoking recovering alcoholic. He had eight daughters from previous relationships when he married her. Theirs was a loving but volatile partnership: “he could be an absolute egotistical monster when things weren’t going his way”, she says of him while acknowledging that she was no saint herself.
In 2003, with a shared love of gardens and nature, the couple moved to Moneygashel in west Cavan. They were seeking a quieter life after being heavily involved in the Labour elections that saw Tony Blair become prime minister. There Steph began to notice that Tony was often confused, he was getting lost, his hand-eye co-ordination was wavering, there were changes in his appetite – but she put these symptoms down to ageing; Tony was now in his early 70s. She found it difficult, as I did, to discern the “merely eccentric” from behaviour she should be anxious about.
In Moneygashel, Steph wrote a regular Irish Times column about an urban English couple moving to rural Ireland. When this job came to an end, and with burgeoning concerns about Tony’s health, they decided to move back to the UK, where they had more support and where Tony would be nearer his acting work while he was still able for it.
Brain scan
Convincing someone who is frightened, angry and confused to have a brain scan to test for Alzheimer’s is an exceptionally hard thing to do. It requires white lies and cunning plans. “Tony refused point-blank to go to the first appointment for a scan,” Steph writes. “He was scared and I could not get past that ... the very idea that the tests might reveal a loss of short-term memory was unbearable to him.”
She did eventually convince him, and he was tested for the illness at their GP surgery by a psychologist. “The scan revealed Tony had Alzheimer’s ... at the end of our appointment she simply said to me: ‘Take him home and get on with it’.”
The middle stages of Alzheimer’s are often the most challenging and painful, while the patient is still largely lucid, before the disease takes hold and they become more passive. Arguing with someone who is bewildered makes you feel like a bully because they can’t argue back. Tony’s lexicon was “diminishing and his brain was not working fast enough. It was a most unequal fight.” If Steph guessed at words to prompt him, he felt patronised; if she stayed silent and waited for him to find them himself, he would accuse her of being unhelpful.
Alzheimer’s has its own dark comedy. Steph describes the chaos of travelling to Brittany for her son’s wedding: an over-full car of guests, a family dog that had sadly died on the journey, and Tony sitting forward, tapping her shoulder ceaselessly as she drove through a violent thunderstorm, asking again and again if she knew there was a dead dog in the boot.
Steph is also unstinting in her depiction of the parts with no mitigating humour. Acutely tired and overwhelmed as Tony became harder to reach, she began taking antidepressants. In his last days, when hallucinations were causing him to fall out of bed, she describes dragging him along the carpet in an attempt to get him back in, causing him to cry and wet himself and his skin to bleed from friction.
Scenes like these are harrowing, and Booth may be criticised for describing things so graphically, yet it would serve no one to write a book that is not honest about the reality of this illness. As Steph says, “cancer is shattering, heart disease is frightening, but as a society and as individuals we have learned to confront them. Can we now do the same with dementia please? Normalising it would help reduce the fear around it and allow us to approach it like any other disease – as something that might happen to any one of us.”
Smack on the head
Following an aggressive incident, Tony was admitted to a locked psychiatric ward, a place so many people suffering with this illness are relegated to. He had come up behind Steph and smacked her on the head with such force that she bit her tongue, causing significant bleeding. Despite this, with the wildly oscillating feelings that this disease produces, she says that when she went to visit him, “his vulnerability was heart-breaking. He was calm and pleased to see me, wanting to know when I was going to take him home.”
She writes about the lack of support offered to her under the NHS; I found dealing with the Irish HSE depressingly similar. Only after a crisis does further help become available. “Why is dementia care always about crisis management?” Steph asks. “Why had no one listened to me? I looked after him 24/7 so why was my experience not relevant?”
Tony died peacefully at home in September 2017, with Cherie Blair and Steph on either side of his bed, singing to him and holding his hands.
Towards the end of the book, Steph provides a list offering useful advice to those in a similar situation, but what is most evident throughout is her deep frustration and anger at the dearth of information and support.
There is no “living well with dementia”, especially as the disease progresses, despite the brochures of smiling, handsome models that are handed out to carers. It is vital, as Steph says, that clear and easily accessible information is offered to carers at the point of diagnosis. “While so much is going in to research, more must be done to assist both the patient and the family on the journey to that inevitable end.”
This is a brave, honest and important book that accurately describes the chaotic, exhausting, haphazard, guilt-filled, embarrassing and lonely role of caring for someone with Alzheimer’s; a disease that is a stripping bare of a human being – not just the patient themselves but also of those who love and care for them.
Julia Kelly is author of Matchstick Man, published by Head of Zeus
