“I am truly grateful that Tony never forgot me and that I was able to keep my promise to him.” The promise Steph Booth is referring to is caring for her husband actor Tony Booth, and father of Cherie Blair, at home for more than ten years with Alzheimer’s Disease until he died.
“I am no saint and there were times when I thought I just can’t do this, but in the end I managed it.” Today sees the publication of the former Todmorden Mayor’s memoirs Married to Alzheimer’s: A Life Less Ordinary with Tony Booth – another promise she made to her husband before his death 18 months ago at home in Todmorden with Steph and Cherie singing at his bedside.
“There were times when I thought I just couldn’t go through with it after Tony died. It was too difficult. But the book deal came through three months before Tony died and he made me promise I would finish it. He would come back and haunt me if I didn’t.”
In the end, she says, she found the process quite cathartic if extremely emotional.
“I want people who may be facing similar challenges to read this and realise it is quite alright to be human, to not be perfect, to get frustrated and angry and just to know that it is okay to just try to do your best. I am not heroic, I just did what I thought was best at the time for the man I loved. That is all any of us can do. I also want people to know that there were good times amidst the dark.”
Steph was Tony Booth’s fourth wife and 24 years his junior. He was an actor, political activist and reformed alcoholic with eight children.“Life was never boring with Tony,” recalls Steph. “But I am a northern lass and can be pretty determined when I want to be.”
Her book outlines what life was like with Tony before his illness, which she suspects was exacerbated by his love of smoking cannabis. It is frank portrayal of marriage to a nonconformist, raconteur who loved nothing more than being in the limelight. Open and honest, but with heart and warmth, Steph reveals and the hardship of caring for Tony and losing herself in the midst of it. “There was no point writing it if I wasn’t going to be totally honest. At first Tony didn’t want people to know he had dementia, but he had been very involved in the National Pensioners Convention and he realised that this was of the biggest issues effecting older people. He said ‘if it helps, it helps.’”
It is clear Booth wasn’t the easiest person to live with but as the illness started to take hold the challenges grew more extreme. “Tony had always been an amazing storyteller but I realised that he was starting to mix fact and fiction together depending on what book he was reading or film he had watched,” she says of the time when she started to realise that all wasn’t well. But it took a long time before Tony was eventually diagnosed with Alzheimer’s in 2004. And this was just the start of what would be a ten-year battle for Steph on many fronts as she lost her husband to the cruel disease bit by bit.
Despite his loss of memory and sometimes inappropriate outbursts, Steph was determined that they would continue to live as normal a life as possible.
So when she was made Mayor of Todmorden she was determined that Tony would be her consort, despite his illness.
“One of the problems with how society deals with dementia is that we don’t want to know. We shut people away, I was determined that wasn’t going to happen to Tony. We still travelled for as long as we could, spent time in our garden in Todmorden and he loved being consort, although there was a bit a bling envy going on as my chain was more impressive than his.”
She pays tribute to the people of Todmorden in the book.
“They knew what we were going through and were so supportive. Tony used to love going into town on the bus, it was a little bit of independence in a world where he was more and more reliant on me. But he would get confused and people recognised him and would bring him home or make sure he was okay. It really helped.”
But Steph doesn’t shy away from the darker side of Tony’s illness. “The lowest point for me was when I had to have Tony sectioned,” she recalls of the time her husband hit her hard on the head and she was advised he needed sectioning. “I felt so guilty and when he left the house he looked at me with pure hatred, that is very hard to cope with.”
There was also the time he accused her of having killed all the frogs in their garden.
“I can look back and laugh now but at the time he was deadly serious. But he was no longer my Tony, my Tony was the man I married and will always love, this Tony was a different person with a cruel illness.”
Steph says one the of biggest mistakes she made after making the decision she would care for Tony at home until he died, was not to seek respite care sooner.
“When you are a carer you think you are the only person that can look after them, but there are people who can look after their needs you just have to find the right place. We did in the end, but not before I had pushed myself to the limit.”
As well as resonating with fellow carers, Steph wants to start a wider debate about dementia. She wants to see a cross party committee set up to urgently look at dementia in this country, but she says it must include the carers.
“What I have to say isn’t just anecdotal – it is the reality. We need to take action before it is too late. We have been pumping money into research and yet what is there to show for it? Meanwhile people are suffering every day. It is no good promising jam tomorrow.”
Anthony Booth was born in Liverpool on October 9, 1931.
During his National Service he discovered a talent for acting, entertaining his fellow conscripts in amateur productions. He went on to appear in Till Death Do Us Part, Emmerdale and Family Affairs.
He was ‘‘fiercely’’ proud of his daughter Cherie, who was a highly successful lawyer, taking silk and later becoming a judge. But it was her marriage to fellow lawyer Tony Blair – and his rise up the political ladder – which brought her father back into the spotlight.
Married to Alzheimer’s by Steph Booth – a life-affirming memoir from widow of the late actor Tony Booth, Rider Books, Published today £12.99