Cherie and I held Tony’s hands. We sang as he slipped away

In 2013, Steph Booth began writing the Married to Alzheimer's column in The Irish Times, with her husband Tony's agreement. She wrote about life with Tony, who had been diagnosed with the disease in 2004, and the challenges of being his carer. He died on Septebmber 25th this year. This is her first article since his death. You can read Steph Booth's other columns on Living With Alzeimer's here.

Finally, Tony’s torment is over. His death, when it came, was peaceful. He died on September 25th at 10.40pm. Cherie, Tony’s daughter, and I were with him, holding his hands and singing to him, as he simply slipped away.

Well-meaning people have told me I should remember only the good times and not what Tony had lately become. In reality, for days after his death I could not think straight. My mind was a fog and my body many times refused to co-operate with instructions from my brain. It would not operate properly – I could not bend my knees, or sit without launching myself down.

There was an embarrassing moment at the local mosque when I had to sit on the floor. I was a few minutes late and everyone was watching me. Contemplating the fix I was in, I just dropped to the floor hoping I would not hurt anyone on my way down. Fortunately, I was caught by helpful hands. Once on the floor crossing my legs was out of the question. I was later pulled to my feet by kindly souls around me.

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It is night time when I feel physical pain. I assume it is my body recovering from heaving Tony off the floor when he fell, or moving him in the bed as I tried to keep him comfortable. I constantly turn in an effort to sleep. In my restless state I know Tony is not there. I miss him, so much.

Too much

Ever pragmatic and organised, I now find myself not coping too well. I am required to make decisions when all I want to do is curl up into a ball and sleep. My reality is almost too much to face. Please leave me alone. But no, here is another man with another set of questions and I cannot remember what you just asked me.

Sympathy in their eyes as they repeat the question more slowly and my eyes are closing, so I do not have to see them. All I want is Tony back. I miss him, so much. His pillow still has his smell on it. I go to bed with my face pushed into it and make believe.

“How are you?” people ask as they take my hand, or hug me. What else can they say? Their kindness and concern demands a gracious response. I thank them as they look into my face – seeking what, I do not know. I want them to feel better, so I tell them I am fine. Getting through each day. Can they tell I am not speaking the truth – that I am not fine? That my heart is breaking and I do not know how to go on? I did not know it was possible to hurt like this. Do I have to? Should I go on? The answer is obvious, but the questions go round on a loop in my brain – sometimes increasing in volume, sometimes sinking away to an insistent whisper.

I miss him

So many people want to tell me their personal Tony story. It is wonderful to know how many lives he touched with his kindness, humour and charm. He has become woven into the fabric of our small town. There were quite a few obituaries in the national newspapers, but it was the one in our local newspaper, the Todmorden News, that hit the nail bang on the head. There was a photograph of both of us on the front page and next to it – Tony Booth actor, campaigner and MAYOR'S CONSORT dies (my capitals). Absolutely the most important role he ever played! Tony would have laughed his socks off, if he could have seen it. I miss him.

The dogs are also feeling the loss of Tony. When I come in through the front door they rush past me to go and greet him. They now spend a lot of time cuddled up together in their box. Who will sneak them chocolate biscuits now? Whose knee will be available for afternoon naps? Jess, our Jack Russell terrier, would particularly have appreciated those comforts.

In the week before Tony died, I walked the dogs on the hills. Jess is convinced she can fly – a theory that works well until she lands. Leaping from a high wall she landed on a rock and ruptured her left cruciate ligament. Great. She needed surgery. I was not only nursing Tony, but also acting as a veterinary nurse to a crazy terrier.

Not alone

When I started writing this column it was with the intention of letting other carers know they were not alone and to help others realise a diagnosis of dementia need not be the end of the world. Caring for someone with dementia is tough, but there are moments right to the end of love, contentment and even joy.

Through the last few years I have done my fair share of roaring and carrying on when I felt I could not cope any more. But, a deep breath, a stiff gin and tonic, or some much needed respite and I have carried on muddling through. As was always our aim, Tony died at home. I kept my promise.

One of my great supports has been knowing people have been reading our story. I have not been alone. You have supported and willed us along our chosen path. I want to say a heartfelt thank you for all your kind letters and messages. You helped make our journey possible.

He was my North, my South, my East and West,

My working week and my Sunday rest,

My noon, my midnight, my talk, my song,

Read Steph Booth's columns on Living With Alzeimer's here

I thought that love would last forever: I was wrong.

From Funeral Blues by WH Auden