‘We are in a new phase of Tony’s dementia. He has to know where I am at all times’

I am sitting on the cellar steps. In the dark. Hiding. I can hear Tony moving around the house calling for me. I do not respond. I do not want him to know where I am. I lean my head against the wall absorbing the comfort of darkness and the welcome coolness of the wall. The freezer rumbles occasionally. The only sound I want to hear. It has been a horrible day.

We are into a new phase of Tony’s dementia. He has to know where I am at all times. Logically, I understand his insecurity. The world is an increasingly frightening place for him. But, I cannot always be his human comfort blanket. I cannot always make the world a less scary place.

I hear him now appealing to the dogs to help find me. I will stay where I am until he gets close. Then I will go into the garden and pretend I have been there all the time. He will be distressed if he thinks I have been hiding from him. I will say I have been looking at the stars. He will stand next to me and together we can remember the beautiful night skies in Cavan.

How we used to sit on the doorstep of our home counting the shooting stars. I miss the wonder and the infinite space of it all.

The lines of a Sheryl Crow song have been going round and round in my head:

No one said it would be easy, But no one said it'd be this hard, and I could weep for the sorrow and pity of it.

Final understanding

Tony’s first wife, Gale, died recently. He was taken to visit her before she became bedridden and too ill. They sat together oblivious to anyone else and chatted. Tony had his arm around Gale and stroked her hair. They were finally and completely reconciled. No more bitterness, no more resentment, no more what ifs, just a final, peaceful understanding.

As Gale’s funeral ended Tony grabbed my hand and said, “Please, let me stay with you?” Who knows what was going on in his head, but his fear was real. He has always seemed, and believed himself to be invincible. No matter what, Tony is a survivor. The reality of impending mortality is a scary notion – one that is too difficult for him to articulate.

His lexicon has diminished and his speech is increasingly slurred and difficult to understand. Sometimes a roar of frustration is the most clear expression of his feelings. That and, more often now, tears.

And we have had a difficult few weeks. Things became much, much worse before they began to get better. I wanted to run away. I wanted to be in a place where no one would find me. I did not want to talk, or think. I did not want to smile, or be sociable. I did not want to care for anyone, not even myself.

Contemplating death seemed rational. Not because I wanted to be dead. Most certainly not, but a period of oblivion seemed like a good option. I am sure, for many reasons, people have felt the same way. It is struggling to get to the other side of the black and fast-flowing river that can become almost impossibly hard.

I still have moments of all-consuming anger and despair, but I have made it to the other bank. I am here and I can write about it. I can acknowledge to myself that I do not like Tony very much any more.

He is not my Tony and there is no reason why I would like this replacement. He shows no kindness, or thoughtfulness.

He no longer has the skills to be conversational let alone sociable. And I can now say all this without the worry and guilt of feeling I am a terrible person. I am not superhuman. I am not a saint. I am me, with all my frailties including the stubbornness that keeps me hanging on.

Optimism

I always want to finish my articles on a note of optimism. I do not want people to think my life is one of unrelenting difficulty. That is far from true.

What is true is that the clear sky moments when Tony is lucid and agreeable are less frequent than they once were. His confusion and insecurity are now the dominant factors in our lives.

Tony and I recently spent a few days with my sister who lives in north Wales. My sister and I tag teamed his care. There were two of us to answer the same questions asked continuously; to make sure he did not wander off, or start behaving inappropriately. Tony was happy and sublimely unaware of any difficulties he may have generated.

The local wine merchant also benefited as my sister and I rewarded ourselves at the end of a long and tiring day. The welcome sound of a cork coming out of the bottle and the glug of wine into the glass – perfect.

Steph Booth is a journalist and champion for people and carers living with dementia. Her husband, actor Tony Booth and father of Cherie Blair, has Alzheimer's disease, a form of dementia. She has written regularly for The Irish Times about the challenges they both face in living with the condition. While now living in the north of England, the couple lived in Co Cavan for a number of years.