Married to Alzheimer’s: this column was Tony’s choice as well as mine

There are many kinds of moral dilemmas to be faced as we progress through our lives. As a child I remember trying to decide if complete openness was the best policy when facing the certainty of parental wrath.

Though to be honest I was always more concerned about my Irish grandmother’s reaction – a choice between simply being in trouble and being in it up to the neck.

What wouldn’t I give now for the simplicity of those choices? As adults we make easy decisions on a daily basis, hardly thinking about it. The answers are obvious. But then there are points in our lives where we face more complex, life-changing choices. They are not easily made, or so quickly forgotten.

Our decision, and it was our decision, for me to write about Tony’s illness was not a simple one. The shame factor around dementia is out there wielding its dark, powerful and negative influence. What would people think? Should this even be any kind of issue? What about our privacy? Mine as well as Tony’s.

How important did we or do we feel it is, as a couple, to talk about dementia in a frank and open manner?

Would we be harming ourselves?

Would we be harming others – our family and friends who may not want to be confronted with the realities of this disease?

Would they be ashamed and embarrassed by our openness?

What is privacy?

Privacy is a word that is bandied around. But, what is privacy? For me, there are two key questions. Firstly, what is the difference between privacy and secrecy if we choose to keep someone with dementia in the dark; if we dismiss, or avoid their questions or confusion around their illness and the decisions made for them in terms of who knows about their illness and what they know?

Secondly, controlling social connectivity and openness could be regarded as a means of enforcing privacy. It assumes passive acceptance on the part of the person who has dementia, taking away from them the ability to control their social situation. We justify this by claiming it is in the best interests of the individual, much as we do with children. However, is it ethical or morally acceptable to do this to adults?

Whose privacy are we then defending? Whose feelings are being spared?

We must all make our own choices. Not everyone will feel the same. I believe it is crucial to discuss with the person who has dementia and together make decisions on what is best for their own particular situation.

As carers we can then honestly know the wishes and expectations of the person for whom we are caring. Clearly, as with end-of-life choices, this is something that has to be done soon after diagnosis. An active decision rather than passive acceptance.

Tony and I came to the conclusion that insisting on our privacy would disguise our own complicity in, and acceptance of, public shame. He did not want to be hidden away. Dementia is now part of who he is. This was our decision, our choice, arrived at after much discussion and many tears. In the end it was our determination to dignify, through openness, what is a cruel disease.

Political activist

Tony has always been a fearless political activist. Until those with dementia and those of us who care for them feel we can move confidently into the public domain, we will not progress understanding, acceptance, or normalisation of this disease.

Encouraging me to write about his dementia is Tony’s final, political act.

Tony is now beyond decision making. He never liked making choices even when he was well. Now there is no chance of persuading him. But recently, a stray cat turned up on our doorstep. It was so small I thought at first it was a kitten. Closer inspection revealed adult teeth. It was obviously hunger and neglect that was the problem.

My first reaction was to feed her and then call the cat rescue people. Tony was horrified. How could I even consider not keeping her? This cat looked like a cartoon version of a scraggy feline. She was thin, dirty and had bald patches. A vision of large vet bills flashed before my eyes.

Having complained mightily in the past about Tony’s indecisiveness, what was I to do when he did make a decision?

The cat has now made several visits to the vet to be injected, spayed and generally sorted. I have bathed her, receiving only one deep cut down the side of my right thumb. I thought Annie, as in little orphan Annie, would be a good name. Tony enthusiastically agreed. He thought I meant Annie as in Annie Get your Gun. The difference in our personalities perfectly encapsulated.

Tony and Annie are now inseparable!

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.

Steph’s columns can be read on irishtimes.com/health