‘I have, on more than one occasion wondered why I go on caring for Tony’

I wake up to the Today programme on BBC Radio 4. Recently, I was lying in bed listening to a piece about end-of-life, palliative care. This is obviously a subject I am interested in. Tony's lungs are now so poor he sometimes sounds as if he is drowning. The progression of his dementia can be taken as a given. I wonder if people suffering from other terminal diseases end their lives so disrespected as those with dementia?

As an individual and as a carer, I cope with the reality of social attitudes to dementia while at the same protecting Tony from this often harsh world of misunderstanding and indifference. My own included.

How impossible must it become for a person with dementia to survive in the modern world as the facility for understanding it diminishes?

Where does our intrinsic and fundamental respect for their humanity go?

I still need and want to try to understand what has happened to Tony. Where has he gone? I want some order in this chaos. I still want to buy into the idea of dementia being a measurable and individual disease.

In the anxiety and fear for the future I felt when Tony was first diagnosed, this thought allowed me some comfort. Being able to label Tony’s illness was a very important coping mechanism for me. That and being able to give him medication.

Comfortable lives

I have read so many articles and papers on the subject of dementia. Everything will have an explanation – will it not? That is the scientific basis on which we have progressed our sophisticated, technological, medically advanced and comfortable lives. But how far does this reduce individuals simply to their brain function?

While a diagnosis did, at some level, make acceptance easier for me, I cannot go with Tony back into his own history. That is where much of my loneliness in our relationship stems from.

My own social conditioning means I struggle to accept who he is now and find value, as he does, in his past. A past I mostly do not feature in.

I have, on more than one occasion, wondered why I go on caring for Tony. What do I get from our relationship?

I recently found an article in an academic journal by Stephen Katz. The article explores memory as a human capacity and its relationship to the ageing body. He argues we cannot progress the treatment of dementia until we understand the idea of personhood which informs it.

Katz focuses on the medieval “art of memory”. At that point in our history we found unity in mind, body, soul and memory.

As human beings we are, in our lives, our personality and our humanity, the sum of many parts, many experiences and many memories.

I believe we should make judgments about the ability to cope with the demands dementia makes on us. That it should be a kindness done with care and support. However, this should not undermine our perception of the validity and truth of long-term memory – difficult though we may find this.

Enraging

So much human interaction depends on the immediate. I find Tony’s lack of short-term memory enraging and frustrating.

He can, quite literally, take a few steps away from me then turn and ask me to tell him again what I have just said. I understand the notion of treating the question, each time it has been asked, as the first time. Perhaps, someone going for canonisation might manage that, but I gave up on that quest a long time ago. Now, at the end of my tether, I just yell.

It is one of the issues around the day-to-day caring for and managing of Tony's Alzheimer's. Why can he talk to me about his boyhood in Liverpool; his early acting career; his conversations with Harold Wilson, Michael Foot and Tony Benn and yet have to ask what those things are you put on your feet to keep them warm and where are they?

So, I now wrestle with the entirely reasonable idea that what Tony gives me are his memories. The only way he has to converse. Something that I have not seen in the day-to-day stress of caring for him.

I have discovered small, but for us, important ways into being part of them. We like to visit gardens together. Sitting on a bench, in the sunshine surrounded by gorgeous plants, is heaven. He likes to reminisce about being a boy growing in Liverpool.

Plant pots

His family home did not have a garden. There was a small paved strip underneath the front window where his mother grew flowers in plant pots. I can understand Vera’s need for plants in a resolutely urban and industrial landscape.

When Tony tells me about planting seeds for his mum, this love for and interest in even the tiniest garden is something I can understand.

Tony's idea of the perfect day out is a trip to RHS Harlow Carr. We look at the gardens, buy plants and have lunch in Bettys – an absolutely wonderful tea shop.

As we drive home through the glorious Yorkshire countryside, Tony always touches my hand and tells me how much he enjoys our little jaunts. In fact, he will say this several times during the course of the journey.

By the time we arrive home he will have forgotten any details of the day. What he will remember are the feelings of happiness and contentment.

Steph Booth is married to the actor, Tony Booth.