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‘I know my husband better than anyone... Am I now playing God?’

Steph Booth on the huge love bringing tough choices. Will this be her last Christmas with Tony?

The way we were: Tony and Steph Booth at home in Cornahaw, Blacklion in 2006. Photograph: Matt Kavanagh

When I want Tony to look particularly tidy I shave him. On any other day he shaves himself. He’s not very good at it anymore. There are usually sweet little tufts of white hair left dotted around his face. The important thing is he is still attempting to shave himself.

Some time ago, I noticed a small lump in Tony’s neck. I shaved over it and he did not notice, so the lump was clearly not sore. Since Tony is a raging hypochondriac, I did not mention it to him – the hassle level would have risen exponentially. Anyway, given Tony’s state of health not a lot could been done.

A few weeks ago, I had to take Tony to the doctor. He had banged his shin and the wound was not healing. I was concerned it might ulcerate.

While Tony and I were with the doctor I mentioned, in passing, the lump. Within minutes the doctor had gone on to his computer and Tony had an appointment, the next week, with an ENT consultant. Fortunately, Tony had no idea what was going on at that point. He was far too concerned about his sore leg.

I have managed to keep us out the system for a number of years now. Tony and I have bumbled on coping in our own way. I took Tony along to his hospital appointment and it really was wham bam back into the system.

Advanced dementia

Initially the consultant suggested I stay outside in the waiting room. I declined his invitation. There was not a seat next to Tony. I was sat behind him out of his eyeline. Then the fun really started. The consultant clearly had no understanding of advanced dementia and the resulting diminished lexicon. For a few minutes it was a complete mad house. The doctor was frustrated with Tony not understanding him.

Tony, worried by a detailed explanation dropped into his default anxiety mode - ie being silly and trying to make jokes. At this point I decided to take control of the situation. I went to stand next to Tony’s chair and explained what the doctor was asking him to do. I do approve of medical staff explaining what they are about to do, but there are situations where this is not appropriate. This was just such a situation.

I said, ‘Tony, you need to bend your head back.’ He complied.

‘Open your mouth as wide as possible, please. Short, simple and direct instructions.

Tony was hanging on to my hand like grim death – which was just as well as without warning the consultant put his fingers down Tony’s throat, making him gag and retch. He then sent Tony for a scan of his neck and a biopsy on the lump.

By this time Tony was fretful and frightened. I continually reassured him everything would be fine. The scan went smoothly and though the biopsy was a little painful there were no further invasive examinations.

I took Tony home by way of a little tea shop in Heptonstall, where we had lunch. One of his favourite jaunts. Within a few hours he had, thankfully, forgotten about the day’s dramas.

Unfortunately, the lump which had remained static for a long time, decided to grow, stretching up towards his left ear. For the first time it became sore. I was already regretting mentioning the lump to our GP.

Biopsy

A week after the initial visit we returned to the hospital for the results. The biopsy had not provided a definitive answer. The medical staff could not be certain the lump was not malignant.

Obviously forgetting Tony’s confusion at the initial appointment the consultant talked to him about operating and removing the lump. As his neck was still sore Tony agreed enthusiastically. I was not included in the conversation. If I had been I would have told the consultant not only does my husband have advanced Alzheimer’s, he also has COPD [chronic obstructive pulmonary disease] and chronic heart failure. Not an ideal candidate for a general anaesthetic.

The soreness in Tony’s neck has now gone. What I thought was growth was only swelling from the biopsy. I have telephoned the hospital to cancel the MRI scan and arranged for his next hospital appointment to be scheduled in the new year. The System is not pleased with me. I have had telephone calls making this clear.

I know my husband better than anyone. I have always anticipated we would arrive at this point. Am I now playing God? I am tearing up as I write this. Tony is 85. He is very frail. Realistically, this might well be his last Christmas on this earth. Was he to spend it surrounded by the love and warmth of his family and our new granddaughter, or should I have let him endure invasive surgery which, in all likelihood, will might have killed him?

It is a no-brainer. But it still hurt to have to stand firm and make such a tough choice. I love Tony. I want him to be with me forever. That cannot happen. The only thing I can do for him now is to look after him and help him have a good and peaceful death – whenever that might be.

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 writes 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.