We had been home from our holiday and a family wedding in France only a few days when my husband, Tony, was blue-lighted into hospital. It was a huge shock.
He had gone off to the day centre quite happily, but the driver brought him home in a wheelchair. Tony insisted all he needed was a quick nap before supper. I was not convinced.
Within a short time I realised his condition was quite serious and, despite his protestations, called an ambulance. The emergency operator transferred my call to a nurse whose role it was to advise me what to do until the paramedics arrived.
Despite my stomach churning with anxiety and Tony being extremely cross, I forced myself to stay calm. It was the longest 20 minutes of my life. I was very relieved to have the responsibility taken from me.
Breathing difficulties
Tony spent three weeks in hospital with breathing difficulties. Unsurprisingly, given that he has smoked for the best part of 70 years, he was diagnosed with emphysema, with the added complication of a blood clot in his lung.
What I found most upsetting and disturbing was the speed of the onset of frailty. The consultant told me that Tony was really poorly. He could not believe how Tony had managed to carry on as long as he had, given the state of his lungs. He assumed it was the sheer force of my will that had kept Tony from giving up, but that was not going to work any more. I had to let the medical staff do their job.
I have to say, at that point, I did a lot of deals with God as long as he would make sure Tony came home.
One of the other difficulties was Tony’s Alzheimer’s disease. Hospitals are busy places full of bright lights, strange noises and a different daily routine. Tony was confused and frightened because he was so ill and because he did not understand where he was, what was happening or why I was not there with him to make things right. Tony thought I had abandoned him. He thought I had put him in a care home. It took days for him to realise he was in hospital.
A problem I did not manage to resolve was his failure to remember my daily visits, despite my best efforts and those of the man in the next bed. Each time I arrived he was genuinely surprised.
One afternoon I arrived to find an inhaler on Tony’s bedside table. I went to find the nurse to ask what was going on. She told me it was an inhaler. “I know,” was my response, “but why are you giving it to Tony?”
“To help his breathing.”
I asked whether she was aware that he had Alzheimer’s. She was. So, had she, or the person who had prescribed it, considered how problematic it would be for him to follow all the instructions? Breathe out hard; hold your breath; put the inhaler in your mouth; close your mouth around it; press the button on the top of the inhaler while sucking in hard and quickly.
The nurse looked at me. She looked at the inhaler in my hand. Then she looked at Tony lying pale and ill in bed. Looking back at me, she conceded that indeed it might prove a little difficult.
He now has a different inhaler that does not require him to think about so many manoeuvres.
To be fair, this was the only time there was any issue about understanding the needs of Alzheimer’s sufferers. The staff on Tony’s ward were lovely: efficient, but caring and warm. Once Tony settled into the daily routine, he was happy to tell me he thought they were wonderful.
Difficulties settling in
Since his discharge from hospital, the fact that he had become settled into another routine has caused difficulties. He is struggling to adapt. In hospital he repeatedly asked me when he would be allowed to come home. Now that he is home he is cross and insecure as he tries to make sense of once-familiar surroundings.
I cannot distract Tony by suggesting he snuggles down on to the sofa to read. I noticed before he went into hospital that he was not reading anything like as much as he used to. Now he has lost all interest. I continue to go through the daily ritual of buying a newspaper and making sure his books are to hand, but it has become a meaningless exercise.
I do not and, I suppose cannot ever, know if this is a process that would have happened anyway, or whether being institutionalised in hospital for three weeks is the cause.
All I can know for certain is, it is yet another downward step in the progress of his dementia.
Steph Booth lives with her husband, the actor Tony Booth, in the north of England.
