The weather in September was so lovely; a real Indian summer. October blowing in with cold and rain has been an unpleasant surprise. Inevitably, winter bugs and colds are now also making their presence felt. I am enduring one of those horrible, tickly coughs that reduces me to a gasping, soggy mess. Painkillers and throat lozenges are the only things between me and total collapse.
In this situation, I need to protect Tony. When he was hospitalised some weeks ago, the first diagnosis was emphysema and a small blood clot on one of his lungs. It transpired these symptoms were the least of his problems. A heart echo test clearly showed he is in heart failure. A simple cold, let alone a chest infection, might well be enough to stop his heart for good.
Tony was very poorly, and there were a few days when we were concerned that he might not survive. I had the end-of-life conversation with his consultant. I am so grateful that Tony and I discussed what we each want. I was able to explain Tony’s needs and expectations to the doctor.
I told her this was one journey he wanted to make in peace. No bells or whistles. No bright lights. No painful or hopeless interventions. It was a tough conversation. I did struggle, but there was no faffing or uncertainty on my part.
This is clearly a really personal story. I thought hard, but decided to write about it because I now know first-hand just how important it is, particularly for the carer, to be prepared. This is one thing I know I got right, and I am relieved.
Tony has had to go into respite care while I recover from my cough. Despite frequent attempts to explain the dire consequences of him picking up my infection, he is unhappy and frustrated. I call him each day. He demands I come and pick him up and tells me he cannot understand why he is there, when all the other residents have dementia.
Although there are many downsides to Alzheimer’s disease, one of the pluses in our situation is that Tony does not understand how ill he is. He is therefore not fretting and is just getting on with his life. When he first came out of hospital he was very frail. He is considerably better now – due to my regime of benign brutality – and we can still get out and about, although I have to watch him carefully to make sure he’s not getting too tired.
Family time
A couple of weeks ago it was the birthday of Tony’s eldest daughter, Cherie. He was fit enough to travel down to Buckinghamshire to join in a celebratory family dinner.
The funny thing is, although Tony’s recent hospitalisation did not particularly make him think about advancing age, he is deeply affronted that his eldest daughter is now 60. How can she be ,when he is still 21 in his head? Obviously, he avoids looking in mirrors.
Cherie and I decided it would be easier for her dad if we stayed in a bed and breakfast. We booked into the Pheasant in the nearby village of Brill. From the moment we walked through the door, we were met with warm-hearted friendliness. Tony’s Alzheimer’s was not an issue. Once again, we came across people who have experience of the disease within their own families and circles of friends.
We can only keep repeating this: knowledge and awareness remove the fear factor from dementia and add understanding.
Socialising
One evening, while we were there, I was happily sipping a glass of Prosecco and chatting to other people at the bar. When I looked out the window I saw Tony with some other guys. They had gone out for a smoke. He looked incredibly happy and relaxed. It was hard to believe this was the same man who had been at death’s door only weeks before.
I tend to claim the credit for keeping him going. The reality is, he has an incredible life force. Throughout his life his tenacity in the face of life-threatening injuries or illness has been astonishing. When faced with questions about his Alzheimer's, he is fond of quoting Do Not Go Gentle Into That Good Night by Dylan Thomas.
Do not go gentle into that good night,
Old age should burn and rave at close of day; Rage, rage against the dying of the light.
Tony was 83 last week and he has absolutely no intention of going quietly into any good night – despite the fright he likes to give his loved ones from time to time.
Steph Booth lives with her husband, the actor Tony Booth, in the north of England.
