‘Am I now play­ing God?’

My huge love for Tony brings some very tough choices

The Irish Times - Tuesday - Health - - Married To Alzheimer’s - Steph Booth 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 ch

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

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 be done.

Doc­tor visit

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 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 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 re­sults

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 have been 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, might have killed him?

It was 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.

PHO­TO­GRAPH: MATT KA­VANAGH

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

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