Married to Alzheimer’s: ‘I’m afraid if I go away he might die’
Tony is poorly now, writes Steph Booth. Even in the heat wave his hands are icy
Jeremy Corbyn: for the first time in Tony’s life he could not get behind a Labour Party leader
What a drama queen Tony has become. Currently, it is the thing that maddens me most. These things go in phases as other dementia carers will vouch. Throughout his illness I have held fast to the theory that if Tony can do something then he can jolly well get on with it. A skill lost is a skill never regained. The more he continues to do for himself the more he remembers. Brutal, I know, but effective.
Recently, however, he has tried to circumvent my regime. When he wants m e to do something he knows is going to be refused he goes into full on Lawrence Olivier mode with dramatic, plummy, wobbly voice – “But darling I love you. You know I do. You have to help me.” Though definitely not meant to be, it is funny. I start laughing. I have yet to tell him he is turning into a pantomime dame, but the temptation is almost irresistible. I have never claimed to be sweetness and light. I am clearly not. The ruling hegemony (mine) remains unchanged.
Unlike the UK following the general election. What a mess. And as for having the DUP propping up the Tories, what happened to British government neutrality? Another election this year, perhaps. We wait and see.
Tony was not remotely interested in the election. Hell would freeze over before he would vote Conservative, but he is deeply unimpressed by Jeremy Corbyn. His comments turned the air blue whenever he saw him on the television. I could not persuade him to vote this time, despite his firmly held belief everyone of voting age has a responsibility to do so.
I do not know if this is a result of dementia and a disinclination to turn out in wet weather, or for the first time in his life he could not get behind a Labour leader. I am upset. Not for political reasons, but trying to work out this fundamental collapse in his core beliefs.
Tony does not read any more; he cannot follow films; conversations are almost impossible, but he has always known what he believes in. I do not know what to think.
Anger is so destructive, but is a logical reaction when you see your own life closing down when there are still so many things left to do
We went away for the weekend following the election to a cottage in Nunnington. A pretty, little village in north Yorkshire where the dogs can come too. We have a circuit of places Tony remains familiar with and enjoys. When he says, “I remember this. We’ve been here before haven’t we?” – all the effort is worthwhile. I was talking to someone as we watched Tony pottering around in the sunshine and she said to me, “I don’t know how you do it.” At that moment I could truthfully say, “Because right now he is genuinely happy and it helps me to remember, he still must live the life he has left.”
I will try to hang on to that thought next time he is driving me crazy and I have had enough . . .
Tony is poorly now. He has chronic heart failure. Even on the hottest day of the recent heat wave his hands were still icy and purple. Just a short walk leaves him wheezing and gasping for breath.
He tries to tell me it is his childhood asthma returned. While I have learned the value of not arguing with him – an utterly pointless exercise – I am not wearing that one. I make it clear his problems are down to smoking for over 70 years. His choice. He pulls a face, but says nothing in response. There is no point in trying to get Tony to stop smoking, but as his daughter, Cherie, has said to me, she cannot understand why he carried on after his wife Pat Phoenix died from lung cancer. It must be one fearsome addiction.
It is difficult sometimes to stop obsessing about both the things you can sort out and those that are utterly intractable. I find myself staggering around under a dark cloud of responsibility.
I become more tired and angry. What am I doing allowing this to happen? But then, what do I have to do to break out of that space? Anger is so destructive, but is a logical reaction when you see your own life closing down when there are still so many things left to do. I love Tony, but I have realised I have to be more firm with myself – acknowledging the need for respite.
I am not doing anyone any favours staggering towards my own physical breakdown. I need more relief than Tony going three days a week to the Day Centre. I need a week, or two, without any responsibility for him. I have arranged respite periods over the next three months. Stupid as it must sound, I do not know what to do with that time.
I am also afraid if I go away he might die before I can get back to him.