I spend the morning winding my way through labyrinthine bureaucratic processes, trying to change her mailing address with various businesses. Each time they need to talk to her and verify her identity. Each time she becomes more agitated, and more distressed. “Why are they asking me all these questions? I haven’t done anything wrong, have I?”
Each time I soothe her, explain that it is all routine, and calm her down until the next question strikes her, like a blow. “I don’t understand what’s going on! Why do we suddenly have to go through all this? It’s all settled, isn’t it?? What’s going on???” As her agitation grows, so does her fear. I have to tread carefully, not using the “d” word, as that would send her right over the edge. I explain that it’s all just paperwork, so that I can do her tax for her. I speak calmly and use small words. I agree when she asserts that, of course, she could do all this, but it’s awfully nice of me to do it for her.
She is bewildered, and becomes more so each time a document arrives in the mail – which they do with alarming frequency, even though we have the mail redirected. She is anxious that she doesn’t know what’s going on. She is terrified that she will fail to hide the fact that this is all beyond her.
She battles to hide the unhide-able. To pretend that, really, she is fine. She refuses to see a doctor, knowing full well that a doctor would see what she can’t bear to face.
I used to believe that when a person had dementia, it was traumatic but simple. You get them diagnosed, you get them treated, and you take care of what needs to be taken care of. But “step 1: diagnosis” is impossible without her consent. And she will never consent.
So we wonder why her gas bill is so high. It might be because she has the central heating permanently on, battling it out on hot days with the air conditioning. But the water bill is also high – could she be leaving taps on? We check the taps every time we visit. We turn the heater off, but it always comes back on.
I check for leaks, while she follows me around the house, becoming increasingly frantic. “I haven’t done anything stupid, you know! I wouldn’t have had the heater on in summer!”
“I know, but the thermostat is set to come on at 20, and your air conditioner is set to 18. I think they’ve been battling it out. You have to leave the heater off.”
“Of course I don’t have the heater on in summer. What’s high, did you say? The electricity?”
“No, it’s the gas.”
“I haven’t done anything stupid, you know. I’m not crazy!”
“Of course you’re not, it’s probably a leak. But you have to leave the heater off.”
“Of course the heater is off, it’s summer. I’m not stupid!”
“Of course you’re not.”
Next time we visit, on a very hot day, the heater is on and the gas bill continues to skyrocket.
So we try to find subtle ways to solve the insoluble. The stream of trauma flows steadily, and periodically builds to a flood. We dam one flow and, if we are very lucky, peace reigns for a week or two, before the next crisis bursts the banks and we frantically pile more sandbags. All the while knowing full well that every sandbag is temporary, and the stream is growing to a raging torrent.
I spend hours with her, holding my tongue, answering the same questions over and over again. I breathe deeply, but I can’t help absorbing her fear and distress. I feel myself becoming tense, until mosquitoes must bounce off my skin with broken noses if they try to bite. And then I go home and try to be patient with my children, when my every nerve is twanging wildly. I go to work and behave with professional propriety, when I want to scream and shout and cry at the injustice of it all, or curl up in a ball and pretend it’s not happening.
And then I go back to visit her, and turn her heater off.