The chaos inside and the chaos outside

The other day I had to go see my aunt, the one with Alzheimers. It had been a few weeks and I think she’s subsided a bit more. But ‘subsided’ isn’t exactly the right word, more like ‘been subsumed’. It’s like being slowly eaten.

I think when we talk about ‘Alzheimers’ we imagine it just means ‘losing your memory’: things like forgetting the stove was on, going out wandering and getting lost, not remembering people. Like gently settling dust, a kind of increasing vagueness, increasing helplessness, till eventually everything is sort of soft and white.

The Korean film ‘Poetry’ was really interesting in many ways, but it was annoyingly pat on the subject of Alzheimers, which is one of its major plot drivers. The heroine, a very active woman in her sixties,  begins to forget words and is diagnosed with Alzheimers. There is a major element in the film of putting her family affairs in order, over a not-very-long time frame, and there is a sort of fade-to-white feel to it. But forgetting words is a tiny thing, and apparently it is quite common for people to be able to mask it for years. My aunt was catastrophic and hallucinating before she failed an Alzheimers test – and even being catastrophic can go on for years, and the worse you get, the more you think you’re fine. The real giveaway is when, even on your best behaviour, you can’t string together even a remotely plausible sequence.

Even there, my aunt has bamboozled the social workers: she has such an authoritative voice, and uses such professional language, that she sounds like she knows what she’s talking about. Except that it’s gobbledigook. One day I was trying to explain to her why I needed to be helping with her affairs. She said, angrily: I know how to do it. I’ve done it for years! Yes, but you aren’t. Well I’m going to. No, you’re not – you haven’t been. Yes I will – I always have. But you’re not – hold up a red bill – there are lots of these and they need sorting out. Oh, that - peering at it with no comprehension – I’m going to do that, I just get tired. I say well that’s why I’m doing it. She sighs bitterly. The real problem is that I need a secretary.

It’s total chaos. Scrambled world. Jammed signals. No cause and effect, no meaning or structure outside what’s left of your own head. This is a very active state: the person with the dementia is constantly seeking to find meaning and to understand why  things happen. Why are those people in my house? What do they care if I eat dinner? Why are you telling me how to run my affairs? Why are there flies inside my fridge? Where is my buss pass? Why are you denying that there are strange people laughing at me while they reach their hands in through the walls to take my things? (Answers: They seem to like it here. They want to feel important. You think you know a lot. They sit on the top and fall in when you open the door.  Someone just walked in from the back garden and took it right out of my hand. You just won’t confront reality.) There is a lot of anger. There’s a lot of fear. There’s a lot of paranoia – of course. Blame. Grievance. A sort of feral defensiveness. Kvetching.

You stick to the same old saws. My aunt bought a new bed a few years ago, but the bed in her room is NOT the one she bought. THAT was the best bed you could get. She doesn’t know why it’s different. It’s just not the same. People took it. The storage people, or the builders. Of COURSE you can get a bed out the doorway. They just took the front window off. They did it because they wanted her bed. The carers are the same. Everyone always takes her things. She had to hide a box of mugs her sister gave her, she had caught the carer red-handed carrying it towards the front door. She had one foot OUT the DOOR. You don’t understand these things, people will do ANYTHING. You’d be surprised, would you, well I’m sure you would.

You sit and go over this stuff over and over and over again. Unfortunately (for me, I mean) the bed shop is on the way to Sainsbury’s.  My aunt is fed up with it all. She has no sense of humour. She’s tired. The carers don’t like dogs. She takes everything literally: I choose my phrases very carefully, as a whole conversation can be tediously and lengthily derailed by something like ‘I’m on the train’, or ‘I’m running late’ or ‘I could eat a horse’. There are no ideas, no pleasure for pleasure’s sake. Everything is flat, factual, sentimental – i.e., it’s a child or a dog – or it’s part of the grievance.

For her the physical world practically doesn’t exist. She can quite cheerfully say the dog is hungry without thinking that means she should feed the dog. (N.b., don’t worry. The dog is fine, has a glossy thick coat, isn’t thin, gets walked, and loves my aunt. Clearly she does get fed; I tend to take her a large pork pie when I go.) Other people are agents of her inner reality, not of themselves.

It’s amazing how what’s in the head is recreated outside it. This is what the visualisation people would have us believe, but it works differently from that. The world is the effect that you can no longer perceive the cause of. Years before any of this happened, she was admitted to hospital because of low blood sugar; she really does ‘forget to eat’. Last year she was admitted again, and it turned out to be dehydration. (‘They told me I’m all dried up!’) It isn’t that the outer world comes to resemble what you want; it resembles what you are.

The appliances are breaking down. No one uses the hoover but the carers – a scary-looking Dyson even I don’t know how to work. It goes, but it has no suction. I have to sort it out, the dog hairs are accruing and the carpet is fairly disgusting. The freezer stopped working, no one knew what the flashing light meant. The big TV doesn’t work; it never has. The washing machine and drier are constantly playing up. My aunt inveighs bitterly against the carers using ‘too much detergent’. And they do use too much, no doubt because of the immense dreadfulness of the bedding. My aunt denies that the bedding is filthy. She has no sense of smell any more. And she herself will take the bedding – which to her is only ‘wet ‘ – and put it straight into the drier. It’s a condenser one, & I appear to be the only person left who understands about having to empty out the condenser bit.

No one knows how anything works. It’s like leaving a three-year-old living in a house.

The scary thing for me is that it isn’t just her own perception, it’s real. On a very real level I feel a desperate need to distance myself from this flat, entropic, teeming, confused, static, hopeless, relatively joyless place. It’s atavistic – the fear of some of it rubbing off, or of somehow internalising any of it. Of being dragged to that level. I go home and have nightmares.

I’m not sure, but I think my aunt is unusually chaotic and catastrophic even for an Alzheimers patient. Certainly she doesn’t conform to the expectations of the social workers; they’re flummoxed by the awful complexity of ‘the problem’. I don’t know. She’s always taken things literally. She’s always found the world a bit of a mystery. (She did need her secretary.) Her house has always been messy. She’s always talked in non sequiturs. But everyone has an elderly relative with dementia, and the stories sound familiar. One minute it’s just the bog-standard situation – then you suddenly realise no one else ever seems to have this much utter chaos.

This isn’t even the post I thought I was going to write! That was going to be about the sheer physical effort, the trip down the road, the shopping…