The indignity of dementia, a half-life witnessed by those who love them

When she was driving the Lexus into the last parking space, she noticed the woman with the platinum page boy hairdo.

She couldn’t remember her name, although she’d seen it written on more than one occasion just above her own in the visitors’ book. The woman with the platinum bob, dressed as always in pastels as if she was just about to board a cruise ship, was leaning up against the red brick wall beside the entrance, head tilted back, eyes closed. Enjoying the late afternoon sunshine, the other woman assumed.

It was only when she was almost level with her that she spotted the tears. Not even tears, really, just the shiny slug-tracks of recent weeping.

“Are you all right?” she asked, touching the woman’s arm. The woman, startled, opened her eyes and tried to focus.

“I know you,” she said, blinking. “I mean, I don’t really know you, but you’re with the man who – who...” Absent a polite way to express it, she fell silent.

“Who reverses the chair he’s tied into. Reverses it all day, pushing with his feet, and when he eventually comes up against a wall, tries to throw himself out of it and on to the floor. That’s my dad. Your mother is the very elegant lady who fell and broke her wrist, right?”

A third woman came charging out through the automatic glass door, halting just in time to avoid collision. Seeing the tear-stains, she asked if the woman with the white-blonde hair was all right.

“Stupid question, I know,” she added. “None of us are all right. Because none of them are all right. Have to tell you, I sit there every second day for an hour and I ask Mum questions and get mixed allsorts by way of answers. All kinds of everything. Now and then, even, a complete sentence. In the sense that it has a beginning, middle and end. Subject, predicate, object. No lucid content, but good structure. Never mind the meaning, feel the syntax. I’m sorry. I’m a teacher.”

The three exchanged names. The woman who had been crying inserted the edge of a folded tissue under her eyes to remove damp while not disturbing her mascara. The Lexus driver, who wore no make up, watched this with fascination.

“D’you know when we realised about my mother?” the blonde woman asked nobody in particular. “The day of my father’s funeral. First time we copped, not just that she had Alzheimer's, but how far it had gone. He had covered for her so well. Jesus, he had covered so well. It probably killed him, the effort.”

She began to cry all over again, noisily, this time, in hiccupping sobs. Abandoning care for her make-up, she mopped her eyes so carelessly that black mascara streaks turned her into a panda. The teacher searched in her big handbag and brought out a packet of babywipes. When the crying passed the raucous stage, she cleaned the other woman up with impersonal efficiency.

“I’m sorry,” the crying woman said. “Sure, we’re all in the same boat.”

The three of them stood there in silence, thinking about this. The Lexus driver commented that at least the nursing home was well-run. And Mary Harney’s Fair Deal, once you got through the paperwork and the waiting, helped, too. The teacher said that while she wouldn’t agree with Harney’s policies generally, that was true. The Lexus driver said she’d recently received a form from HIQA asking about the nursing home’s performance.

“Did you get it? I wanted to write back and say ‘Why are you looking for something to be wrong? Why are you almost inviting whinges from me? Why aren’t you trying to catch people doing things right, so it can be copied elsewhere? Why don’t you just watch the lovely nurse’s assistants as they follow my father’s chair around that bloody building, making sure he doesn’t break anybody’s leg or overturn furniture while he reverses, always sunshiny and nice to him when they must want to hit him for causing such hassle. I mean, every other resident hates him. Well, maybe not your mother,” she conceded.

“Because she’s probably – I don’t mean to hurt you, you understand what I mean – she’s probably a bit too detached from reality to register much about him.”

“My mother, on the other hand, would choke him,” the teacher said.

“But then, she’d choke everybody because she thinks nobody in there matches her for social status. She’s gone through three phases. First, forgetfulness. Second, blind screaming rage and irrationality. Third, Lady Bracknell. The screaming rage was out of character, but the Lady Bracknell attitude – neither me nor my twin sister ever saw a hint of that until six weeks ago, and now it’s like she’s at a constant garden party attended by the Queen. Except that she can’t hear anything, can’t answer a simple question, insists on getting the paper every day but can’t read it, and guards it like it was that thing Naomi Campbell got. A blood diamond. Anybody who touches her unread paper provokes screams and arm-flailing. I don’t pray much, but I have to tell you, I pray every day that she dies soon.”

Each of the others nodded: me, too. They shrugged, acknowledging without words that they couldn’t believe what they had just agreed with and that they couldn’t have come to the agreement in any other context.

“My mother’s already dead,” the platinum-haired woman said, bleakly. “She died more than a year ago. That’s not her, in there. And when death officially happens, the awful thing is that all any of us are going to remember is this half-life, not the way she used to be.”

The Lexus driver thought about telling them how she’d gone to a clinical psychologist to have her own memory tested, because she was convinced she could see in herself the early signs that had accompanied her father’s decline.

She had stopped doing crosswords and one of her sons had remarked that Grandad had lost interest in crosswords before he went into the nursing home. She had wanted to hit him for voicing her own terror as casually as if it was a weather forecast.

They talked of nurses they liked and didn’t like. Of how more women visited than men. Of the heroism of staff who chose to work with people suffering dementia and gave every impression of enjoying it. Of the guilt each felt over submitting to the inevitable. Of the indignities of incontinence and the added complications of deafness. Of how cleverly the place was laid out and painted, so that residents with some small bit of independence could find the toilets easily.

The teacher mentioned the shock of seeing, in one of the toilets, a neatly typed reminder list, specifying which kind of sanitary protection named residents wore.

“Made perfect sense to have it there,” she admitted. “I just never thought my mother would ever be on a list like that.”

It will get better, they agreed as they headed to their cars. Each thinking that sometimes, only a lie will keep you afloat.