“She was asleep, and– I was– there was this horrible noise… I didn’t know what to do. You didn’t answer– I called Vicky, she’s in there now…” It comes out as a tangled mess of panic, his body fighting between the stutter of his words and the breath he so desperately needs to take. “There’s all this equipment and– and I don’t know what it does… I haven’t seen it before.”
I know he’s angry at me–at least he thinks he is–but it doesn’t stop me. I pull him in by the nape of his neck, holding him in place so he can hide from the truth long enough to take a breath. Jules instantly pushes his fists against me, fighting the comfort I know he needs.
“Let go of me.”
“No.”
“Zander…”
“I said no.”
His resistance doesn’t last; his body gives in, heaving through the sobs, clawing their way out. Fingers tighten against my chest as he wrings and twists the fabric in anguish. Every breath is desperate and rough, shuddering with the force of his despair.
“Shhh,I’ve got you,” I repeat into his curls. Tears leak out, but I don’t pay them any attention; I just let them fall as my hand massages the tension in his neck. There’s an unfamiliar noise coming from the living room where Theresa is set up, it sounds mechanical and cold, completely out of place.
Jules squirms beneath me, pulling back weakly as he sniffles–
“I’m sorry.”
“We don’t apologise for our feelings, remember?” I press my lips to hisforehead.
“I didn’t know what was happening, the noises she was making… and the–”
“Shh,it’s okay, you don’t have to explain.” He lets out a shaky sigh as his head rests against my chest again.
“I haven’t read anything about that.”
“I’ll speak to Vicky, then we’ll both know, okay?” My fingers coil around his curls, holding him through the remains of his sorrow.
Vicky had arrived quickly once Jules called. Turns out she technically wasn’t on shift this evening, but when Jules’ panicked voice came through, she didn’t hesitate to get in the car and make her way over. She had been bringing stuff with her during her visits over the last few weeks, stuff that Theresa will eventually need. Once she had got her settled, she sat us both down in the kitchen, made us a hot drink, and explained what had happened.
Long story short– her lungs are failing. Well, technically, her brain is failing her lungs. The neurons responsible for sending signals to the muscles allowing her to breathe are dying, which in turn meansshe’sdying.
“So this is the end?” Jules asks.
“It’s the start of the end, yes.” Vicky gives his arm a reassuring squeeze. She’s good for Jules; always honest and thorough with her explanations
“How long?”
“Jules…” I don’t know if the information will be good for him. His brain works differently; he likes facts and definitive answers. He doesn’t recognise the termsmaybeorunsure.It’s either yes or no. Right or wrong. Black or white.
“No, I need to know. Vicky?” He pushes on.
“I would say that with her deterioration and its progression, we’re in the final stages. Her mobility is gone, as is her speech. It’s easier if you imagine the brain like a supermarket and ALS as the night staff. First, they slow the escalators before switching them off. Then they turn down the radio until it’s impossible to hear, before they flick off the lights, one at a time.”
“But they don’t turn off the electrics altogether, right?”
“Are you asking if her brain will stay active? The answer varies, patient to patient. Some are aware and retain their understanding right up until the very end, whereas others show signs of cognitive changes.”
“What about Mom?”
“I’d say she’s still very aware of her surroundings. I can see the happiness in her eyes when you’re both by her side.” Jules chokes back a sob, allowing himself a moment before straightening once again.
“So, how long?”
“Weeks, maybe a couple. I’ve looked at her records, and she has requested that we not perform any kind of invasive respiratory intervention.”
“Like?”
