The Japan Times - Ukrainian wife battles blackouts to keep terminally ill husband alive

Bedridden, completely paralysed and connected 24/7 to a yellow-and-blue life support machine, her husband Anatoli Kuchynsky suffers amyotrophic lateral sclerosis (ALS) -- an incurable degenerative nerve disease that kills most people within five years of diagnosis.

Russia's incessant strikes on Ukraine's energy grid over the last month have made their fight against the condition even more perilous.

The missile and drone barrages have knocked heating and power to millions as temperatures hit minus 20C.

Ukraine has been forced to ration electricity through rolling nationwide blackouts.

Next to his medication, nutrition for a feeding tube and inflatable sink to wash her husband's head, Grygorenko kept a daily schedule of the planned outages in Chernigiv, north of Kyiv.

They can drag on for up to nine hours a day.

During precious time when the mains are online, "the batteries don't have time to charge," Grygorenko, 57, told AFP.

Lying under a crisp, rose-pattern duvet, Kuchynsky can only move his eyes.

After a career in Ukraine's SBU security service, the 62-year-old now gasps for every breath, is unable to move, swallow or talk and requires round-the-clock care.

His cheeks sunken and sallow, he barely resembled the man in a medal-festooned military uniform glancing from a framed picture on a nearby shelf.

- 'War teaches you everything' -

Amid the frequent blackouts, Grygorenko is planning for the worst.

"There's a house nearby where they don't turn off the power. So I've already made arrangements with them that if, God forbid, something happens, I'll run there to charge the battery."

As she spoke, the ventilator was humming steadily in a corner of the room.

Against the wall, parallel to Kuchynsky's bed, was the click-clack sofa bed where Grygorenko keeps watch.

"We sleep top and tail. I look at him, he looks at me."

She sets three alarms every night -- 1:00, 4:00 and 6:00 -- and wakes every time the power clicks on or off to plug in the machine or re-charge the batteries.

"War teaches you everything."

She has stocked up on nutrition, disinfectants to clean the tubes keeping Kuchynsky alive, medication, and keeps a 100-litre barrel of water on the balcony.

The intricate planning is a lesson from when Russia invaded in February 2022.

Moscow's troops encircled Chernigiv and the power was cut -- leaving Kuchynsky with only two hours of battery for his life support machine.

Grygorenko "begged" a military ambulance to take him to the nearest hospital.

"At that time I didn't even know what a power bank was," she added with a sheepish smile.

"Some people say: 'send him to a specialised facility where there are professionals to care for him'. No professional will give this kind of love, this kind of care."

- 'A little cognac' -

In their cosy second-floor apartment in a Soviet-era building, photos of a younger Kuchynsky show him fishing and crouching in the middle of a bright yellow rapeseed field.

The 2015 diagnosis of ALS -- the same disease that afflicted Stephen Hawking -- hit Kuchynsky hard.

"He didn't want to live," Grygorenko said, recalling how she got rid of his hunting rifle, fearing he would use it on himself.

"He really loved fishing, hunting. And we never had a weekend without guests. Right, Tolya?" she said, looking over at her husband, who she had married only a few years earlier.

Unable to even nod his head, he communicates through an alphabet board.

Grygorenko runs her finger along letters on a laminated sheet of paper, waiting for his eyes to flicker at the right one.

Upbeat and cheerful, she said she takes her energy from her bedridden husband, and manages to leave the flat about twice a week -- to "get a haircut, a manicure. I'm a woman, after all".

Her main desire now is to get through the winter and for them both to outlast the Russian invasion, now about to drag into its fifth year.

"We live. I don't want to say we're surviving. We live. I want to wait it out. I tell all his friends that we'll live to see victory, the end of the war," she said.

"So everyone can come to us. We'll set a big table. The doctor allowed it. Says he can have a little cognac."

T.Kobayashi--JT