An ALS patient’s dilemma: End his own life, or die slowly of the disease?

The veteran Gallegos hired, Kristine Kettlewell, fed him breakfast and lunch, helped him brush his teeth, ran errands, assisted him with paperwork. On good days, they went out for lunch or to shop. When Miller returned home, she fed him dinner and got him ready for bed. She often woke in the middle of the night to get him a drink of water or adjust his blanket. He soon began sleeping in his wheelchair.

They’d been together since 1997 without getting married; each had children or stepchildren from prior marriages. With ALS closing in, they decided to make it official. In April 2018, they were wed in their living room by a chaplain from Gallegos’ palliative-care program, with only their dog, a bichon frise named Yaleb, beside them.

At the same time, Gallegos began preparing Miller for life without him. He wrote out instructions on whom to call, what accounts to change, what bills to pay.

The disease tested their relationship: Miller, with little time to relax, sometimes lost patience with Gallegos, and he hated feeling like a burden. But it also brought them closer. He learned to savor certain moments ─ a deep conversation, a blue sky, a tasty meal ─ that reminded him how wonderful it was to be alive and to love. He told Miller he was sad that their time together was nearly over.

“There are times when we’ll just cry together,” Miller, 58, said.

‘You have a choice’

The worsening symptoms forced Gallegos to think more seriously about medical aid in dying. He watched members of his ALS support group endure excruciating deaths from a disease that typically ends with respiratory failure but can also cause pneumonia, malnutrition and blockages in the arteries of the lungs.

He recalled one friend “writhing and contorting, scratching, clawing, gnawing, hurting others around him, trying to escape the jaws of death.” The man refused to consider ending his own life. “You need not suffer this way,” Gallegos told him. “You have a choice.”

Gallegos decided that he, too, should have a choice.

Colorado’s law, which went into effect in December 2016, includes a rigorous process to make sure the drugs are administered voluntarily to people already facing imminent death. The law also frees patients of the legal implications of suicide: It requires that the death certificate list the underlying illness, so that there is no impact on life-insurance policies.

Following the law’s requirements, Gallegos saw two doctors who documented that he was in sound mental health, had six months to live and wasn’t being forced to seek the drugs. The process stretched through the summer of 2018.

After getting approved, Gallegos received the prescription for a combination of drugs known as DDMP last September. If he decided he wanted the drugs, all he had to do was call a pharmacy, pay $450 and have them delivered. Miller ─ who’d agreed to go along with whatever he decided ─ could then prepare the drugs and bring him the solution, but the law said he had to sip and swallow it himself.

Having the option to legally end his own life felt like an important accomplishment ─ another step in preparing for his final days. But he still did not know if he’d go through with it.

He sought advice from people he trusted, and he also looked for signs.

At one point he jokingly tied his fate to the Broncos’ mediocre season: If they kept losing, he’d do it. If they went on a winning streak, he’d hold off.

“I am still in a search,” Gallegos said in an interview at his home in November.

‘I can’t see how that presents me with dignity’

No signs arrived.

Through fall and winter, as the breathing and coughing attacks grew more frequent, Gallegos remained unable to decide whether, or when, to take the drugs.

He’d always been slightly built, and the loss of muscle made him look spectral in loose-fitting sweatpants and a fleece jacket. His speech diminished, but his intellect was as sharp as ever.

“I’m wondering how much longer I will choose to live, in recognition of the quality-of-life issue that seems to erode, evaporate, daily,” he said in early December. “It’s really a hard thing.”

His spent longer stretches on the ventilator, which delivered oxygen through a mask that covered his face. His bedtime routine with Miller, which included lifting him from the toilet, tested them both. He wondered how long he could expect her to be his caregiver.

They managed a relaxing Christmas Day, watching old movies by themselves. But by New Year’s Eve, George was asking Miller to pound him on the back to break up his chest congestion. Afraid of choking, he didn’t eat anything much thicker than yogurt. “I’m useless,” he said.

Advocates say medical aid in dying ─ known as MAID ─ gives patients more power and dignity. But he couldn’t see it. ALS would always be more powerful. And was it really more dignified to end his own life? He didn’t see it that way.

“I really feel like I’m running away from a big bad option that’s coming to kill me,” he said in mid-January.

‘The finish line of my life’

The next month, Gallegos decided to check himself into a nursing facility for five days. The goal was to have the staff help him “retrain” his bowels so he could go to the bathroom during the day, giving Miller a break.

“I feel discouraged because I know this is another indicator of things getting progressively worse for me,” he said. He paused every couple of words, eyes widening and eyebrows rising as he inhaled. “I’m moving towards the finish line of my life.”

Before he left, Miller asked him: “George, are you ready to get the meds?”

“I think I’m ready,” he told her. “I think I need to do it soon before I lose the strength.”

He decided to get the prescription filled when he returned.

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