ALS has robbed Sean Tagert of the ability to speak or even breathe on his own, but the Powell River father wants to live as long as possible to see his young son grow up. That’s why the very fact he’s considering physician-assisted death is so frustrating and painful to him.

Selecting individual letters from a massive monitor with a curser guided by his eye movements, Tagert wrote to CTV News Vancouver about “watching my son's life pass by while people in positions do nothing to help" with the kind of funding that would allow him to stay at home rather than move to an assisted living facility.

"You just don't expect the massive undertaking it turns into as the disease progresses,” said his mother Patricia Mennittee. “It takes everything -- everything but the mind. So he suffers loss upon loss but is keenly aware of all of it."

Often described as “living in a glass coffin,” the motor-neuron disease has deteriorated his physical functions over the years and Tagert has become fully quadriplegic. He now lives in his mother’s Powell River home. Vancouver Coastal Health provides him funding for 20 hours of in-home support from staffers who functions as nurse, respiratory therapist, housekeeper and companion. As recently as this fall he’d been covered only 15 hours a day.

Tagert has had to stretch that money to cover 24 hours’ worth of supervision, which he says lowers the hourly wage to a point it’s hard to attract qualified support in a community as small as Powell River. Needing round-the-clock care to move him and clear saliva from his breathing tubes every 30 to 60 minutes, Tagert’s family has been picking up the slack.

“The government’s [CSIL home support funding] is a generous program, but ALS is so catastrophic,” said Mennittee. “There is no denying this is an illness that requires 24-hours a day of care and we've done our best as a family to rise to those needs but we're becoming exhausted.”

Tagert’s family physician, Dr. Stephen Burns, has advocated for the 40-year-old to get the last few hours of funding in order to keep him near his family and able to spend time with his 11-year-old son in a home setting, rather than an institutional care facility.

"I think he's an incredibly brave guy who remains optimistic and hopeful. The circumstances he finds himself in, I think there's few of us who can endure what he's endured,” he said. “I think what he's been able to do on a very limited budge it provide himself with the best quality of living that could be obtained with his condition.”

Burns also believes the cost to the healthcare system wouldn’t be much different from a supervised care facility.

When CTV News attended Tagert’s home, he was listening to Latin music and surfing the internet, enjoying text conversations with other amyotrophic lateral sclerosis patients around the world on a massive monitor. It’s a setup he’s unlikely to maintain in an institutionalized setting.

“Steve Gleason is a former NFL star in the U.S. with ALS, he has some great quotes,” wrote Tagert. “One of my favorites is ‘until there is a cure, technology is the cure.’ Essentially ALS is a death sentence if you choose not to utilize technology.”

When asked for an on camera interview about Tagert’s care and funding circumstances, Vancouver Coastal Health refused and would only send an email statement.

“Vancouver Coastal Health understands how difficult and stressful it is for our clients and their families when a loved one has a long-term deteriorating medical condition,” it said. “We work with clients and their families—and are willing to work with this client—to help maximize the home-support funding they receive.”

It suggests hiring live-in caregivers in lieu of rent and “identifying the appropriate skill level and wages for staff,” but also suggests 24/7 residential care is an option. Without advanced care centres in Powell River, Tagert would have to move to the George Pearson Centre in Vancouver – away from his family and the home he’s been able to spend private, quality time with his son, who visits him on weekends.

"If it comes down to Pearson I've opted for medically-assisted death, which I will broadcast live in protest of the VCH lack of properly caring for severely disabled people," wrote Tagert.

It’s a last resort, but one he’s seriously considering in desperation, wearied by sleepless nights spent in pain with a rotating roster of new staff underprepared to address his specialized needs.

“So left with the options of either waiting for a day that I have no staff available and choking to death, or being institutionalized at George Pearson (the ‘jail for quads’) and dying a slow tortuous death, I’m going to pursue medically assisted death,” he wrote on a March 19 Facebook post. “It will wreck my son, but better than him walking in on a blue contorted corpse one day.”