Corinne Vien

He'd spend time in different rehab centers and even spend time at home. Throughout this time, his wife continued to advocate for him.

He'd spend time in different rehab centers and even spend time at home. Throughout this time, his wife continued to advocate for him.

I have to say, I saw a lot of myself in Ellen in this moment. Your husband is dying in front of you. He's given six months to live, many of which he will be in a coma. You're trying your best to cope and to find any treatment to slow down time. And then you have to witness people stride into the hospital room for an hour or so and so clearly not take Jake's safety seriously. Hell no.

I have to say, I saw a lot of myself in Ellen in this moment. Your husband is dying in front of you. He's given six months to live, many of which he will be in a coma. You're trying your best to cope and to find any treatment to slow down time. And then you have to witness people stride into the hospital room for an hour or so and so clearly not take Jake's safety seriously. Hell no.

I think I would likely ban people, too. It had only been a month since Jake's diagnosis, and he was still declining rapidly. His speech was slurred, his body began contorting, and he was unable to walk to the bathroom without two people on either side of him. But Jake continued to work diligently, giving it his all in his daily physical therapy and speech therapy sessions.

I think I would likely ban people, too. It had only been a month since Jake's diagnosis, and he was still declining rapidly. His speech was slurred, his body began contorting, and he was unable to walk to the bathroom without two people on either side of him. But Jake continued to work diligently, giving it his all in his daily physical therapy and speech therapy sessions.

Despite the hours of daily rehab, Jake didn't qualify with his insurance to stay at Fairlawn. He needed to demonstrate that he was making progress. But in Jake's case, progress did not mean improvement. Rather, he worked to slow the progression of the disease to delay the inevitable.

Despite the hours of daily rehab, Jake didn't qualify with his insurance to stay at Fairlawn. He needed to demonstrate that he was making progress. But in Jake's case, progress did not mean improvement. Rather, he worked to slow the progression of the disease to delay the inevitable.

When given the option between moving to a nursing facility or going into at-home care, Jake and his wife decided that they should have him transferred to a nursing facility. In retrospect, if this disease didn't kill Jake, some of the things that could happen at these facilities just might.

When given the option between moving to a nursing facility or going into at-home care, Jake and his wife decided that they should have him transferred to a nursing facility. In retrospect, if this disease didn't kill Jake, some of the things that could happen at these facilities just might.

An ambulance did arrive and it transported Jake to a new hospital. This time he was at UMass Memorial Medical Center.

An ambulance did arrive and it transported Jake to a new hospital. This time he was at UMass Memorial Medical Center.

Makes sense. It was likely in this moment that his wife lost the trust of these types of medical facilities because the next move that they made was to transfer Jake home. Medical staff would come and they would aid in Jake's care, but really his wife and his dad were his primary caretakers, with a lot of the weight landing on Ellen's shoulders.

Makes sense. It was likely in this moment that his wife lost the trust of these types of medical facilities because the next move that they made was to transfer Jake home. Medical staff would come and they would aid in Jake's care, but really his wife and his dad were his primary caretakers, with a lot of the weight landing on Ellen's shoulders.

A terribly difficult responsibility to take on, but at least she would have eyes on Jake and know that he was safe.

A terribly difficult responsibility to take on, but at least she would have eyes on Jake and know that he was safe.

Right, being a caretaker is too much.

Right, being a caretaker is too much.

So at this point, Jake was beginning to have difficulty swallowing. His water had to be thickened to prevent aspiration. And when Jake tells me this, he grimaces while remembering the thick water, describing the consistency as somewhere between honey and rubber. He also had to take about 50 medications, and preparing his medications and his food took multiple hours each day.

So at this point, Jake was beginning to have difficulty swallowing. His water had to be thickened to prevent aspiration. And when Jake tells me this, he grimaces while remembering the thick water, describing the consistency as somewhere between honey and rubber. He also had to take about 50 medications, and preparing his medications and his food took multiple hours each day.