CARMEL, N.Y. - The coronavirus pandemic has created untold trauma for millions of people around the world—both economically and medically. For the Schuttrumpf family of Carmel, the crisis has brought with it a particular set of heartbreaking challenges.
Ernst “Ernie” Schuttrumpf is 66 years old and has special needs that have required him to be institutionalized much of his adult life. He’s on the autism spectrum and family members say he has the mental capacity of a child and needs constant supervision.
Ernie had been living in a group home in Mount Kisco for several decades when, on March 2, he was diagnosed with COVID-19 and rushed to Northern Westchester Hospital. There, he was put on a ventilator and placed in the intensive care unit.
“After three weeks on the ventilator, they decided to put him under and perform a tracheotomy for a peg tube for feeding,” said Ernie’s brother, Bob Schuttrumpf. “He spent another three and a half weeks in the hospital. He was slowly on the mend and went from I.C.U. to a [regular] room.”
Schuttrumpf had high praise for the staff at Northern Westchester.
“They were all great people who truly cared for human life,” he said. “[During] the short time Ernie spent in the room at the hospital we would FaceTime daily with him, and he was responding to our voices and commands, which was very emotional and exciting.”
But after six and a half weeks at Northern Westchester Hospital, the Schuttrumpfs received a call from the doctor that nothing else that could be done there and that Ernie needed to be sent to a rehab facility. That’s when the real trouble started, the family says.
After doing some research, the Schuttrumpfs chose a rehab facility in Nanuet, N.Y. They visited regularly. Unable to go inside, they visited him from outside his bedroom window.
“The first night he was there he fell out of the bed,” Schuttrumpf said, “but apparently in rehabs, the laws restrict patients from being restrained. We were very leery at this point about keeping him there after that first night. The following day I got a call from the recreation department asking me all about my brother’s interests and things he enjoys doing to help make his stay more pleasant. That helped my emotions calm down somewhat.”
Staff at the rehab informed the family that Ernie’s recovery would take time; he needed to regain his strength.
“I asked [the doctor] when he sees him tomorrow to let me know how he’s doing. He said he only sees him once a month,” Schuttrumpf said. “I was shocked to hear that my brother, who is special needs with COVID and on a trach vent with a feeding tube, would only be seen once a month. He assured me that if I had concerns to let him know and he would address them, which is hard to do when we can’t visit!”
During his second week at the rehab, Ernie fell out of bed a second time. Staff promised the family they would put a sitter out in the hall to monitor Ernie.
“On June 2, which was three weeks into his stay there, he fell out of bed a third time and got a cut over his eye,” Schuttrumpf said. “They said the order had run out for someone to sit in the hall and no one was there to watch. Are you kidding me? At this time, I’m really getting concerned about my brother’s welfare.
“My sister was doing a window visit the day after he fell out of bed, on June 3, and told me that something was seriously wrong,” Schuttrumpf continued. “When I FaceTimed with him that afternoon, I agreed something wasn’t right—he was incoherent. I texted the doctor to express my concerns, and he told me Ernie was anemic, and he would order more blood work. That night I didn’t sleep, so I texted the doctor at 7:50 a.m. and asked if he would look at my brother. Within an hour the doctor called me to tell me that my brother needed to go to the hospital because he was anemic and his oxygen and blood levels were low.”
Ernie was brought to Montefiore Nyack Hospital. Once he was assessed in I.C.U. doctors said he was in sepsis shock and his bedsore was stage 4 with exposed bone and muscle, and he had a 105-degree fever.
The doctors also discovered that Ernie’s feeding tube wasn’t working correctly. A new tube was successfully connected during another procedure.
“Then the nurse asked me if I had a list of his medications and I said [check with] the rehab in Nanuet,” Schuttrumpf said. “She told me she called but they were kind of sketchy on the answer, so I had to give the nurse the phone number of the group home [in Mount Kisco] where he was living before all this to get the information. Can you believe that?”
With Ernie’s condition somewhat improved, he had to leave the hospital and is currently at a facility in New Jersey.
“This place is a step up from a rehab,” said Cindy Schuttrumpf, Bob’s wife and Ernie’s sister-in-law. “It’s a long-term acute care hospital or L-TACH. We are happy with it. He is still on a ventilator, and we need to get him strong to ween him off of that. He really lost 33 days in that rehab in Nanuet. It’s amazing he didn’t pass away there. If my sister-in-law hadn’t been there that day, he wouldn’t be here.”
Cindy Schuttrumpf said that Ernie has been an integral part of the family since she joined it when she married Bob, and she’s developed a close bond with him.
“He’s not my brother, he’s my brother-in-law, but we have a strong connection,” she said. “We’re very, very close. It’s amazing—when I first met him and saw all the medicine that he took I thought, ‘This guy is Superman; he has more energy than all of us.’”
Cindy spoke of Ernie’s “incredible mind.”
“If you ask what day of the week Aug. 10 is in any given year, he can tell you,” she said. “And he really loves movies and music. He loves Motown and rock ‘n’ roll from the ‘60s and ‘70s. He just loves to have fun.
“It’s very unreal,” she added. “It’s heartbreaking because he is such a big part of our lives.”
Cindy said Ernie is well aware of what is wrong with him. During the time he was in the group home in Mount Kisco, the residents were told about the coronavirus and were quarantining in their rooms.
“He was getting bored,” Cindy recalled. “I do remind him of all the people in the world who have it and tell him, you are doing really good and you have to keep fighting. I think he does understand what is happening.”
Recent tests show that Ernie is no longer positive for COVID-19. Unfortunately, the damage has been done, and he remains on the ventilator. And now Ernie’s Medicare is running out, and he will have to leave the facility in New Jersey within the next several weeks.
“The problem with that place right now is they don’t take Medicaid, and he only has three weeks left [until Medicare runs out],” she said. “I am working with the Medicare advocate but it’s not easy. We are not looking for money, we are just looking for help. He has the Rolls-Royce of Medicaid plans, but what good is it if most places won’t even take it? And on top of that, we have to find a place that accepts patients who are on ventilators. He’s a great guy and doesn’t deserve this.”