When Jan Ehtash woke up, he immediately panicked. Lying on her back, paralyzed from the neck down, she was terrified of what was happening.
“I thought, ‘I’ve been kidnapped, I’m here now, I can’t move, I can’t speak, and there are all these strange people walking around with big things like a helmet,'” she says.
Believing her captors were about to start experimenting on her, the 58-year-old tried to figure out how to escape. But all she could do was lie still, surrounded by a strange machine that continually beeped and hummed.
It was at this point that she realized that machines had their own language.
“I thought the machines were communicating,” she says. “It was very scary.”
But Jan hadn’t been kidnapped and machines weren’t talking to each other. In fact, she was in the ICU (intensive care unit) ward of a London hospital, having spent five weeks in a coma battling the Covid-19 that nearly killed her.
It was January 2021. His “kidnappers” were actually the doctors and nurses who saved his life.
His paralysis was only temporary and his hallucinations were caused by a surprisingly common phenomenon called “intensive care delirium”, or ICU delirium.
‘Profound loss of control’
“For the patient, being admitted to intensive care is like being trapped,” explains Larry Mulleague, a physician and ICU consultant who treated Jan at St. Helier in London.
“There is a profound loss of control, as well as fear, great difficulty in being understood and physical and emotional suffering.”
According to Mulleague, ICU delirium affects more than half of the hospital’s patients, but the experiences are rarely the same.
“Some of the ‘luckiest’ can imagine themselves as a character in a book like Alice in Wonderlandbut more often the hallucinations are very frightening with themes of kidnapping, torture, drowning and espionage,” he says.
Jan’s journey into this strange world began several weeks earlier when she contracted the coronavirus.
Struggling for breath, she was admitted to St. Helier taking only a bag with her, convinced that she would be discharged the next day.
Then a doctor said, “We can’t promise you’ll come out of this,” and asked to call the family. It was Boxing Day (a holiday celebrated the day after Christmas in the UK).
“I called my husband and kids, which was awful,” she says. “My youngest daughter screamed into the phone and said, ‘Mom, I can’t lose you. You have to fight this.’
Almost two years later, Jan still thinks about that moment. “How can I tell my kids that their mother won’t be around? I couldn’t even give them a hug. It was a phone call.”
Jan was sedated and intubated.
“She was probably one of the most critical patients we’ve had,” explains Jessica Gregory, who works in the ICU at St. Helier. “We were extremely concerned that she would survive.”
It took five weeks for Jan to wake up to her strange visions.
She was eventually released from the hospital with a bag of medication and disturbing footage from her time in a coma.
She remembers one of her daughters talking to her and another close to her chest. She remembers being wrapped in a sheet and turned face down while being intubated.
All this happened, but it was difficult to distinguish what was real.
She also found it difficult to adjust to home life afterwards. For a while, Jan could only sleep if she watched videos of the same intensive care machines on YouTube.
“It was a comfort… I needed to hear those machines for some reason,” says Jan.
Rhyan Fuller, 40, had a similar experience. He was admitted for the same reason – a life-threatening covid infection.
He also hadn’t realized how close to death he was. But the business analyst’s hallucinations were more prosaic.
“It was random stuff, like talking to people while I was outside by the river. And I thought, ‘well, there’s no river in St. Helier,'” he says.
Rhyan also believed that his laptop had been taken away by hospital staff.
“That’s a very strange place to be while you’re trying to recover,” he says.
According to research, aspects such as illness, age, medications, noise levels and insomnia contribute to ICU delirium. The study also addresses the causes and how the problem can be treated and prevented.
“There are tools that we offer in our hospitals – a window and a clock with a 24-hour display so patients can orient themselves during the day and night, as well as quieter machines,” explains Larry Mulleague.
“We also provide physical therapy, tell patients where they are, provide glasses and hearing aids, and play the patient’s favorite music. Hearing a familiar voice or feeling the touch of family members also helps,” he says.
He adds on the importance of offering support to patients even after hospital discharge, with support groups and specialized psychologists available.
“Fortunately, when we see them in our follow-up clinic three months after discharge, the rawness of those memories and the emotions they provoke are gone. But explaining how common these thoughts are for survivors is often validation that they and their families need,” he says.
To help with their recovery, Jan and Rhyan are part of a support group for those who have experienced delirium in the ICU, based at St. Helier.
In a small room, patients discuss their encounters with death and their hallucinations.
One woman explains how she thought she was magnetized in her bed. Another tells that, during her coma, she dreamed that she was seeing an American detective.
Most participants recovered physically.
These sessions aim to help with psychological recovery from intensive care.
“I went to the first group and they answered every question I had,” says Jan.
“You think, ‘Am I normal? Am I going crazy?’ But then you hear other people share similar experiences and you realize, ‘Oh my God, it’s not just me’.”
Maria Carroll, an ICU nurse, believes patients find the process “very beneficial”.
Doctors can understand their journey to some extent, she says, “but we don’t put ourselves in their shoes. We don’t understand how they understand and they have something in common that they won’t have in common with anyone else.”
Rhyan agrees with the benefits of learning from other people’s experiences.
“There will be people who can say things that will make this whole journey a little easier to digest,” he says.
– This text was published at https://www.bbc.com/portuguese/geral-63788292