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Karen Bryer knows about the terror of delirium. She's lived it.
The long-time banking executive and financial consultant experienced it in 2014 while undergoing a series of complex procedures at Toronto General and Toronto Western Hospitals, which ultimately culminated in a successful heart transplant.
During a 10-day period that saw her put in and out of sedation, Karen recalls a range of emotions, from the sensation of being relaxed and comfortable in "a warm, dark place," to a growing fear and panic that led to her feeling "I can't go on, I want to die." It was an emotional and mental roller coaster.
"I think it's highly likely that no one knew what I was experiencing," Karen says.
70 per cent occurrence in ICU
She's telling her story to mark the annual Delirium Awareness Week at UHN, which aims to increase the understanding and education of the serious but usually temporary disturbance in mental abilities that results in patients experiencing confusion and reduced comprehension of their environment.
It's estimated that delirium will occur in one in five patients admitted to hospital, and up to 70 per cent of those in intensive care units. Delirium is associated with physical and psychological impacts on patients, including death. Screening and prevention can reduce instances of it and better manage any occurrences.
Karen, a life-long athlete, was regularly cycling and racing sailboats before she became suddenly ill in the fall of 2013. During her first stay in hospital, which lasted a couple of months, she does not recall having any delirium.
'How do they know I'm here?'
During her next visit, a few months later, Karen was diagnosed with giant cell myocarditis, a rare cardiovascular disorder. It was during this hospital stay, after undergoing emergency surgery, that she experienced delirium.
Karen recalls being relaxed and comfortable and seeing a tiny dot of light in the corner. It grew closer and then a voice called her name sharply, prompting her to wonder "how do they know I'm here?"
The voice grew more demanding, her fear rose and the light became brighter until it eventually became unbearable. As the light subsided, Karen felt like she was being grabbed by the ankles and spun around. She became dizzy and nauseous.
Terror level rises
This sequence repeated several times, her terror level rising once the tiny dot appeared.
"They want to kill me," Karen recalls thinking. She believed this was how the rest of her life would be.
"I can't go on like this," Karen remembers concluding. "I want to die."
Eventually, Karen opened her eyes. She saw her sister and struggled to explain herself, eventually writing her terrified thoughts down on a clipboard. Her sister begged her not to die, prompting Karen to write down that she really didn't want to die. Finally, the torture stopped.
When asked what advice she would offer to healthcare providers, other patients and caregivers, Karen underscores the importance of having family close because familiar voices ease the fear and anxiety.
"Presence of family is absolutely critical," says Karen, who is a UHN Patient Partner in Care. "Family knows you, you know them."