I have read multiple studies of this phenomenon, but this one puts it most succinctly. I won’t summarize it here, but hopefully it’ll shed some light on life after someone you love is in ICU. Especially if you take part in life or death decisions for that person.
I have suffered from varying levels of anxiety since my mother was admitted to the ICU in February 2014. The whole story of her time there is not for today, but I am sure it is coming at some point. I don’t think I am ready to write about all of the details yet. Some of it may never come out of me, aside from the journal I kept while she was in the hospital. I was so desperate to talk to her while she was in a coma, that the only thing I could think to do was to write to her. All of the things I wanted to say that she couldn’t answer. There are times before she woke up from her coma and the seizure that the flu put her in to, that I knew she could hear me. After more than a month, she woke up and became responsive (miraculously she was fully herself neurologically speaking.) We could talk to her, but that was rare, and her tracheotomy made it impossible for her to speak. I never heard her voice again after my youngest daughter’s first birthday. My parents had to leave my baby’s birthday party to make their first of two trips to the Emergency Room, because my mom was having severe trouble breathing. The first visit was for bronchitis and acute asthma. She was tested for the flu, but she didn’t have it. She was back in the ER four days later, this time with H1N1. I think she contracted it during her first ER visit. She was transferred to the ICU, and almost died that first day, as her lungs and heart failed. Her liver and her kidneys followed closely behind. In the blink of an eye everything was different. So I developed anxiety that day. There was no other option, really.
There was an instance at 4 am, on her third day in ICU, that my mom’s heart decided to try to stop beating. Then it beat at about 200 beats per minute. It shot back and forth like this repeatedly. One of the nurses we would eventually grow very close to made her first introduction to my dad and I by coming in the the pitch black family room, where my dad and I were sleeping, to tell us “we’re having an issue with her heart.” It took me a second to realize where I was. All I could see was a nurse in silhouette against the bright lights of the hospital hallway behind her. We spent some amount of time in my mom’s room, standing back, watching about nine nurses try to understand what was happening, bracing themselves to resuscitate her if need be. I felt like a shell of a person watching helplessly, while a screen told me how close my mother’s body was to giving up. It seemed to last for ages. In reality I think it was about five minutes. Maybe it was longer. I really don’t know. Then just like that, it all calmed down. I stood dazed while one of the other nurses tried to explain what had just happened, in a way that made it understandable to us. Just like that, hers was a steady beating heart again. It was one of the first hideous scars we received.
I remember how my hands used to shake uncontrollably at times. Sometimes it was because I was arguing with a nurse, or because one of them said something that made me hopeful, which you become desperate for in a way I can only imagine thirst in the middle of the desert must resemble. The shaking was incredibly noticeable, and I at times caught glimpses of others at the hospital notice it. It was embarrassing, but trying to make it stop actually hurt, so I just accepted it. I’m not sure when the shaking stopped, but it happened before my mom passed away. I think it just eventually took more to shake my foundation, and my hands, than it did in the beginning.
The study linked above, and others I have read, typically have studied families who had a loved one in ICU for less than a week. My mom was there for 101 days before she died. I don’t think that means my trauma was worse than those families studied. I just know that the ups and downs, hopes and disappointments, add up in that much time. They make a lasting impact. I still jump when my phone rings. I still think text messages are from my dad, sending me the latest update on my mom’s vital signs. Even with over a year having passed since her death, when you live every minute of every day on edge, you spend literally every day in an ICU room, watching others come and go and wondering when it will be your mom’s turn (and if leaving means she’ll come home) and sleep only once you stay awake long enough to not be able to keep your eyes open anymore, it becomes a way of life. It is hard to let go of.