I stood at the nurses station, swaying at bit, from the unsteadiness that started in the ICU, and watched a nurse write my request in a big blue binder. “What is that”, I asked.
“It’s your binder.”
“What’s in it?”, I asked.
He used the fingers of his right hand to ruffle the pages of the binder, “It’s the history of your stay here. Everything that happened to you, is written in here.”
“Can I read it?”, I asked.
“You don’t want to read this.”, he replied, which is a strange response since I just asked if I could read it.
“No I want to read it”, I said.
He continued trying to talk me out of reading it, but I knew the law and said “It’s my file, and the law says I can read anything that’s about me.”
“You’ll have to fill out a form to get a copy.”
“Give me the form.”
“I’ll get it to you later”.
I wobbled back to my room, still feeling extremely unsteady, as if I might fall over at any minute.
He never did bring me a form. Everyday I went to the nurses station and asked for a form, and everyday I was given a delay tactic.
When I got home from the hospital, I complained to one of my doctors about not being able to read my file, and he told me what website to go to get a form. I filled out the form, paid the money, and got the file.
I wanted that file, because I did not know what happened to me. I had a vague idea, but not enough to satisfy my questions that nobody was answering.
My family would probably have answered the questions by that point, but our area of the world had a cold front at that time, preventing most cars from starting and many roads to be closed.
What should be told to an ICU patient and when? That was a question asked by Dr. Megan Hosey that said “Family members of ICU patients commonly ask me “What should I tell them about the ICU and when?”, before following up with a tweet that asked ICU survivors what they thought. (I would link the tweets here, but I don’t know how.)
Thank you Dr. Hosey for the idea and allowing me to respond to your question in a blog post.
I had no idea what happened? I had no memory of the days before I entered the ICU and my memories of being in the ICU were delirium filled.
Before I woke from sedation I knew on some level that I was in the hospital, but I didn’t know why. At some point my brother told me I had started smoking and it was my fault I was in the ICU. That wasn’t true. I’ve never smoked in my life.
While your loved one is under sedation talk to them and tell them:
1.) Where they are
2.) Why they are there
3.) Why they can’t move (bed restraints, sedation, ect.) Why they are in bed restraints and or under sedation. Don’t let them think it’s because they are a bad person, somebody is trying to kill them or anything else like that.
4.) That they might have delirium what they see might not be real. (I saw all sorts of things, that you can read about in the blog – both written now and written in the future).
5.) Who is visiting
6.) That you love them.
When they wake up from sedation:
7.) Repeat the information above, because it might not be remembered from one day to the next. I seemed to have lost my object permanence when I was in the ICU and for months afterwards. If something wasn’t right in front of me I simply didn’t think about it. I brushed my teeth, if I saw my toothbrush in the morning. I had to keep my pills on the table where I sat or I’d forget to take them all day. I ate only when I was hungry, because it was hunger that reminded me I needed to eat. Because things are so easily forgotten when a person is extremely sick, things will need to be repeated.
8.) The time and date.
Time does a strange little thing in the ICU. It’s hard to understand, but it bends and becomes non-existent. At one time my brother was there, only he was a child, and his son was standing beside him, the same age as he was. Without clocks or calendars time becomes even more confusing that it already is. Many ICUs don’t have windows and the lights are on all day and all night long, making any way tracking time difficult. Help your loved one to orientate to time, by telling them the time and date.
9.) Answer any questions about why they are there.
After the ICU but in the ward.
This is where I wanted more information, and started asking for my file. I still had a bit of delirium but I knew that the clock wasn’t really sliding off the wall. It was just because I was seeing things.
10.) Tell the person what happened.
11.) Answer all the questions asked.
12.) Tell them about delirium, and that what they are seeing and hearing might not be real. They don’t need to be afraid of it either.
On my first night in the ward, I called a nurse in and asked “Are there fire works on the ceiling, or am I developing schizophrenia”.
She asked “Why do you think you have schizophrenia?”
“Well because I’m seeing fireworks on the ceiling, and I don’t think medicare pays for such fancy light shows in the hospital. That would be a waste of healthcare funding.”
“No,” she said, “the health region does not pay for light shows in the hospital, but you don’t have schizophrenia either. You have been through a very traumatic event and the brains way of dealing with that is to see and hear things that aren’t there.”
“Do you want me to get some medicine to make it go away.”
Still watching the light show I said “no, I’ll just enjoy my own private fireworks shows. As long as I’m not getting something else wrong with me. I didn’t want to deal with getting schizophrenia that’s all.”’
The patient across the hall laughed, and the nurse smiled before saying “ok, enjoy the show”, and I did, that is until the not so nice stuff started happening.
Once I knew that I was seeing things, and was not developing a mental illness, the delirium was easier to deal with.
I do wish the nurse had called it delirium. It wasn’t until I got home and read tweets on twitter, that I realized it was delirium.
After they are home:
I am guilty of this as well. Before I got sick, my mother was in the hospital for 100 days because of a major brain illness. She remembered nothing about what happened when she was sick. When she got home from the hospital she asked questions about her illness almost everyday. Many times it was the same questions.
Although I answered her questions and talked about it when she wanted to talk, I was frustrated, and I don’t think I did as well as I could have.
When I got home from the hospital, I understood and felt a tremendous amount of guilt for not being as patient as I should have.
Thankfully she was more patient than I was, and answered my questions again and again.
It’s hard not knowing what happened, why it happened, but also having this false delirium induced memory of what happened.
13.) Allow the person to discuss that delirium. It may not have happened to you, but it happened to your loved on, and it was scary, and horrifying. It’s a trauma in an of itself, and it can cause PTSD. I was diagnosed with PTSD from my ICU experience. Sometimes calling it delirium seems like a lie and a threat to me, because to me it really happened, and to me it still hurts a lot.
14.) Help your loved one get their own file if they want it, and allow them to read it at their own pace.
15.) Show them pictures if you took any.
My mother took pictures, and I copied them onto my phone. I still look at the often. At first I looked at them almost everyday.
16.) Tell your loved ones, months and years later, that it’s ok to still think about it, wonder about it and ask questions about it. Don’t expect your loved one to be over it. To them it is not in the past. It happened. I think about it everyday and if I allow myself, I feel the pain of it everyday. Things have moved on with my family, and I feel the need to move on with them, but it’s not something I’ve gotten over. I still want to talk about it, write about it and deal with it, but I also feel selfish for wanting to.
Thank you for reading this. If you want to know more, you can read more of this blog, or follow me on twitter for updates. If want to be mentioned in my blog twitter updates, let me know.
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