It goes too fast when you’re having fun, like at an amusement park.
It goes to slowly when you’re not having fun, like at the dentist.
It becomes completely indiscernible, when you’re under sedation. My nephew and brother seemed like they were the same age.
It becomes untrackable when you’re deprived of any form of time tracking devises.
Laying on your back, staring at the ceiling in a basement room without windows, makes time indiscernible. Combine that with delirium, illness that makes you so tired it’s hard to keep your eyes open, and ICU staff that come and go at odd hours, and the days just blend into each other.
When I wasn’t sedated, but still in the ICU I tried to keep track of time. As mentioned before I asked for paper and a pen as soon as I woke up from sedation. I tried to make a small calendar on one of those pieces of paper, and figured out the day by asking how long I had been there and when I went in there. When I thought the day changed, I marked it off on the calendar.
When I went to the ward (just the first bed that would take me), I continued with the calendar. The days were easier to follow, because the window allowed me to tell the difference between night and day.
All this could have been helped, if people told me the time, and the day, or if there was a clock on my ceiling.
The ICU is a very different place for patients than it is for staff. Being in a bed, with all those tubes and wires, and having to rely on others is different than standing beside the bed and being in control.
I remember trying to change my bed position to sit up a bit, and completely messing up the buttons on the bed. It wasn’t like a normal hospital bed. It was more like a waterbed. I wondered if a person needed a nurses degree to move the bed, and why it was so complicated.
I was rescued by a nurse that asked what I wanted to do. I whispered my reply because my voice was still very week.
With that understanding in mind, I know that somethings just simply get overlooked because the experiences are so different.
I’ve made a list of things that can make life easier for your ICU patients.
1.) Put a clock on the ceiling.
2.) Tell your patient what day it is and what time it is every time you see them. Say something like “Good Morning, it’s 10:00 am on Sunday, Jan 4”, or something like that.
3.) Tell your patients where they are. Include the name of the hospital and ward.
4.) Tell your patients why they are in the ICU.
I had no memory of going in.
I confirmed my parents storey by reading my diary entries for the days before I went into the ICU, because I had no memory. It triggered faint memories of the day before.
5.) Tell your patients who you are each and every time you see them.
If I ever knew who people were, I didn’t remember them by the time I saw them the next time. People did have name tags hanging around their necks, but they often hung so the name faced their shirts and not me. I remember one man, telling me something, but I had no idea who he was. I tried reaching out and turning his name tag around, but I just couldn’t reach my hand out to him.
In the back of my brain I knew touching him wasn’t appropriate, but I also desperately wanted to know his name, and position.
Because I couldn’t talk I couldn’t ask him.
He finally walked away without me ever knowing who he was, what his qualifications were, or even what he said. I was just to focused on the name tag to listen.
Note: Normally I wouldn’t have been so inappropriate to reach out to a stranger but all those meds, and my need to know who he was, changed the situation. I felt it was my only option.
6.) When you’re patient calls, answer.
After I woke up from sedation, but still couldn’t get out of bed, a nurse almost learned this the hard way.
He was sitting at the end of my bed doing paperwork when I called him. Instead of answering, he got up and walked away.
It was hard for me to call him because I was so weak. I kept calling because I had to use the bed pan.
Finally another nurse came to my bedside and asked what I wanted.
If that nurse hadn’t come at that time, my nurse would have had a big mess to clean up.
7.) Provide pain killers upon discharge from the ICU.
Having a tube stuffed down your throat with such force that it scapes the inside of your esophagus hurts and it leaves a lasting wound.
The pain in my throat was much more than the sore through you get from a cold. It was a raw wound all the way down, and it took about 6 months to completely heal. I thought the doctor used a drill to make me a new throat because my old one had clogged up.
To combat that I was offered cough candies. This was in the ward after the ICU, not the ICU. Cough candies do not help. That’s like offering a bandaid to a wound that needs stitches.
Painkillers, or throat spray or something I haven’t heard of is what’s needed.
The pain behind my nose where the feeding tube went in was also sore, but not as sore. It too took months to fully heal.
Make sure the ward the patient goes too, knows that the patient is in pain and cough candies are not good enough to stop the pain.
8.) Provide GURD medication.
The acid of acid reflex rubbing on a throat that has been damaged that way is agony.
Please prepare for this, and make GURD medication a normal part of treating somebody after they are extubated.
9.) Explain… everything
Explain the procedures you are going to do, and why you are doing them.
Explain the medicine you are giving and why you are giving them.
10.) If a patient is not compliant ask what the problem is.
After I was extubated I refused to eat or drink. Although my nurse implored me to I just wouldn’t do it.
I wasn’t being non-compliant just to be difficult and make the nurse have a bad day.
I wasn’t eating, because I was afraid to vomit.
When the doctor pulled out my feeding tube, he told me “Ok, don’t throw up, or we’ll have to do this all over again.”
I didn’t know I had been intubated, extubated and intubated again, because I threw up and aspirated before. I had no memory of that. I didn’t know I had pneumonia, or sepis after being intubated the first time. I didn’t even know why I was in the ICU.
What I did know, was I couldn’t vomit if I had nothing in my stomach to vomit.
Not eating seemed like the best option.
If the nurse had asked me, and then explained what happened, I might have eaten then.
In the end the nurse asked what I most wanted to eat, and then got that stuff for me from the cafeteria even though it was unhealthy.
It sat on my beside table for a while before I finally consented to eat it. I may have resisted the temptation in the beginning but not forever.
To all the ICU staff: Thank you for doing what you do.
To all who are still reading this: Thank you for reading this blog.
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In my next blog post I will give some things of what not to do, and in my blog post after that I will give some things of how to help visitors to the ICU.