Having a loved one on life support is HARD
With the COVID-19 Pandemic, there are a lot of buzz words flying around like ‘ventilator’, ‘intubated’, ‘extubated’, ‘life support‘, and ‘respiratory failure’. It’s a really scary time! And the problem for a lot of people with affected loved ones is that they cannot be with them. Or even if you’re reading this for a non-pandemic reason you might be wondering ‘What’s going to happen?! What is it like?!’
Well, unfortunately, I recently learned first hand what it’s like. My Dad went into septic shock in front of my brother and his wife while I was on an airplane rushing to get to him. We just thought he was really sick. We didn’t expect things to change so quickly, but they did. Which apparently seems to be the case for COVID-19 patients as well. He was very quickly intubated and put on a ventilator.
When I got to his ICU room my Dad became the first person I had seen on life support without a brain injury. And I learned quite a few things. Things I want to share for the people who can’t be at their loved one’s bedside or the ones that just want to know what might happen.
They will be sedated
My Dad was sedated but moderately alert when I got to him. He was able to mouth the words ‘I love you’ around his breathing tube and motion that he was itchy. We were able to communicate on a very basic level. But when it became clear that he was in quite a bit of pain and becoming agitated, they upped his sedation. At that point, he became mostly unresponsive for several days while his body fought to live.
They will be restrained
This was one of the hardest parts for me because it seems so barbaric. However, it’s totally necessary. My Dad’s hands were tied to his bed so he couldn’t reach his breathing tube and potentially pull it out of place. I untied his hands several times while I was hovering over him to try and make him more comfortable while I was watching him closely. Or, when he became less alert I untied him from time to time to massage his hands and move his arms some. Nurses cannot constantly hover over a patient, so the restraints are totally necessary.
The breathing tube location is SUPER important. If it is even moved a centimeter out of place it can be bad. Which is why the nurses want to protect it so much.
The machine might not always be doing the work
A ventilator doesn’t just provide synthetic breaths for a patient. It can also act as a fail-safe when the patient isn’t breathing enough on their own. Or it can be a CPAP, provide supplemental oxygen, or any combination of those. I’m not a doctor, so maybe they can also do more, but in terms of what I saw for my Dad, it varied between breathing for him, supplementing his oxygen, providing positive pressure, and just keeping his airway open. They ‘exercised’ his lungs after a few days to allow him to breathe on his own (with oxygen and positive pressure) and the machine would beep like crazy when he didn’t breathe enough. At which point they’d put him back on a ‘rate’ where the machine did the work.
Every nurse is different
Because my Dad spent a week in the ICU on a ventilator I got to know the nurses very well. I spent the first 2 nights in the hospital with him and after that, I stayed at least through the shift change so that I could speak to every nurse. They are ALL rockstars. But they will all have different thresholds in terms of what they’re comfortable with, how the IV’s are organized, etc. My Dad’s care was always AWESOME and each and every nurse was amazing. But they were all very different. They also take no shit. Nurses are badasses.
It’s harder to get extubated than intubated
Being put on a ventilator happens fast. Coming off a ventilator happens very slowly. There were several things they needed my Dad to do before they would consider taking the tube out. He needed to follow basic commands, tolerate being less sedated, and maintain his own breathing for long periods of time. For us, it became a catch 22, because he needed pain meds, but the pain meds knocked him out. So we got stuck in a loop for a couple of days of trying to wean him off but overexerting him thus requiring more pain meds and therefore being less responsive. Being extubated is a difficult decision to make because the last thing the doctors want is to traumatize you again with ANOTHER breathing tube.
They spend a lot of time alone
I know this is not what people want to hear. Especially if they’re not able to be with their loved one. But it’s true. Nurses are the primary caretakers and they are BUSY. It’s like being a stay at home mom on steroids. They are constantly interrupted, needed, and in the middle of a bunch of things at once. Your loved one will never be ignored, or sit for long periods of time needing something, but they will often be alone. I spent countless hours in my Dad’s ICU room just me and him. Of course, someone is always popping in every few minutes to check something, clean the floor, or just say hi, but the moments in between add up.
I was lucky because I could be with my Dad. I would talk to him, play music, or just sit and hold his hand. If you cannot be with your loved one you can always ask to be put on the phone. Or ask that music be played if at all possible. They may be sedated, but my Dad always seemed to appreciate it.
They cannot eat or drink
While my Dad was on the ventilator the nurses would do oral care to keep his mouth clean and moisturized. Also, when my Dad became more alert prior to being extubated, they would do water swabs to help wet his mouth because the man was THIRSTY.
After the tube came out he STILL was not allowed to eat or drink! He needed to pass a speech and swallow test before he was allowed to drink the ice water he desperately wanted. We spent days trying to help him combat the dry mouth and painful thirst with sponge swabs dipped in water. The reasoning behind this was that they did not want liquids going into his lungs… which I totally understand. But it was HARD.
It is not an easy recovery
Being intubated is traumatic. Both mentally AND physically. My Dad could barely speak above a whisper for days after the tube came out. His voice is STILL recovering weeks later. He’s also doing intense physical therapy to regain basic motor functions like walking and getting dressed. Being immobile and sedated in bed takes a massive toll on the body. So, unfortunately, when a person is extubated they may still have quite a long uphill battle before them before they’re able to return to their normal life.
Being on a ventilator is hard for everyone involved
If you have a loved one fighting for their life on a ventilator right now… I’m sorry. It is a very hard thing to go through. For both them AND you. I was very fortunate to be able to be with my Dad almost every day he was intubated, and I can only imagine the pain of not being able to see or talk to him during his ordeal. My hope in writing this is that I can provide someone with a real picture of what it might be like for their loved one. And to give them hope. Because while it is hard and scary, it is also an amazing medical procedure that can save so many lives.
I cannot recommend therapy enough in a situation like this. Personally I use Talkspace, so all I need is my phone and viola: therapist. Things like this are not normal stresses. It is OK to ask for help.