Mom long term ICU trach ventilation, ICU delirium... - ICUsteps

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Mom long term ICU trach ventilation, ICU delirium, what can I do to help her emotionally?

Mich-chwk
Mich-chwk

My mom has been in the ICU for 5 weeks now. She had the flu, then pneumonia and went into septic shock. At the hospital she was sedated and ventilated. Her kidneys failed and she requires dialysis. About 2.5 weeks in she got a trach put in and they stopped the sedation. Today she is still on the ventilator and intermittent dialysis and has ICU delirium. I think she understands quite a lot, but it comes in waves.

Any ideas/suggestions for ways to make her feel better emotionally? She can't talk or lift her hands and it's so hard to watch when she tries to communicate because we usually can't understand. We have played music, massaged her with lotion, read to her, positive attitude, etc. Just looking to see if there are any other ideas that won't overwhelm her. It's a helpless feeling being in this situation!

Thank you for any ideas!

15 Replies
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Hi,

So sorry to hear your mom has been so poorly.

I remember it being very frustrating not being able to talk to my family, it was also emotionally and physically tiring trying to. My family talked to me about home life and family and brought in photos. I found scribbling and writing helped me a lot too so maybe when your mom is a little stronger that may help.

Sending well wishes,

Katie

Mich-chwk
Mich-chwk in reply to katieellen

Thank you for the reply! Yes, it seems like she gets tired trying to communicate with us, but little steps at a time.

I was desperate to hear from people who had been through and had come out the otherside. What was most difficult for me was not knowing what faculty would return & what ‘disability ‘ I would be left with. At first, would I be able to walk, talk again?. Later, would I be able to shower myself, climb stairs?Much later, would I be able to lie down and get up, crouch, kneel or jump if I wanted. Would my hands work again? Could I feed myself and clothe myself? Go to the lavatory unaided?

So much was uncertain and humiliating however kind & considerate family and medical staff were.

I just wanted assurance from a person I trusted.

The problem was that my thinking was out of kilter with reality - thanks, in part, to the effects of sedation & the trauma I had been through.

My stay in hospital was slightly longer than your Mom but for similar reasons.

I hope your Mom improves soon, it can take 12 days to recover from everyday you are on ICU

Mich-chwk
Mich-chwk in reply to Sepsur

Thanks Sepsur! It helps having that perspective. I'm not sure how much reassurance we can give right now as the doctors are hesitant to give specifics on what they think she can or can not do in the future. But it's something to talk to the doctors about for sure. It's still one day at a time, but it seems life we are at least in the right direction right now. Thanks again and glad to hear your story!

Hi,

Sorry to hear about your mom

I went throught a very similar experience a few years ago. I knew my partner was there for me and she did her best to comfort me and keep me updated on everything going on outside and also updated me on chats she had with various doctors, this I found really helped me.

I was also connected to a trachy and couldn't move my arms, she made a simple communication sheet with words, phrases and an alphabet. We would then communicate by me squeezing her finger as she pointed to the correct word or letter, yes it was very slow but it really helped me to tell her how I was, if I hurt, ask about my children and that I loved her. Anyway it got me through it, 8 weeks in ICU seemed like a lifetime.

My partner did all of the things you are doing and although you may not realise they all really help, I especially remember having my feet rubbed, silly but it was nice.

It can be emotionally difficult especially as the delirium can take you over. I spent many an hour gazing at the ceiling but later on I found watching TV helped me and listening to audio books.

It's weird but I look back on it all now with a real sense of achievement being back at work, cycling, running, swimming none of these things I really did before.

I hope your mom makes a speedy recovery x

Mich-chwk
Mich-chwk in reply to nick1972

Thank you so much! That is all very, very helpful.

Hi. When I was in ICU and then in a Dialysis Ward having coming out of a Coma with Sepsis communication was the hardest thing as I couldn't talk. My Nephew came up with an idea which Hospitals do use. He used an A4 sheet of paper with all the letters of the alphabet in Capital Letters and then a row of numbers. I would point to a letter with a pen and he would write it down. When I had completed the word I would make a motion with my finger which was a diagonal swiping motion. This meant it was the end of a word. We would communicate this way and it worked brilliantly until my fingers shrank back to normal size and was able to text with my phone again.

I know exactly what she is going through. The delirium, living awake nightmares, seeing things which were not there. Its a horrid place to be but keep up with the talking and having a presence there but most important try and use the Alphabet method. It really does work and reduces the stress and frustration.

I was in a Coma for over four weeks so think I do know a little about the subject.

All my Best Wishes

Phil

Mich-chwk
Mich-chwk in reply to Phil112

Thank you! I spoke with the social worker at the hospital and they have some of those communication boards so we will give it a shot!

Phil112
Phil112 in reply to Mich-chwk

Hope it goes well

As an update....

Very shortly after getting all of these great responses my mom started moving her right hand. She waved to me and it startled me at first! That was about 2 weeks ago. We started using the communication board, but it was a bit hard for her to think of all of the letters needed for what she wanted to say. She really wanted to use it but we weren't too successful. It did help having some phrases on the board and it helped her communicate that she was hot, thirsty, etc which was so helpful!

About a week ago her delirium cleared up and she started writing and that's changed everything. Lots of questions and requests.

She's 7 weeks in ICU and they just weaned her off the ventilator. Much earlier than they first thought so we are all cautiously optimistic. Maybe moving out of the ICU by next week and into the other hospital ward!

Next challenge is physio and the fact that dialysis may be permanently required...

This website has been so helpful during this time. Especially to hear from people who have made it. Thanks to all who contribute and share their stories!

Ive been wondering how it's going with you and your mom. Please update me, I think I've stepped into this same path and it is so difficult.

Mich-chwk
Mich-chwk in reply to Rhoolarney

Hi Rhoolarney,

I'm happy to say things are going quite well. I think my mom has been very lucky. Amazingly, her kidneys started working again and she doesn't need dialysis. No long term damage either. She ended up staying in the hospital for almost 4 months. She was discharged last June and was able to continue recovering and getting stronger at home. I think the key is to be patient and give your loved one time. The recovery is slow and we don't always see the progress that is happening. Today she is able to walk and move around the house without any assistance. Still not where she was before, but continuing to improve!

Luckily, she doesn't remember most of the time in the ICU. That's the tough stuff that we remember and talk about some of it with her. It's taken a lot of time for everyone to heal emotionally. The whole experience was really so hard - I hope you're doing ok and looking after yourself as well!

Thank you, its amazing and I wish your mom a speedy recovery.

my mom passed away after 33 days in ICU, partially I blame the hospital for their poor infection control, but no use in playing the blame game as it will not bring her back.

The hardest thing for me was not knowing what day it was, what time it was oh, how long I have been there, where was my family, what was my doctor doing what was happening to me etc. No one, not even me realized I didn't have my glasses on so I couldn't see very far. I was convinced the piece of paper on the table next to me held all the answers but since I was tied down with all these tubes I couldn't move. What seems like days trying to communicate with people with a trach tube and scribble Scrabble for writing I was finally able to reach that piece of paper and turn it over. It turned out to be the TV channel list. How frustrating. My hallucinations told me I had been there for months and the room kept changing as far as I was concerned I was in the new room every time I woke up. A simple calendar telling me what was happening would have helped so much.

Dry erase markers help alot

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