12 replies to this topic

[KarenJ]

It has only been 5 days since my husband had his accident. He has the breathing tube in his throat and is trying to say something to me but I can't figure it out and it's very frustrating.

Everytime he wakes up he starts desperately looking at me and mouthing the words and getting agitated and aggravated, but no one can guess what he's saying. They gave me a paper with pictures and letters but he can't seem to concentrate long enough for me to spell something... or to go through the list of pictures.

I'd appreciate anything that would help...thanks

[airart1]

wow, have they even done the securing of his injury? he might just be trying to figure out what happenned..........i'm sure he's doped up, it was 7 days of basic enduced coma before they did my surgery....he might just be coming in and out and i'd say he'll not remember any of whats going on yet......

[wheelchairbling]

I'd say give him a brief recap of the situation whenever he wakes up - where he is, what happened, what the breathing tube is, if the rest of the family is okay...whatever important things he might be forgetting.

Also, try just a big Yes/No board, and a simple question, like "Are you hurting?" If that's a yes, you can try to narrow it down.

Try to lower the stimuli - see if you can cut off that awful overhead light, maybe get some very soft music in the background, that kind of thing. And check him for any little thing like cracked lips that might be distressing him.

It doesn't seem like much, does it? I wish I could offer more...I just hope he can get the tube out soon...

[wiggy]

The ICU drugs were not enough to fully keep me in the coma, even when maxed. It sounds like it's the same problem with your husband.

I was agitated because I didn't want the vent any more, was told I even tried to have a physical altercation over it (yeah, like I could do anything pre surgery about my condition). I was agitated because I didn't think I belonged there and just wanted to get up and leave. I had a few halucinations (not like they were my first) but my mind completely accepted them as reality, and I was agitated over that stuff too. I eventually remembered my sign language and communicated with my family that way (wife and mom both know rudimentary sign language). Even through all that, sometimes I just gave them "alphabet salad" or "word salad", some things made sense and other things weren't even words, and I would get agitated over that. I was most agitated because I could not sleep, basically went 7 days only getting an hour here and there.

Above all, I kinda want to say that he is just as confused as you are, but it should get better soon. I was only on the vent for a full week in ICU (spent another 3 days down there before I got moved up). After I quit receiving the ICU cocktail, I was able to speak and made a lot more sense than before.

This is all assuming he did not receive any kind of head injury, and I am hoping that he did not.

Things will get better, some things come quickly but most things move quite slowly. I'm sure you've heard this a dozen times by now, but we have to measure progress in weeks and months, not hours or days.

[KarenJ]

Thanks for the replies...

He does not have a head injury...thank god...not another scratch on him except the broken neck. He did have a plate put in to hold his vertebrae together but a permanent one will still have to be put in. The nurse recaps everything for him everytime she works on him...maybe he is just not prcessing it well enough yet. I will try just reciting a list of things he MIGHT be asking about and hope it will help him a little until he is able to have the tube out. I just hate to see him suffer and my imagination runs away with me I suppose. Thanks wiggy for giving me an idea of what was going on in your mind as you were in ICU....I'm sure it is probably along the same lines...he has some movement of his upper arms but that's it for now....I'm ashamed to say that I just want to run away every time he starts trying to talk because I don't want to aggravate him...I'm assuming I'm not the first one to feel that way

Edited by KarenJ, 14 October 2010 - 03:31 PM.

[wheelchairbling]

Oh, yes, you're not the first to want to run away! It's a big shock trying to talk to someone who can't communicate normally - it upsets all your social reflexes, and you can't think of what to do.

You are making sure to get away sometimes, aren't you? Be sure to go all the way outside and get sunlight. You have to pace yourself...it's a long haul and you need to maintain your health.

[KarenJ]

wheelchairbling, on 14 October 2010 - 04:30 PM, said:

Oh, yes, you're not the first to want to run away! It's a big shock trying to talk to someone who can't communicate normally - it upsets all your social reflexes, and you can't think of what to do.

You are making sure to get away sometimes, aren't you? Be sure to go all the way outside and get sunlight. You have to pace yourself...it's a long haul and you need to maintain your health.

Well, we live 2.5 hours away from the hospital and I stayed the first 2 days straight and got wiped out. I have been going home for one day and then back to the hospital for one day and alternating...I still have kids to care for at home I am now the sole breadwinner so I will have to return to work on Monday, but will probably continue to go visit every other day until he starts getting stronger...right now he mainly sleeps through my visit (except for the times he wakes up and tries to talk). I'm just glad I found this forum you've already helped me out. I'll try to remember to pace myself fer sure.

[Bethk]

What you are feeling is what i am going to guess as normal. I think those of us that are caregivers/lovers have all felt those feelings at one time or another..(or daily). I remember my sig other waking up looking around and when he would see that i was there I would get a blank stare from him, and he would gag on his vent tube trying to get it out with his tounge. I then would go up to him and whisper gently in his ear what had happpened, where he was, and how important it was for him to stay quiet. I would take my ipod and place the earbuds one in his ear and one in mine and play all those songs that meant anything to us. I whispered prayers in his ear throughout the day. He was so scared and as tears wuold roll down his cheeks I would just lay my head beside his and cry with him telling him that I was scared too and that it was ok to be scared. I remember just wanting to run the other direction as fast as I could and at the same time wanting to climb in bed with him and lay in his arms as I had done just a few days before his injury. Its only been 5 months and every day is a continued challange but at the end of the day I still love him and care very much for him.
As far as what he is trying to say..just tell him you dont understand and that you are very sorry. I found the more I tried to make out the words the more frustrated he got which then caused more medical problems..b/p..mucous..etc.. It was a challenging decision to make but we had to go with a trach which was better for him but didnt make communication any easier. As soon as he was able to be weaned off the vent he learned within 4 days how to talk over the trach and the Dr's told him it would be at least 3 weeks. He got to have the trach pulled within 2weeks. Everyday will bring you new challenges and your patience will be tested, as well as your strength. I have always been told and believe it very much God only gives you what you can handle and if He leads you to it He will lead you through it. You just have to let go and let Him.

[melbel]

Hi Karen,

I'm Wiggy's wife and he's absolutely spot on about what happened in the ICU. At first when the meds were doing what they were supposed to - keeping him from remembering, he was pretty confused. He'd ask the same questions every time I saw him. I was 4 months pregnant when he had his accident and I brought in a recording of the baby's heartbeat to play for him. The first several times I played it were like the first time every time. Once the meds stopped working, he started remembering more. They told us that some of the meds in the ICU are specifically to make the patient not remember being there. So I hope that is the case for your husband and his time in the ICU will be a blur. I started a routine of telling him the same things each time at the beginning of a visit and we could spend more time just holding hands and resting. We tried the letter boards and they were more frustrating than helpful. When we realized we could all communicate with the sign language alphabet, it got much better, but I won't pretend to say it alleviated all the communication issues. When he gets frustrated ask him if it's something that he needs you to do immediately. Put on chapstick, scratch his head, etc... I'm hoping that he's off the vent and out of ICU since his accident was just over 3 weeks ago. And this is a lifelong journey you're on now, pace yourself. When (if he's not already) able to communicate better, make huge effort to make that communication a huge priority. When you stop communicating, things will start to unravel. I often err on the side of over-talking than of not talking about something at all. I know from some of the looks I get that it's annoying sometimes, but I'd rather know than misunderstand because we didn't talk about something.

Take care of yourself, remember to get rest - you need it to, and I hope things are getting better.

Melanie

[Krazey]

Bethk, on 06 November 2010 - 08:00 PM, said:

What you are feeling is what i am going to guess as normal. I think those of us that are caregivers/lovers have all felt those feelings at one time or another..(or daily). I remember my sig other waking up looking around and when he would see that i was there I would get a blank stare from him, and he would gag on his vent tube trying to get it out with his tounge. I then would go up to him and whisper gently in his ear what had happpened, where he was, and how important it was for him to stay quiet. I would take my ipod and place the earbuds one in his ear and one in mine and play all those songs that meant anything to us. I whispered prayers in his ear throughout the day. He was so scared and as tears wuold roll down his cheeks I would just lay my head beside his and cry with him telling him that I was scared too and that it was ok to be scared. I remember just wanting to run the other direction as fast as I could and at the same time wanting to climb in bed with him and lay in his arms as I had done just a few days before his injury. Its only been 5 months and every day is a continued challange but at the end of the day I still love him and care very much for him.
As far as what he is trying to say..just tell him you dont understand and that you are very sorry. I found the more I tried to make out the words the more frustrated he got which then caused more medical problems..b/p..mucous..etc.. It was a challenging decision to make but we had to go with a trach which was better for him but didnt make communication any easier. As soon as he was able to be weaned off the vent he learned within 4 days how to talk over the trach and the Dr's told him it would be at least 3 weeks. He got to have the trach pulled within 2weeks. Everyday will bring you new challenges and your patience will be tested, as well as your strength. I have always been told and believe it very much God only gives you what you can handle and if He leads you to it He will lead you through it. You just have to let go and let Him.

Thank you Beth...you described my situation exactly

melbel, on 09 November 2010 - 04:09 PM, said:

Hi Karen,

I'm Wiggy's wife and he's absolutely spot on about what happened in the ICU. At first when the meds were doing what they were supposed to - keeping him from remembering, he was pretty confused. He'd ask the same questions every time I saw him. I was 4 months pregnant when he had his accident and I brought in a recording of the baby's heartbeat to play for him. The first several times I played it were like the first time every time. Once the meds stopped working, he started remembering more. They told us that some of the meds in the ICU are specifically to make the patient not remember being there. So I hope that is the case for your husband and his time in the ICU will be a blur. I started a routine of telling him the same things each time at the beginning of a visit and we could spend more time just holding hands and resting. We tried the letter boards and they were more frustrating than helpful. When we realized we could all communicate with the sign language alphabet, it got much better, but I won't pretend to say it alleviated all the communication issues. When he gets frustrated ask him if it's something that he needs you to do immediately. Put on chapstick, scratch his head, etc... I'm hoping that he's off the vent and out of ICU since his accident was just over 3 weeks ago. And this is a lifelong journey you're on now, pace yourself. When (if he's not already) able to communicate better, make huge effort to make that communication a huge priority. When you stop communicating, things will start to unravel. I often err on the side of over-talking than of not talking about something at all. I know from some of the looks I get that it's annoying sometimes, but I'd rather know than misunderstand because we didn't talk about something.

Take care of yourself, remember to get rest - you need it to, and I hope things are getting better.

Melanie

Thanks Melanie. That helps. I has been 4 weeks now and he has started to be able to take a deep breath and then burst out a word every now and then that I can make out I'm expecting it will get better with time. I have the same experience that we both get frustrated when I can't figure out what he wants.

[Krazey]

Well, it's been 2 1/2 months since the accident and the weaning from the ventilator has begun. He is able to speak when he's off the vent. and they finally let him have some applesauce & pureed beets yesterday =X It's a relief to be able to understand him now and I can see how I was just panicking when I first wrote this post. It was pretty scary. He still gets a bit confused but is pretty much coherent much of the time. Thanks to all who commented during my freak-out period

[Krazey]

Just thought I'd update in case someone else finds themselves in the same predicament. It's been about 2 and a half months since injury and he is still in ICU and still on the ventilator. It has gotten better now since he can take the ventilator off for about 3 hours at a time and he is able to talk without it. He still can't eat...when they started letting him have some food about a month ago, it must have gone into his lungs and he ended up with an infection. They try once a week to give him food but I guess it goes down the wrong way so he gets cut off for another week. When I read my original post I can remember the anxiety and frustration so well. At the time I knew NOTHING about this kind of situation and had NO IDEA of how long the recovery process is. I only knew that he was scared and confused and trying to communicate and I couldn't understand. He tells me that he doesn't remember the first couple of weeks at all and that he does remember trying to talk to me and feeling very angry that he couldn't make me understand. If I had known then, that it would take a month or so but that he WOULD eventually be able to talk...I don't think I would have been so freaked out. They're still trying to wean him off the vent. so he can start to eat and eventually get on to rehab...it's slow-going and he gets down, but he's doing much better. His kidneys have stopped working, however, and he gets dialysis every couple of days...don't know if this is permanent or if they will start working again. All he wants for Christmas is to go home, eat and pee

[GoldenYears]

When PawPaw went through that stage, I was living at the hospital and caring for him. He was so very critical that first 4 days. He of course could not speak because of the tube, but he tried. Each day he tried more and more to speak.


Finally the day came that the tube came out. His voice was weak, a whisper actually, and I bent close to hear him.


In his labored whisper, my ear so close to hear, he said, "Goldie, you stink, you need a bath".


Ah, the machinations of Caregiving!