Well, dad's "improving"; but now he has ICU psychosis.

[*********]

I don't really know how I feel.

 

Dad's improving in that the doctors and nurses now think they may be able to eventually wean him of the ventilator. So that's good, right?

 

But now that he's more 'alert', it's even harder to see him. I mean, his kidneys are still not working, he does still have a tracheotomy, his heart has significant damage, he has a giant bedsore that is causing him significant pain, he's on a feeding tube, and now he's delirious (ICU psychosis is just a fancy name for delirium caused by several contributing factors that happen to people with extended stays in the ICU). He asked his nurse last night (and by 'asked', I mean he somehow communicated; I'm assuming by mouthing the words since he still can't speak or write) why he was being held against his will.

 

I'm sorry; I can't help but wonder what we've done to dad. I mean, I do logically understand that the heart attack did this to dad. But I feel partially responsible for all the ensuing 'complications' we've let him endure.

 

I know my sister thinks I just need to have more faith. Maybe she's right. Maybe I'm just too weak.

 

He has a neuropsych eval today. Maybe that'll make me feel better. Or, maybe not. I don't know. Mom did say he's not restrained and using the suction thing to clear his own mouth (since he can't swallow, they have to use a suction thing kinda like the dentist uses to clear his mouth). She thought that would make me feel better.

 

I mean, what kind of alternate dimension do I live in now where 'Dad is suctioning his own mouth' is supposed to make me FEEL BETTER. NO! That doesn't make me FEEL BETTER. The fact that dad needs his mouth suctioned at all is AWFUL.

 

But like I said, maybe I'm just too weak. I don't know.

Edited September 21, 2012 by bethanyniez
I only pluralize with apostrophes while under a lot of stress, I promise.

[Impish]

You're not weak. :grouphug::grouphug::grouphug::grouphug:

[Parrothead]

You certainly aren't weak! :grouphug::grouphug:

[TravelingChris]

Bethany, I am so sorry. You aren't weak. Someone who is in this condition, especially at his relatively young age, would be devastating to anyone who loves them. :grouphug::grouphug::grouphug:

[Just Kate]

How awful. I'm so sorry. :grouphug:

 

You're not weak at all and I am sure that most would feel exactly as you do.

[Twigs]

:grouphug::grouphug::grouphug:

[pdalley]

:grouphug: You are not weak. Not at all.

[blakereese]

:grouphug::grouphug::grouphug: I am so sorry. It must be so hard to see your Dad like that and feel so helpless. I don't have any great advice, because there isn't much you can do.:( It is your mom's call for the most part and I know she can't be easy to reason with right now. The emotions get in the way at a time like this, it just can't be helped. Please try not to feel responsible, the guilt is terrible and not what you need right now. I am so, so sorry. :grouphug::grouphug::grouphug: (you are NOT weak)

[southcarolinamom]

:grouphug::grouphug: Bethany, You are NOT, NOT, NOT weak! I wish I lived close by to bring you a basketful of cupcakes and some spiced chai tea. I'm so sorry you are having to witness this painful decline in your dad's health. I can't imagine. Keep posting when you can! It's our job to lift you up in prayer.

[Harriet Vane]

What you are feeling is totally normal.

 

I remember feeling this way when my aunt (more like a sister) was hospitalized following surgery for a brain tumor. Seeing someone intubated like this is just awful. It was even harder as she weaned off the meds, because she had significant brain damage. She went from 'normal' to advanced dementia, overnight.

 

In many ways, our relationship as adults had been difficult, but we had been very, very close growing up together. Seeing her in the ICU, day after day, was unbelievably difficult. I wouldn't wish that existence on my worst enemy.

 

:grouphug:

[DianeW88]

I'm so sorry, Bethany. It's never easy to see someone you love in pain. That certainly doesn't make you weak!! :grouphug: The best thing you can do is to be encouraging around him and try and cheer him up a bit. Read out loud, talk to him, spend time sitting with him. All of those things will help his body relax and allow more healing to take place. Stress inhibits healing, so if your siblings or mother are acting stressed around him...get them the heck outta there!

 

Hang in there. Hopefully he will start improving rapidly now.

[*********]

What you are feeling is totally normal.

 

I remember feeling this way when my aunt (more like a sister) was hospitalized following surgery for a brain tumor. Seeing someone intubated like this is just awful. It was even harder as she weaned off the meds, because she had significant brain damage. She went from 'normal' to advanced dementia, overnight.

 

In many ways, our relationship as adults had been difficult, but we had been very, very close growing up together. Seeing her in the ICU, day after day, was unbelievably difficult. I wouldn't wish that existence on my worst enemy.

 

:grouphug:

 

That last sentence is so true. I mean, yes, there are people I know who certainly aren't my favorite in the world. Still, I wouldn't want them to go through this.

 

I appreciate the support, really. And the prayers; I hate to think the mess I would be without them. But honestly, I didn't post that I'm weak because I needed to hear everyone tell me that's not true. I honestly think maybe I am. I mean, why doesn't this bother my sisters as much as it bothers me? How can they act like 'Oh, this is great! Dad's getting so much better!' when all I can do is go 'Um, dad's having to SUCTION HIS OWN MOUTH. How is that better?!!' I mean, I don't SAY that to them, but I THINK it.

 

Maybe I'm just more emotional than they are. Well, ok, I KNOW that I am. I guess I'm struggling with that. Being an emotional person; is that ok? Does that mean I'm weak? Do I need to be less emotional and more logical? I don't know. That's just what I'm struggling with right now.

[Trez]

You are doing all you can and have nothing to feel guilty about. I know this is easier said than done. I experienced similar to this with my dad who went into surgery lucid (cancer) and never recovered. We also went through ICU, ups and downs with medication causing hallucinations and then having a day perhaps where he was really 'there'. It is such a hard thing to go through and as a mom having to shield the kids from your own worry/pain.

 

Stay strong, take care of yourself and take comfort in your immediate family. :grouphug:

[1bassoon]

:grouphug:

 

Glad you can come here and vent/share/etc.

 

Praying still.

[Alphabetika]

You're not too weak. Please, give yourself grace. I have BTDT to some degree and it's a horrible situation to be in. I am so sorry. Praying here.:grouphug::grouphug::grouphug:

 

ETA after reading your response: Even if it's true that you're more emotional and less logical, this is not a flaw. This is who you are. My experience with medical situations with my mom (including but not limited to extended intubation, dialysis, kidney failure, radiation treatment and chemo) is that some people treat the situation with "logic" in order to seem strong at the time, others do not. Because my brother lives out of the country, I was the one handling everything; therefore, I'm sure at times I seemed more "logical" than emotional, because that's what I had to do to be on top of the situation and deal reasonably with the people involved. But in private, I was very emotional, and in the case of my mom's extended intubation/ICU stay/recoivery afterwards, I basically went off the deep end once it was over, like a post-traumatic stress reaction.

 

I visited my mom daily when she wsa intubated for three weeks. Each time, I had to gear myself up as I walked through the halls of the hospital, feeling sicker and sicker as I got closer to the door, having what I now know was like a mini-anxiety attack each time. Even though my mom was the one who was suffering, I felt like I was walking to my own execution each time. And I at least had the "comfort" of knowing that for most of the time she was intubated, she was unconscious and wasn't completely aware of her condition. But for you to see your dad like this and know that he is aware enough to "suction his own mouth," well, it's surreal and horrifying. It just is. Your family members may not see it that way, but you do, and I can identify. It's like watching your own dad be tortured and not being able to do anything to stop it. Please, give yourself grace and let yourself feel what you're feeling. :grouphug:

Edited September 21, 2012 by Alphabetika

[Tap]

Maybe I'm just more emotional than they are. Well, ok, I KNOW that I am. I guess I'm struggling with that. Being an emotional person; is that ok? Does that mean I'm weak? Do I need to be less emotional and more logical? I don't know. That's just what I'm struggling with right now.

 

 

In your logical brain, you know that everyone processes things differently. This difference between you and your sis is a glaring example of this. She is looking for anything to hold on to. She is grasping at straws. You are looking at the whole picture and seeing the situation for what it is. That does not make you weak, that just means that you have a broader view of the picture.

 

She is hoping for a miracle comeback for you father and looking for any clues that it could be happening. She is likely in denial and is using her faith and these actions (like him suctioning his own mouth) to feed her denial about the big picture. She loves him dearly and wants to hold out hope against all odds that he will be okay.

 

You are looking at all the facts. You are very strong in your faith. You are not hiding behind your faith and his actions, to manipulate or skew your view of the situation. You love him dearly and don't want him to suffer if the end is inevitable.

 

Neither of you is wrong. Neither of you is right. You both love your father deeply, passionately and respectfully. You both have strong faith. You are just looking at two different parts of the same picture.

 

When my father died, I was sad but fine. I had said goodbye and like you was relieved to see him not suffer any more. (Brain, bone and lung cancer-in pain and spoke gibberish) My sister was a mess for a long time. She was mad a me for seeming cold, but during the final month of his illness, while she was holding out hope and wishing for a miracle, I was grieving and letting go. When he died, I was relieved for him, deeply saddened, but relieved. She didn't start to grieve his loss for a while after he died and then she had so many emotions to process at once it overwhelmed her. She didn't do it wrong/I didn't do it right. We just each processed our feelings on grief they only way we knew how.

 

Continue to love your father, your mother, your sister. Do not let anyone question your faith or your grieving process, it is not up to them to judge you. Walk your path and let them walk theirs, loving eachother as best as you can through it all. Forgiving each other for things said in a time of great hurt and taking great care of your father along the way. :grouphug::grouphug:

[*********]

Thank you Kenzie, Tap, Heather. Everyone.

 

Really, thank you.

[TravelingChris]

Bethany, gently, I think your sister is the one who isn't looking at reality but as others said, we all process grief in different ways. In reality, the fact that he can't coordinate swallowing is not a good sign and I think you know that. While he was unconcious, all of you could think anything at all about his future condition. After all, we have all seen or heard stories about people coming out of comas who are fine. But there are also people who aren't fine and as you rightly suspect, not being able to swallow is not a good sign.

 

I will continue to pray for your family and for your dad.:grouphug::grouphug::grouphug:

[In the Rain]

:grouphug:

[Soror]

Being emotional is not weak, it is sad that is a common thought. As pp said we all process things differently, it isn't right or wrong. Wishing you some peace.

[Susan C.]

Tap tap tap :iagree: !!!

 

I just read a health article about ICU issues, it did say ear plugs at night do help them sleep and not be interrupted by noise 24/7. See if the hospital can work towards giving your dad low light at night and see if you can bring in the soft foam ear plugs for him.

 

My dh was in ICU several years ago. There were some very ill people in there and it traumatized me to see all of them. We are talking knocked out on a ventilator. I asked the nurse if they got better. The nurse said that amazingly, most of them did, but it took awhile.

[Denisemomof4]

You're not too weak. You have endless love for your dad and your heart is breaking seeing him like this. You love him so much, a selfless love, that you don't want him to suffer anymore. You realize his quality of life will never be the same again.

 

You are beyond exhausted and can't think or see straight.

 

Your sister also loves him dearly but she is so filled with fear over losing him that she will stop at nothing to save him, regardless of the quality of life he will have.

 

i lived this exact scenario. And since mom lived with me but sister had medical POA, I was forced to turn my mother into a human pin cushion, with doctors questioning my motives until they new the truth, regularly. The doctors were beyond wonderful with me because they knew my hands were tied. But my mom suffered more than she should have and ut haunted me.

 

Looking on the positive side, it is better that your dad can suction his mouth himself. It is good he knows when it is needed.

 

i have never heard of ICU psychosis. I am so sorry he has this. I really hope they are medicating him. He needs some medicine to calm his nerves, psychosis or not.

:grouphug::grouphug::grouphug::grouphug::grouphug:

[justLisa]

:grouphug::grouphug:

[Entropymama]

I so, absolutely, completely hear you. I feel like a terrible person to say this, but I have wondered if things weren't more 'humane' when they didn't have all this technology. It is very terrible to say, "My dad was young, had a heart attack and died. It was so sad." But is it worse to deal with the dragged out awfulness of ICU? I guess it is if they recover, but the interim is SO HARD.

[*********]

I so, absolutely, completely hear you. I feel like a terrible person to say this, but I have wondered if things weren't more 'humane' when they didn't have all this technology. It is very terrible to say, "My dad was young, had a heart attack and died. It was so sad." But is it worse to deal with the dragged out awfulness of ICU? I guess it is if they recover, but the interim is SO HARD.

 

Please don't feel like a terrible person. This is EXACTLY what I'm feeling right now.

[Tress]

You are not weak! The situation is terrible and you are feeling that.

Praying for you and your dad.

 

:grouphug:

[celticmom]

:grouphug:

[AvasMom]

I can tell you as a former ICU nurse that the feelings you are experiencing are completely normal. It is NOT weakness. This situation has been traumatic for all of you.

[AvasMom]

That last sentence is so true. I mean, yes, there are people I know who certainly aren't my favorite in the world. Still, I wouldn't want them to go through this.

 

I appreciate the support, really. And the prayers; I hate to think the mess I would be without them. But honestly, I didn't post that I'm weak because I needed to hear everyone tell me that's not true. I honestly think maybe I am. I mean, why doesn't this bother my sisters as much as it bothers me? How can they act like 'Oh, this is great! Dad's getting so much better!' when all I can do is go 'Um, dad's having to SUCTION HIS OWN MOUTH. How is that better?!!' I mean, I don't SAY that to them, but I THINK it.

 

Maybe I'm just more emotional than they are. Well, ok, I KNOW that I am. I guess I'm struggling with that. Being an emotional person; is that ok? Does that mean I'm weak? Do I need to be less emotional and more logical? I don't know. That's just what I'm struggling with right now.

 

Maybe you're just more honest than they are? They may be working very hard at keeping that "brave face" up and that's fine because that's how they deal with it but how you deal with it is ok too.

[blakereese]

Maybe you're just more honest than they are? They may be working very hard at keeping that "brave face" up and that's fine because that's how they deal with it but how you deal with it is ok too.

 

:iagree: Everyone deals with this differently. They may actually be in the denial phase which is really a normal place to be at this point. They may not be pretending, but really do think maybe, just maybe Dad will be OK. He's improving, and we'll take him off the trach, he'll be weak, he'll be sick, but he'll be OK. It is easy to think this and feel better about the situation and just sort of live it, iywkim. I was like this for a day with my grandma. And then I became more like you are feeling, and couldn't stand to see her that way. It is a process and some people get through it quicker than others. :grouphug: I am so sorry that this happened, your Dad is so young. :grouphug:

[thescrappyhomeschooler]

I so, absolutely, completely hear you. I feel like a terrible person to say this, but I have wondered if things weren't more 'humane' when they didn't have all this technology. It is very terrible to say, "My dad was young, had a heart attack and died. It was so sad." But is it worse to deal with the dragged out awfulness of ICU? I guess it is if they recover, but the interim is SO HARD.

 

I wanted to say something like this, but didn't know how to word it. When my mom had open heart surgery, she had an allergic reaction to some pain med and stopped breathing. She was already in the ICU. They didn't intubate her, but put her on some kind of machine like a CPAP to keep her breathing. It was a long road to recovery for her, but in the meantime, my sisters and I spent a lot of time in the ICU. I felt the same way- that all of this intervention was so unnatural and that most of these people would have passed on already and I wasn't so sure that the quality of their lives at that point was better than just moving on. Of course, no one wants their loved one to die. So, that's why we have all of this stuff. I think the end of life process must have been easier when there weren't all these choices.

 

:grouphug: Bethany. I'm so sorry you're in the middle of this. Everyone handles things differently, so don't let your family make you feel bad for your feelings.

[Tammyla]

:grouphug:ICU and stress heaped on families of loved ones can be so overwhelming.

[deacongirl]

You aren't weak. And when drs. and nurses are making end of life decisions for themselves and their own families, they usually see it from your perspective rather than your siblings' perspective. I'm sorry you are going through this.

[KidsHappen]

Bethany, there is so much that I could say but well I just really don't see the point. It is just important for you to know that I know what you are going through and how hard it is and that I feel for you and hope things improve soon. I am so sorry that you are another walking wounded right now that people don't even see much less understand. I don't even understand. I still have so many questions and no answers. The cardio rehab people tell us that it is always hardest on the family and I try to keep that in mind. :grouphug:

[Desert Rat]

:grouphug::grouphug: Bethany, you continue to weigh heavily on my heart. I'm so, so sorry that your dad (and you) are suffering so much. My dad always said, "When you reach the end of your rope, tie a knot and swing for a bit." How are your knot tying skills? I wish I lived closer to help.

[Harriet Vane]

That last sentence is so true. I mean, yes, there are people I know who certainly aren't my favorite in the world. Still, I wouldn't want them to go through this.

 

I appreciate the support, really. And the prayers; I hate to think the mess I would be without them. But honestly, I didn't post that I'm weak because I needed to hear everyone tell me that's not true. I honestly think maybe I am. I mean, why doesn't this bother my sisters as much as it bothers me? How can they act like 'Oh, this is great! Dad's getting so much better!' when all I can do is go 'Um, dad's having to SUCTION HIS OWN MOUTH. How is that better?!!' I mean, I don't SAY that to them, but I THINK it.

 

Maybe I'm just more emotional than they are. Well, ok, I KNOW that I am. I guess I'm struggling with that. Being an emotional person; is that ok? Does that mean I'm weak? Do I need to be less emotional and more logical? I don't know. That's just what I'm struggling with right now.

 

Not weak.

 

I preferred to think of it as empathetic. I felt I understand all too much, all too well, how badly this was changing her and how awful it would feel to exist in that way.

 

I also preferred to think of it as more honest, more realistic. Others felt like it was pessimistic. However, at the time, all that I predicted DID come true. I had no joy in being right though. I hated to see the suffering and all the ways that that played out. I would have loved to have my perceptions proved wrong. In the end, I was not wrong, and the others simply hated me for saying it before they were ready to see it (despite the fact that the little I said was said gently).I don't know what else I could have done though.

 

:grouphug: