My dad is giving up, need advice soon!!!
AnonymousOctober 17, 2007 at 10:39 am
:confused: My sister called me yesterday and said that when she got to the hospital that the nurse said my dad wanted to talk to her with the nurse there. The nurse deflated the thing on his trach and he started telling my sister that he is giving up. He has been strong for almost 3 months now and he still can’t walk or anything. He is tired and in pain and we don’t know how he feels. My sister started to cry and he told her I’m not telling you to hurt your feelings, I’m telling you because you’re the oldest and you should understand. Anyways, he said as soon as the doctor gets there this morning that he is going to talk to him and tell him the same because he is tired of being on the trach and vent and not being able to walk and having other issues. I go to the hospital 5 times a week and I’m going early on Friday to talk to the doctor as well. Is there any questions or suggestions that I should throw at him? Just a short summary of his condition currently if you have forgotten. He is currently is ICU on the vent and it’s breathing level is at a 6, he’s has the trach. He has gained alot of strength in his legs when we move them back and forth. He’s on the blood thinners. Anyways, what can we say. It would be great if someone could give us some feedback on what to do. I’m going to see him tonight if you or someone could help me on what i should tell my dad.
October 17, 2007 at 11:18 am
I have no experience in such debilitating cases of gbs, my son’s was mild compared to most. But I can offer you the knowledge I have from the posts here. I read and interact every day. There have been many patients like your father, many even worse. Most have felt like your father at one time or another I am sure. Some cannot even express their feelings. But most come through the other side improving when their body is ready. This very nice lady Ali was on a trach for a very long time, since then, she has had two children, is active and helps me quite often. That is a job in itself!
Anyway, I guess the best thing for you to do would be to search this site for others who have posted in a caregiver situation such as your self, and print out any helpful responses they may have made or recieved. Bring them to your dad and read them to him. Tell him how far he has come, let him know how far he can go when his body is ready. Remind him of his children needing him, grandkids if he has any. Make a photo board for him, reminding him of those who love and need him.
I am so sorry you are at this sad, confusing time of the illness. I will pray for your dad and family that somehow some little improvement happens SOOOOON to give him encouragement. Stay strong and positive! Believe me, I know it is hard, Kevin is home from school today (he is ten) with his legs hurting and he is so tired, he just wants to sleep. It kills him and me, and I too am running out of encouraging, positive things to say. Sometimes I get so pissed at gbs, I don’t even sugar coat it and say tommorrow will be better, I just say your right Kevie, this really sucks, but we have to just get through this day. Immature on my part I am pretty sure, but sometimes I feel like I have to acknowledge the ugly truth he is feeling.
Good luck tonight when you visit and I hope the right words come to you to convince your dad to be strong.
Sawn Kevies mom
AnonymousOctober 17, 2007 at 11:57 am
I added you on Yahoo messenger, I am willing to try and help anyway that I can. Message me sometime when your online. I am the liasion here in Ann Arbor but am willing to help anyone in lieu of you reaching a local one. Take care and both he and your family are in my thoughts and prayers.
AnonymousOctober 17, 2007 at 12:39 pm
I spent 5 mos. hospitalized and another 2 yrs. before I was really able to do most things “normal” people take for granted. That began in May of ’99. I still have residuals, including pain, today, over 8 yrs. out. I can fully appreciate what your dad is feeling/saying, ’cause I felt/said the same thing. And if you’ve not been in his place, you can’t understand why or how he can be ready to just “give up.”
My suggestion is to reassure him of your love and your willingness to do whatever it takes to help him get back as much as his body is capable of, no matter how long it takes or what it costs. But then you need to also tell him that not ever having experienced anything like what he’s going through, you can’t really understand how he feels or why he wants to quit fighting. Remind him of other battles in his life that he may have already fought and won and ask him if he’s really willing to let this illness take him down. If he says he can’t see any way to conquer it, remind him that God is all-powerful and can/will sustain him if he’ll continue to put his trust in Him. (I’m assuming here that your dad is a Christian. If not, find some other outside, positive influence that he can put his faith/trust in to help him recover.)
And then, hard as it may be, prepare yourself and the rest of your family to honor his wishes and let him go. I know how difficult that will be, but we all have to face our own mortality, and none of us knows what it will be that brings us to the final end. For your dad, maybe it is this bout with GBS.
Please don’t disregard what I’m saying because it’s unthinkable to do. Be positive with him about his chances for recovery and a meaningful life “after GBS,” but also be realistic that not everyone survives it. And unfortunately, many who do not make it after they’ve gotten as far along as your dad has succumb because they don’t feel the end result will be worth the fight to get there.
All that being said, if there is a survivor in your area who had it as bad as he does, try to contact them (maybe through a local GBSFI Chapter) and ask them to come see your dad. Nothing will encourage him more than to have someone WALK into his room and say, “You know, XX months/years ago I was in the same condition you’re in now, and I’ve recovered to where I can live an almost “normal” life.”
Sorry to be so long-winded. Hope something I said helps.
Best wishes, Byron
AnonymousOctober 17, 2007 at 2:20 pm
My mother was in the same situation 3.5 years ago.. She was recently on the front page of the newspaper and I included it in the forums.
It was a long tough road for her. Even to this day I know that when I look in her eyes that she has been somewhere that many of us will never understand..
She spent 4 months on a vent and 22 months away from home.. With the help of my WONDERFUL Dad, family and friends she is home. She still uses the wheelchair and her hands are very weak but she is home enjoying life to the fullest with her family.
Is your Dad on any antidepressants? I know my Mom was on a few.. I believe Zoloft is a good one.. Also have him set a goal. Is there a place he wants to see or maybe an item he would love to buy? THis could certainly encourage him.. If I was closer ( I am in Massachusetts) i would bring my Mom by and we could give you all a hug..
My thoughts are with you..
AnonymousOctober 17, 2007 at 4:54 pm
I do not know what to say except that there was a time or two when I wanted to give up. My wife would not hear of it told me your not leaving me in this messed up world alone. The Doc I had was great. He helped me through alot of depression. I ask him once when I was still on a vent and had a trach what was going to happen to me. He told me that one day I would get up and walk out of that place and tell all the nurses and docs thanks. I did and I thank God every day. I am not the same as I used to be but I still get to spend every day with my wife and family.
gbs march29 2007
AnonymousOctober 17, 2007 at 7:42 pm
many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousOctober 18, 2007 at 1:07 am
ditto the antidepressants. They should be giving him something if he is continuing to feel this way. I know i got to that point a few times (and i was already on antidepressants!) which is only normal given the situation. I cant presume to say that another persons life is or isnt worth living but i would hate to think he gave up too soon. Just keep telling him that there are others here who have felt exactly the same way as him and were ready to give up but somehow managed to hang on and make it through. Knowing what i know now, that i would go on to make a full recovery, i shudder to think what would have happened if anyone had let me give up.
AnonymousOctober 18, 2007 at 8:35 am
Good morning everyone,
I talked to a lady in Dallas that has recovered from GBS and now travels, has support groups, and talks to people that currently has the disease. Anyways, I talked to one lady and she talked to me for a while and said it has been 16 yrs now since she had it, but she lived too far to be able to come talk to my dad, so then i talked to another lady that lives in Dallas and she has scheduled to come to the hospital to meet with my family and my dad to tell her story, show us a DVD and try to give my dad some encouragement. When I first got to the hospital I could tell that my dad wasn’t in a good mood and he was probably going to tell me the same thing that he told my sister and aunt about giving up. I didn’t give him a chance I just went in gave him a kiss and told him that I love him. Then I started to tell him about these 2 ladies and then also told him about some of the things all of you have asked me to tell him when I got to the hospital yesterday. I told him you can’t give up because me and Felisha (my sister) aren’t giving up. We’ve been through tough times in our lives the 3 of us together and never gave up and he needed to think about that. I reminded him of b-day card that he gave me last year that said me, you, and Felisha are like 3 peas in a pod if one was missing we wouldn’t be complete and there would never be another like us. He started to cry and I told him remember you said we will always be together no matter what we go through or who walks in/or out of our lives. After a few minutes he was smiling and then the nurse came in and she was asking who I was and he said my wife. I looked at her and said I’m his daughter and she said I know you were tricking me and he started to smile. So anyways, I left last night feeling very positive and now very excited to meet this lady on Saturday. Thanks to all of you and the support you have given me I have been able to find her.
AnonymousOctober 18, 2007 at 8:55 pm
You have such a sweet, close knit family. Good for you for thinking to remind him of that card he gave you! He won’t give up now because he has too much time left with you and Felisha, and he doesn’t want to leave you. Your post put a huge smile on my face. That newly-found positive attitude will help him get better faster.
AnonymousOctober 18, 2007 at 10:03 pm
Thanks Shannon and it’s because of you and all of the other people on this forum that have made me strong and remember the challenges that we have been through together in our lives. I could never ask for a better father than the one that I have now and I won’t give up without a fight. He’s a fighter and he has proved that to me and my sister too many times. My sister said that when she went today and told him that someone was coming on Saturday that has recovered from this disease he was all for it and overall had a very good day. She said he just relaxed and they watched a soap opera together (The Young and the Restless). That’s what me him and my sister used to watch together when we were out of school. It’s so crazy how sometimes we forget the small things and then something happens and all of those small things become big things. I know he is head down a long road of possibly a slow recovery, but I know all of you will help me in the mean time to keep my sanity.
Thanks for all of the support and advice,
AnonymousOctober 19, 2007 at 1:51 pm
Keep the faith, and know in your heart that you and your family are MOST important in your Father’s recovery process. If it wasn’t for my mom and sister’s compassion and love, I wouldn’t be well on my way to recovery.
Life is like a poker game; the cards are dealt from the top of the deck. Its important to hold on to the good cards, and toss the bad ones. We don’t have control over the cards we receive!!
AnonymousOctober 20, 2007 at 1:45 pm
Is there a psychiatrist on your Dad’s care team? It is natural for a person suffering from a chronic illness to become depressed. Depression can be treated. So…
As you can tell from the replies. Your Dad will recover over time. The hard part is getting him to understand this. You and your family are doing a great job.
I pray that God will give you, your Dad and your family the strength and courage to keep going.
AnonymousOctober 20, 2007 at 9:00 pm
I just recently registered with the site so this is all new to me.
I had GBS when I was in college in 1971. Last year, I began a new bout with it on 10/26/06 and left the hospital on 1/12/07. While going through rehab, I met a patient who also had GBS. It was his first introduction to it and he had a hard time coping with it. Each day when I saw him in rehab, I made sure I gave him a little “push” to get him going.
For your father, I’m sure that it is a very frightening experience. I was in the same place last year…breathing…feeding tube. But, because I had gone through it before, I felt that I was going to come out of it eventually. They thought that I was going to go home in a wheelchair. I wouldn’t hear of it & pushed myself to get stronger once in rehab.
Since joining this site, I’ve come to the realization that there are a lot of people out there who have gone through the same experience that I have.
Try let your father know that you have “spoken” with others who were at one time in the same position that he is in and that if they could, would be at his bedside to show him that it can be done.
Good luck & do not let him give up!
AnonymousOctober 20, 2007 at 10:33 pm
There were times when I was ready to give up, and am I glad I did not. I was diagnosed with CIDP 2 1/4 years ago, went down hill for another 8 months and ended up in bed, not being able to move anything, totally numb. Things turned around very slowly, now I am walking again, not pretty, but walking and have been driving for 6 months. Arms and hands now totally normal, upper legs normal but ankles and feet still have a way to go. I can tell you, support from the family was the turn-around at the lowest times. Healing things takes lots of time and a lot of hard work. I can’t even try to know what my family went through during the darkest periods, but their support was the difference for me, although it may not have been very apparent.
I hope this helps a bit. Good luck.
AnonymousOctober 20, 2007 at 10:34 pm
I am very glad that you were able to so eloquently tell and show your dad the love you have in your family.
I ditto what others have said about discouragement often accompanying this illness because it can so rapidly and completely change one’s life. I would like to add two thoughts. First, it is really hard to be positive when you are in significant pain or to see beyond the now. See if pain could not be a little more aggressively addressed–perhaps with neurontin (gabapentin). Second, it is important to know that many antidepressants help with pain even at doses that are below what is expected for activity as an antidepressant and more rapidly than expected for antidepressant effect. These are medicines designed to work on nerves (the brain is the most awesome collection of these) and many medicines work in more than one way (this can be a great benefit!). Sometimes it helps “tough guys” to think about this part of the use of these medicines especially as many of us have been engrained that we are supposed to solve all the problems in our life without psychological support (by medicines or talking). i am not saying that is the way it should be, but it is the way that many people think about depression. Elavil is one of the most commonly used antidepressants for “neuropathic” pain found in the feet (and hands), but there are others. Elavil helps pain, depression, and sleep through its action on nerves.
Tell him also that there are a lot of other people out here that are rooting for him and that would like to gently remind him of how very blessed you all are to share so much love. Perhaps you could take a picture of all of you together hugging each other or sharing a “thumbs up” and tape it where your dad can really easily see it–even on the handrail of the bed. Love and the people you share life with are the most important aspects of living.
With hope for cure of these diseases.
AnonymousOctober 22, 2007 at 2:39 pm
I am new to GBS. A couple of weeks ago my son, turned 34 in the hospital, just woke up one morning paralyzed from the neck down. The Dr.’s say he caught this from a stomach virus. It is a very scary thing! From all the reading and research I have done I believe my son has so far been been a little, luckier if that is the right word to use, than most. Of course it did not help that he had also been bit by a spider and later in the hospital developed MRSA. He went from worse to worse in one week then leveled off a week. He is in PT right now. 6 to 7 days a week sometime 5 to 6 hours a day. Also the family helps to stretch his legs and turn him over etc. I believe my son has a great family and a lot of friends and a lot of prayers to help. There is always a family member with him. Luckily he did not have to be on a ventilator, but it came real close. He gets depressed and has horrible panic attacks. His blood pressure drops very low and he throws up. He had developed a bladder infection from the catheter but has it under control. From Sept. 23, 2007 he has forced himself to get well. He can now move his shoulders, move his arms below his elbow, lift his leg enough to turn over and stood up for 30 seconds. I know he still has a long way to go but he says he will walk in 4 weeks even if he has to be helped in some way. But I believe having family and friends that think very positively in A LOT keeps his mind positive. All of the family pitches in. We move his legs for him until our backs and arms ache but he would never know and if we want to cry we go where he cannot see. I will add everyone here to our prayer lists. There are many. I did not use to believe in prayer but he sure is getting better quicklly. We know he may never be “normal” but we have never been a normal family in the first place. Thanks for listening.
AnonymousOctober 25, 2007 at 11:08 pm
I also had GBS twice…once in 86 and the second time a year ago. Mine was also much worse the second time. I was wondering why you got it? I did not get any flu shots or immunizations, no flu or stomach ailments…the only thing that was extreme was the stress in my life. Stress is not listed for causing GBS but I think down the road they will realize that it contributes to it. Otherwise why would I have gotten it twice during the major stresses of my life?
AnonymousOctober 26, 2007 at 10:13 am
I just wanted to give an update on my dad cause I haven’t posted anything since I said that my dad was talking about giving up and a GBS recovered patient was going to visit with him. Anyways, daddy was tired on Saturday when she got there and really didn’t want to speak, but listened as the family talked to her and asked questions and she also showed us a DVD about the GBS which was very resourceful and interesting so I bought it from her. It is good to have all of you as support, but for my dad it was good to actually here it coming from the horses mouth if you know what I mean. He is doing better with breathing on his own, but he was hellucinating a little on Wednsday. He told me to take his belt off of his pants and I told him that he didn’t have pants and he insisted that he did until I picked up his leg and then he said well take the belt off my shorts so I touched his leg at the top and said no you don’t can’t you feel my hand? He said take the cover off and I said no then I will see your naked body. Finally, he gave up. His legs are getting stronger and my arms are building more muscle from the physical therapy we do with his legs. I told I was going to have solid rock arms by the time he leaves there, he just smiled. I have been reading the book “Darkness is not Dark recovering from GBS” and it is a wife telling the story of her husband having it and recovering. I showed my husband some of the phrases that she speaks about the things that would happen to him. He said that’s crazy it’s almost like she is writing the book about my dad. Since all this has happened I think about all the things that occured when I was growing up that were just little things to me before and now they have become a big part of my memories. I talked to my dad sometimes and tell him “Daddy do you remember when we used to do this or do you remember the time, etc….
He smiles and I think he actually thinks about it. Now I have a few questions and want a little advice, please.
[B]QUESTIONS????[/B] I have been told 2 different things about handling my dad when he hellucinates. One was to go along with him and then the other was bring him back especially when he’s not on medication that will make him hellucinate so what are your thoughts?
Since my dad has been in the hospital he has had one plasma pheresis. It has been brought to my attention several times to inquire about the IVIG. What exactly does it do and should I inquire about it?
I look forward to hearing some of your thoughts and suggestions.
AnonymousOctober 26, 2007 at 9:29 pm
Has he been checked recently for an uti? Utis can cause hallucinations. Thats where I would start. IVIG will do the same as pp, it stops the progression of nerve damage. It sounds like he is past that stage and into the recovery stage. You might want to have him checked for depression, he is showing all signs of it, the antidepressants can also work on pain as well as depression. Keep up the positive attitudes and Your Dad should be able to get off the vent in no time. Recovery is always better at home, where the patient feels soo much more comfortable and alive. Take care.
AnonymousOctober 27, 2007 at 11:55 am
The first time when I got GBS in college, I had a cold for 2 weeks and was probably run down.
The second time (last October), I think I can agree with you that it was activated by stress.
I have a follow-up vist with my neurologist in the next few weeks, so I’ll ask his opinion on that issue.
I have found it comforting to read the various posts on the site and “listen” to others who have gone through what I went through. You can try to explain it to others, but they cannot really relate.
AnonymousOctober 27, 2007 at 12:07 pm
The nurses I had in ICU told my family that my hallucinating was common to those who are in ICU for a long time. I was eventually given antidepression medication.
This is a year later and I can actually remember a number of the hallucinations that I had & I discussed them with my family. Some were funny and others were quite the opposite. While I was having them, my children were upset, until they were told it was “normal”. I think they were told it was ICU syndrome.
As I began recovery my family always told me to keep this in mind:
“Don’t project where you are going, think of how far you have come.”
Good luck with your dad.
AnonymousOctober 27, 2007 at 11:59 pm
Quote: I have been told 2 different things about handling my dad when he hellucinates. One was to go along with him and then the other was bring him back especially when he’s not on medication that will make him hellucinate so what are your thoughts?
It seems to me the best thing with hallucinations is to lead with your heart. If something is frightening to your Dad, reassure him about it. If something is important to correct (for whatever reason), do it with love or laughter by redirecting him not really directly telling him he is wrong, just that things are a little different. If something is not important, ignore it and talk about something else.
Personally, I have had some experience with my mother. She was not hallucinating, but had a brain tumor in a place that took away her knowledge of one side of her body, so she could not recognize that side was not working right. After the tumor was removed, if was like a bad stroke with no ability to feel or use one side of her body as well as no knowledge that that side was even there. She could not understand why she could not walk any more and would confuse my hand with hers because she could not feel or “know” that her hand was there. When she asked why she could not longer walk, which she did many, many times a day, I would tell her that her left side was not working so well right now. this helped her a little while because it explained temporarily why she could not walk and that we were with her and the “right now” helped her to know it might get better. This is not exactly the same as hallucinations, but it was also a challenge because her “reality” of the left side was erased.
Tell your dad a lot that you love him and talk about your day and his progress. As noted, a lot of people have trouble with long or intense hospitalizations and can hallucinate because of this. Helping your dad to think about past activities and how important he is in your famlies lives will help reorientate him.
With hope for cure of these diseases.
AnonymousOctober 29, 2007 at 9:03 pm
First, when I read what you said about the belt, I remembered that my fiance Ben always complained that he felt like there was a tight band gripping around his waist, and he hated the feeling of it. I wonder if your dad has the same feeling, and maybe he thinks he’s wearing a belt?
Second, Ben did a lot of hallucinating in CCU too, but I didn’t know it at the time because it was mostly with nightmares. Ben was in a medically-induced coma, so he couldn’t really communicate his hallucinations with the rest of us. I’ve read it’s very common in GBS though, but I’d take Cheryl’s suggestion and just ask to have him tested anyway just to be sure.
Good luck with everything! I’m glad that liaison was able to come out and visit you!
AnonymousOctober 30, 2007 at 10:03 am
I talked to the nurse last night because my dad was hallucinating again but more now. He was looking at the ceiling as if he was talking to someone. When I first walked in the room he was just staring at the ceiling without blinking and until I kissed him that’s when he looked at me. I did ask the nurse if he could check in his chart about him getting on anti-depressents because I asked about it about a week ago. He said he would check and also he heard the doctors talking with someone from the Mental Health staff about getting him on some medication that would help him. I made sure that he knew my concern about just putting him on any medication and said that he probably needs to be evaluated by a phsychologist or someone that can do a close and detailed evaluation because I’m sure there is a certain kind of medicine that what fit perfectly with what my dad is experiencing, right?? I haven’t ever heard of Utis, do I need to ask about this as well and I will research of what it is also. I did start talking to him a little about what’s going on outside and especially when he would start hallucinating so I could try to bring him back to me it worked some. Anyways, I told him that I’m going out of town for work for 4 days starting Monday Nov 5th and he just looked at me and shook his head yes. It seems that the closer and closer it gets to that day the more sad I get because I see my dad 5 times a week now and I’m going to have to miss 4 days of seeing him. My husband told me to just tell them that I can’t go, easier said than done, I’m the main person in this project so I can’t do that. I know God is going to give me the strength because he has through all of this so far. Also, before my dad got sick we would talk on the phone about good and bad things going on in each others life and he would tell me you should really think about getting into Church and I told him I will but when I’m ready I don’t want to be forced or pressured. Anyways, I went to Church this past Sunday for the first time in 15yrs since the last time me and my sister went with him and the 2nd song they sang from the hymm book was a song that my dad had gotten up in front of the congregation and sang when we were kids (Victory in Jesus) and I had tears in my eyes wishing that I had a pair of sunglasses about that time. Anyways, after Church I went to the hospital and told my dad I went to Church and he shook his head as if he was proud of me and I also asked him if he remembered singing that song and he said yes with a look of happiness in his face. Anyways, I don’t know about others that are family members of someone that has had GBS, but I tell you this has changed me and my whole way of looking at life and it’s sad that it took this to happen but it happened for a reason. I had to vent a little so I’m finished now and I just want to tell everyone thank you for everything and with this support group and the man above we can get through this.
Thanks for your support,
AnonymousOctober 30, 2007 at 10:14 am
I can remember lots of hallucinations when I was in icu. They were very vivid. Once I got to where I could breath on my own and they took me off alot of the pain meds I got better about the hallucinations. My wife used to be able to snap me out it when she saw I was having them.
gbs april 2007
AnonymousOctober 30, 2007 at 11:45 am
I went through my second bout of GBS last October through Jan ’07. While in ICU, I too had halluciantions that I can still remember a year later. The nurses told my family this was called ICU syndrome, which occurs to some who are in ICU for any length of time combined with the medication that is taken. I was eventually given an antidepressant.
The family gets to go home while the patient in left in basically one spot alone with their thoughts.
During my recovery, I tended to project where I was going (am I going to be wheelchair bound?). My family kept telling me to focus on where I was and how far I had come in the recovery process, rather than worry about what the future would hold. They were right, but it is sometimes difficult to accept.
AnonymousOctober 30, 2007 at 7:58 pm
You keep hanging in there. Sounds like you’re doing an awesome job, and I know you hate to leave your father, but hopefully your sister will be able to be there for him in your absence. Your church/song story is beautiful! Thank you for sharing!
AnonymousOctober 31, 2007 at 8:34 am
Hi Sabrina, A psychologist would be a good thing. They make all kinds of meds for all types of depression, and they will also help your Dad’s pain at the same time. A uti is a urinary tract infection-it often causes hallucinations when not caught in the beginning. Ask for a culture to be done on his urine, its a fast and easy test and you would know the results in less than 24 hrs usually. While you are out of town is there a chance that you could call your Dad every day-for your sake as well as his? It would put your mind at ease and it would mean the world to your Dad. My family members did that, some live out of town. Just call the nurses’ station and they can give you updates and put you through to your Dad’s phone-they will even hold the phone for him while he talks to you, if needed. Please don’t stress out over your trip, you need to keep your life as normal as you can, your Dad wouldn’t want it any other way. Take Care.
AnonymousNovember 1, 2007 at 6:06 pm
I went to see my dad last night after work and he slept the whole time. The only time he opened his eyes was when I kissed him and he kept blinking them and then told me to open his right so I held it open for a sec and then he closed them back and I asked him if his eyes were hurting he shook his head no they were just tired. Anyways, I told him that he needs to let us or the doctor know if he feels that he can’t open them because they could become paralyzed. In the case that someone is having problems with their eyes is there anything that can be done to prevent them from that happening? I also asked the doctor to do a urine cultural to be on the safe side because I heard that UTI’s can cause hallucinations and he has been doing that more lately. I also asked the doctor to check into someone from the physciatrics to come and evaluate him and maybe getting him on some medication that will help with his depression as well as the pain that he may have. Anyways, he just slept for the most part and I stood there for a bit and then talked to the doctors and then left. I really hate leaving my dad and especially seeing him this way. God, please give me the strength and he is because he brought me to all you!!!
AnonymousNovember 1, 2007 at 9:37 pm
When I was in ICU, sleep was a welcome thing. While awake numerous “worries” raced through my head. Since I had GBS before, I had an idea what may or may not happen “down the road”. As I have “said” in past postings, I came to realize that, because of being in ICU for an extended period of time combined with the meds, hallucinating is “normal”, especially if you are on morphine for the pain.
Clearly you have a close relationship with your dad. As a father of four adult children, I wanted them to go about their lives , because standing by my side, while comforting, was not going to change my situation. I knew that they had responsibilities in the work place and I let them know that I was Ok for them to visit when they could. I knew they wanted to be by my side, but I set their minds at ease by letting them know that they had lives and that I understood that they would visit when they could. Again I had the “luxury” of being in my situation before and mentally I felt that eventually I would be OK.
Your dad does not have the same frame of reference. Former GBS patient can tell him that he may be OK down the road, but it may not convince him.
If you need to go on a business trip…go. Call in and see how your dad is doing. I would hope that he would understand that you have confidence that, when you return from the trip, you would see him again and he would have made some progress. If you don’t go, what message does that send? You want to stay because you think the end is at hand?
AnonymousNovember 1, 2007 at 9:48 pm
After I come home after nine weeks in the hospital, i slept 20 hrs/day too! You don’t get any rest in a hospital. There is always someone in the hall rolling carts up and down the hall. Nurses coming in to give medication every few hours and aides coming in to take your vitals. Respritory sending in someone to chech the oxygen levels and if you need suction or anything. Meals and snacks are passed out all day long. Magazines, prayers, friendship circle volunteers and the cleaning people. The guy that comes in to check for any machines that are being rented on your floor. People that need a payment for the tv or someone that come to help you fill out your menu for the next day. Not to mention all the bells, whistles and hornes that go off for various reasons all day and night long. Telephones ringing at the nurses station. Laughter in the hall. Someone dropping a bed pan or another patient calling for the nurse! People from the laundry bringing up clean sheets and Doctors saying Hello to each other as they pass in the halls. Shift changes are noisy as they up date each other for each patient! 24/7 it gets old after the first night of no sleep! Did I mention the occasional fire drill with the doors all slamming shut or the non stop ambulances arriving at the emergency room? If your lucky enough to be on the other side of the building from the helicopter pad you hear them circling around the building just to make sure everyone is awake! Oh I think I forgot to mention the bell on the elevator as it gets to your floor and the people that think they are “quietly” running down the staircase! The alarm on the IV bag that is either done or stopped dripping. The intercom that is used to call a nurse or doctor to a certain room. The different ring tones to all the cell phones that are not to be used in that floor of the hospital. City traffic and the back up warning on the garabage truck. The trains that blow their whistles for each railroad crossing thru the town. The tug boats that signaled each river boats that passed. I thought they used radios? Well while in the hospital I was lucky enough that they were remodeling the whole floor above me and sounded like huge termites all day long drilling thru the walls. The only time I had total silence was when I was finally able to sit in my bed that folded into a high chair. I was eating carrots and peas and was eager to push them into my mouth. Enjoying the fact that I could now do that by myself. Listening to the tv. I tried to move the tray on the table and off it went off the edge. My uncoordinated reflexes slammed my arm down across the tray to stop it from going off the table. Like a see saw that move made the heavy charger plate and my heavy resturant style plate go sailing. GONE was the pease and quiet. Now in the hall I could hear the whole floor go into search mode for what made that noise. I was not able to talk so I just sat there till someone passed my door as I waved for clean up! Everyone charged into my room and started to clean up the carrots and peas. Jokes and laughter replaced the silence. Boy do I appreciate my quiet home now! Dogs barking and traffic and kids yelling. I can sleep thru it all now! Not even the telephone can wake me up! When I get tired my eye lid still is the first tell tale sign that I am getting really tired! I am sure in the hospital they have told your Dad that if he wants to sleep he should have went to a hotel! 😮 Give him a hug from us all! HE DESERVES IT!
AnonymousNovember 1, 2007 at 10:08 pm
I remember being so exhausted at times (and now still) that I just couldnt open my eyes, regardless of how much I wanted to. Everything Kit said, and I cant remember if she mentioned the doctors poking and proding, and the pt’s who do passive excercises that exhausts one even more. Hospitals are just not a good place to get rest, and even though your eyes are closed, often your brain is going a mile a minute – but boy, to keep those eyes open, well thats next to impossible.
Sometimes just holding the patients hand, telling them that you are there and they dont have to speak, and not expecting them to be awake when you are there, is often for the best
AnonymousNovember 2, 2007 at 10:59 am
Thanks for your reply. You really had tears come down my face because you actually said that perfectly the way my dad has said and would have said. It’s amazing how someone can touch your heart, say the right thing and you don’t even know them and they’re probably even way across the world. I bet you are an awesome father just like mine as well.
Thanks so much for your encouragement,
AnonymousNovember 2, 2007 at 11:41 am
Thanks for all of your feedback. This really helps. Kit you should write a poem about being in the hospital. I never looked at it the way you explained, but now that I know it makes alot of sense. I guess I will just continue standing there and holding his hand. I do feel a little better about going out of town now because my husband told me last night [B]”I wanted to surprise you but I can’t because I know you’re so not wanting to go on this trip and I don’t want you to worry, but I’m going to the hospital on the days that you normally go and your sister is going to help with the kids and I will call you so maybe I can put the phone to your dad’s ear so that you can tell him what you want to say”. [/B]That just made my night. Anyways, all of you are awesome!!!
AnonymousNovember 2, 2007 at 9:05 pm
Oh I must not have mentioned I don’t write poems and only type long messages on this forum! I stopped saying I was sorry for a long post shortly after I joined the forum.
I was one of the lucky ones my eyes were paralized WIDE OPEN! I was able to tell if it was day or night. I could look out my window to see if it was a sunny day or cloudy. All I could see was the sky! I was excited because I was on the eleventh floor with a penthouse view! I was minutes from downtown and the three rivers were below me. I was minutes from the stadium but had to setting for watching the football games on the tv. I had double vision so I mainly listened to them talk about the weather at the stadium and watch for snow flurries to start outside my window. I could not read either. So sensetive to a breeze I could tell when someone walked past the foot of my bed the breeze woke me up! It was a game we played to see if they could sneak into my room without waking the “Princess”! Very seldom happened! You will find that we will remember things from time to time and post them and then that reminds others they had the same thing. Everyone’s recovery is different by the degree and the time frame. You just have to be patient to see what residuals that GBS leave your body to remember it by. Yep this is what I looked like for many weeks! 😮 I did not even recognize myself in the mirror. People would come in and look at me and raise their eye browls. I wanted to think of a joke about that but still have not found one that reminds them of how stupid that looked to me! But I understand it! I would have hated to see what they did if they thought I was in pain!! 😮 See what I mean about the long posts! BTW I am able to type over 100 wpm but the GBS did not help the spelling errors!
AnonymousNovember 11, 2007 at 7:29 pm
Like lots of other on this site, my wife/caregiver and I began going back to church as a direct result of my GBS experience. You’re right, it’s sad that it takes that kind of wake-up call, but often it does.
I hope no one will think I’m selling here, but I wrote a book and created a website about my experience. The website is called gbsnightmare.com. It tells some of the story and promotes the book. Please check it out.
AnonymousNovember 11, 2007 at 9:56 pm
Thanks for your kind words.
When I finally was released from the hospital after 78 days, my children were able to “fill in the blanks” about my stay, especially incidents that occured when I was in ICU. We could laugh at some of the hallucination I had, though they weren’t funny at the time.
While in ICU, I could only blink my eyes, so the kids would go through the alphabet and I would blink when they got to the letter I wanted them to write down. They showed me the notebook that they used to copy down the messages I was trying to convey, some of those were also quite funny considering the circumstanses under which they were dictated.
When your dad recovers (we are all praying for that), he may be looking to you to fill in his “blanks”, so keep notes.
Hopefully when you return from your trip, you will see some improvement.
AnonymousNovember 19, 2007 at 3:41 pm
Well, I’m sorry I haven’t put an update in a while just very busy with work, at home and my dad. Anyways, I know the last time I posted something was right before I went out of town. I left on Monday and found out Monday evening that my dad was having the surgery to insert the feeding tube through his stomach on Tuesday. Well my sister was up there bright and earlier on that morning and let me talk to him before he back for surgery. Well, all went well. Those 4 days that I was gone my sister, aunt and grandma said that he was hallucinating really bad. Well, I went straight to the hospital with my sister as soon as i got back to Dallas and he was hallucinating very little compared to what he was earlier and throughout the week according to my sister. I talked to the doctor again and he put my dad on Haldol for the hallucinations, but it seems that he is still doing it and sometimes more now than before. This past Friday was his birthday and the family was all up there to see him, give him balloons and show him the gifts that we got for him. He was happy, but you could tell he was at times just putting on a fake smile for us. Me and my sister made him a blanket with pictures of with me, her and him, his grandkids and even his dogs and he would just stare at it. He was still hallucinating and the next day he didn’t remember all of us being there. Anyways, yesterday was a very, very bad day. OMG, my dad was so mean, cussing at me, telling me to get him out of the bed and alot of other things he was seeing things that wasn’t there. the worst part about it was my 14yr old daughter was there. She has epilepsy and is delayed a few years in her age so she understands some of what her papa is going through but still has a lot of questions. Anyways, she witnessed everything. The RT deflated his balloon in his trach and he just went on telling me it was my fault, that he confided in me and my sister and we did this to him, etc… Well, I left there crying and when we got to the car I asked my daughter if she was okay and I heard silence then a loud cry. I told her that he didn’t mean anything and he didn’t know what he was talking about. I didn’t know what else to say because I was hurt and crying myself. She asked my husband when she got home “has anyone that you love so much hurt you and why would they” he explained to her about her papa to where she could understand better and she said my papa has never been like that and he hurt my mommy really bad and me too. Well later on my sister went up there and he didn’t remember seeing me or talking to me. I guess that puts me a little bit more at ease. You know people tell you not to take that to heart and it’s easier said. I know he didn’t mean it and I don’t take it to heart but it still hurts hearing him talk like that and seeing him like that. Well, he is still in ICU on the ventilator, trach, catheter and feeding tube. The doctor told us on Friday that they haven’t seen much improvement and it’s going on 3 months that he has been in ICU. They are going to do the nerve testing tomorrow and then the doctors will get with Neurology to see if the Plasma Pheresis will be good to do on him again. Please tell me any suggestions or feedback that anyone has about the medication, the hallucinations, maybe even getting another doctor or someone from somewhere else to go in and give us a second opinion. I don’t know what to do anymore. This feels like a nightmare to me that I wish I could wake up from.
AnonymousNovember 20, 2007 at 8:09 am
Sabrina, Can they take him off the Haldol? Maybe he is having a bad reaction to it, might be the first thing to try. Stay positive, He will get better, 3 mos is just a drop in the bucket, Don’t give up hope and don’t let the drs do it either. Halucinations are hard on everybody, they seem real to the patient and that makes it hard to accept for the family. He is still your Dad inside, just keep that in mind. I wouldn’t take your daughter in to see Papa until he is over the halucinations, it could cause more problems at home than you need right now. Stay positive with your daughter, be honest with her about the situation. My son has delays as well, we can’t get anything past him. Give your Dad my Best, and a Big Hug! You All are in My thoughts and Prayers.
AnonymousNovember 21, 2007 at 11:21 am
My dad was taken off the Haldol on Monday and when I went that evening he was doing pretty good. He talked to me as if nothing happened which was good because I didn’t want to go through what happened on Sunday again or even talk about it. The nuerologist was suppose to do the nerve test on Tuesday and actually was suppose to be done over a week ago and they postponed it again. What can I do? they said once they do that they will be able to determine if it would be worth doing another plasma pherisis. I’m at wits end with these doctor!!! Anyways, I’m waiting on the doctor to call me back so I can ask her why it wasn’t done yesterday, why does the neurologist keep postponing it and when is it going to be done because if it doesn’t get done today then we will have to wait until after the holidays for anything to get done. I’m not happy about that at all.
AnonymousNovember 21, 2007 at 7:38 pm
I am glad you decided to go on your trip because you need to continue to do what is “normal” in your life.
Having said that, you and anyone else who visits your dad, get to go home and interact with others and experience life. Your dad on the other hand doesn’t have that option. He is not only trapped in his body, but he is trapped in the finite environment of his cubicle in ICU. I didn’t realize that he has been there for 3 months. I was in ICU for about a month. Try putting yourself in your father’s place and picture yourself being stuck in that one room, when all you want to do is somehow get up and go home to your own bed. I had GBS twice. The first time I had it, Iwas in college and I remember laying in the bed in ICU counting the holes in the ceiling tile and trying to calculate the of total number of holes in the entire cubicle!
I’ve posted to you in the past that hallucinations are “normal” for patiients who are in ICU for any length of time. They even call it ICU syndrome. It’s a combination of being so alone with your thoughts combined with the powerful drugs your dad is taking. Unfortunately, it is very hard on the family. I was in ICU for last Thanksgiving and my family came to visit. The parade was on TV and I was having an hallucination (yes I remember it even now) that there little men who kept putting piano like wire around me so that I couldn’t lift my arms. I could see that my children (all over 21) were quite upset, yet that hallucination was quite real to me.
Please don’t be upset about what your dad says to you (easy for me to say he’s not my dad and I’m not in your position) because he doesn’t mean it. Your have to realize, after 3 months, he must be incredible frustrated ( I know I would be and I had been through it before ).
I don’t know how much the former GBS patient who visited your dad was able to help you, but if you would like to talk on the phone, please feel free to send me a private message & I will give you my telephone number. As I told you in the past, I have 4 grown children (22-30 years old) who were there for me whenever they could, so I think I have an understanding of what you are going through.
Best regards & try to enjoy Thanksgiving with your husband and your children
AnonymousNovember 21, 2007 at 10:07 pm
the ncv is for the docs to see how your dad is doing. a better gauge is how your dad feels he is doing. if he is making any improvement, he’s doing fine & the ncv itself will not help him. so pls do not worry. improvement or the lack of is what you look for. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousNovember 21, 2007 at 10:54 pm
sabrina there is no way we could have prepared you for this but it is very common. It is the body’s way or the brains way of dealing with any pain. The feeding tube was tramatic for the body to go thru and with the nerveous system being compromized you are going to see alot of things that are hard to deal with. I went thru the same deal and I had Halucinations for two days. They were keeping me comfortable with Morphine and that caused the day terrors and the worse nightmares. At one point I remember asking my family to call 911 and take me to the nearby hospital. I remember hearing some nerveous chuckles. Most of all I could hear the fear in my husbands voice and the determination in my Son’s voice to make me understand that was not an option. The hard part for me was that I had two dreams over and over and over. The mind is a complicated machine and the way it deals with illness and trauma is different for every person but the stress, fear and the hurt it puts on the family is enormous. There should have been some staff at the hospital to explain this to you. ICU is no place for children. I am sorry that your daughter had to experience that, but it will make her stronger when she realizes that that whole experience was your Father suffering a dream that seemed very real to him. I was so frustrated having the same dreams over and over and what was happening to me was very upsetting. I know the staff of the hospital was glad when I woke up. I know for a few days I looked at them like you are not my friends here. I woke up confused until all trust come back and the confusion disappeared. It was like living the Wizard of Oz…..those people were in my dream…..I was talking to them and they were talking to me but what I seen them doing was not real. Seemed real to me! Just keep talking to him and walk out of the room if he seems to be confused or wants to fight. He does not need to stress out any more whether the problem is from his attitude or from drugs. Do like you did and discuss it with the staff. Remember they see this all the time. Think how heart breaking that is for them to see someone going thru this. They are special people. By the way I never did have a nerve conduction test once they seen me start to improve they did not even bother to do it. They just went by what I was telling them. Even now I have some areas that are numb but they function. Muscles are strong, movement is good. I just have good days and bad days where things feel different and I can not explain how they feel. Sometimes it is like holding on to the sweeper too long and my hand goes numb but the feeling does return in a few days. Other times it itches or burns like it is hot or it burns like it is cold. I have always taken those changes as good signs of the nerves healing. Changes are good signs. It shows the body is changing as it heals. Remember to see the possitive part of this and not dwell on the negative. As soon as you can take pictures of your Father smiling and show them to your Daughter. Give her one of the photos to keep. Show her that he is feeling better! Soon he will want to see her, but give that some time. Everyone is right what you are seening is not your Dad. It is his brain trying to struggle to regain control of his body. Signals are getting so double crossed. We feel your frustrating! Be there for your family and give them lots of hugs that is the best therapy when things are hard to understand. Communicate with the Doctors they have a plan that they might change from day to day. They give you the options but have reasons for changing their minds. Keep us posted!
AnonymousNovember 22, 2007 at 12:01 am
Like everyone else who has posted has said, what your dad is going through is making him into a totally separate and different person. He doesn’t know and will probably not remember what he says to you in those emotional outbursts. The hallucinations, though, now that’s a different story. I can still remember mine. In one of them, I forced the staff to move my bed out into the hallway because the ceiling was about to crash down on me from the construction going on in the floor above me. I also kept seeing a U-Haul truck parked outside my window and would argue with my wife that it was really there. She assured me that it wasn’t, couldn’t be, because we were on the sixth floor! But I continued to see it nonetheless. With her love, support and patience we got through it. Hang in there with your dad. He’ll make it too!
Happy Thanksgiving! Make sure your dad is a part of your thankfulness to God!
AnonymousNovember 27, 2007 at 1:02 pm
Well just an update from my last posting on Wednesday the 21st. My aunt called me and told me the doctor came and talked to her and said the neurologist was reschudling the nerve test for Friday. She also said that they were thinking that what he has might be something else based on a new team of neurologist. I know caught me totally off guard and I was mad by that point thinking how can they let my dad lay there for the last two months waiting for him to progress and then suddenly say they think it might be something else. The doctor told my aunt that she was going to call me. I left work at noon that day and told my aunt to tell her not to call me I was on my way up there and I wanted to talk to her. I got up there and the doctor came in and she explained to me that they were frustrated as well becuase the nuerologist keep rescheduling and they had to work on their time. I told her then I want to talk to the nuerologist because I want to know why they keep postponing this test and they need to know my dad is a critical case as well as their others.There was nothing, according to the doctor, that could be done until that test was performed so that they could start making recommendations and decide where to go next. Anyways, I expressed to her that my dad has been lying their for 2 months and they are just waiting to see what happens well I’m not accepting that anymore. I want something done and soon. Well she said she was going to have the nuerologist meet with me personally to explain. I said okay I also asked her what did she mean that they think he could have something else. Well apparently she didn’t explain herself right the first time. They have been treating him as being in the acute process and the new team of nuerologists said they probably need to be treating him as chronic. My dad told me in the middle of the conversation that that’s enough and I don’t disrespect him, but I turned and looked at him at that point and said no. I just expressed to the doctor that they didn’t understand my frustrations from far and I can’t physically do anything for my dad but I’m going to do everything in my power to make sure that he is taken care of. By the end of the conversation I asked my and aunt and grandma if there was anything else and they both looked and said no I think you summed it up. There was other things that I said but I think you pretty much get my point which I’m sure some of your family members have done the same. Anyways, by the next morning (Thanksgiving) his other doctor called me and said they had started him on steroids (methylprednisolone) for 5 days and that was more treatment for the chronic process and then they would slowly tapper him off of it. Well, me, my husband and my sister spent the day up there with him which he slept most of the day. When he woke up that evening he told the nurse noone came to see me and he assured her that his daughters were there and his brother came up but he slept. Well, I got up there about 10:45am on Friday and someone from the Nuerology department was starting the nerve test and I had to leave. I spoke to the doctor on Saturday and she said that the test showed that there wasn’t that much nerve damage so they think it’s just part of healing process of when he will regain movement. That’s good right?
Anyways, the nuerologist is suppose to meet with me sometime this week to explain and tell me what their plans are and answer any of my questions. Now I just wait. Last night he did really good. No hallucinations and he seemed more like himself again. I really feel that those steroids have helped in some way. One more thing I found out that he has a bed sore on his butt. Well I asked the doctor and nurse to turn him over so me and my sister could see it. It’s small, but I told my sister that we need to request to look at it once a week to make sure they are treating it. So far they have been really good about keeping him off that side as much as possible. Let me know if you have any suggestions or comments or even advice
AnonymousNovember 27, 2007 at 11:54 pm
Sabrina, It sounds like your Dad’s emg came out good. The ‘roids help take the inflammation down. Make sure the nurses stay on top of the bedsore issue. It can cause alot of problems if he isn’t treated well, infections are bad for gbs patients. Bedsores should be avoided with the turning of the patient every 2 hours or sooner. I found the poly in the bed and bedding irritated my skin soo bad that I started using a brought from home cotton sheet under me. It helped. Hugs to You All!
AnonymousDecember 2, 2007 at 6:31 pm
🙂 Well an update on my dad. The doctors took him off the steroids on Tuesday Nov 27th and started him on IVIG the next day until last night he had his last dose. Well on Friday the doctors went in and asked him if he could move certain parts of his body and he would try. They asked him if he could move his shoulders and he did, exciting!!!! We haven’t seen him do that since he first was put on the floor after having the Plasma Pheresis. Well, what do you think about this. My sister said that the therapist that used to go and visit him before he was put into ICU asked him everytime he went to visit if he could move his shoulders and that he told her the reason he asked that was because that was a first sign of recovery. Well I didn’t know if that was true or not. If anyone knows any truth or facts about this please tell me.
AnonymousDecember 11, 2007 at 12:41 pm
Well an update on my dad. The doctors took him off the steroids on Tuesday Nov 27th and started him on IVIG the next day until last night he had his last dose. Well on Friday the doctors went in and asked him if he could move certain parts of his body and he would try. They asked him if he could move his shoulders and he did, exciting!!!! We haven’t seen him do that since he first was put on the floor after having the Plasma Pheresis. Well, what do you think about this? My sister said that the therapist that used to go and visit him before he was put into ICU asked him everytime he went to visit if he could move his shoulders and that he told her the reason he asked that was because that was a first sign of recovery. Well I didn’t know if that was true or not. If anyone knows any truth or facts about this please tell me. Also, he has started moving his hands more and now they are going to continue to give him a dose of the IVIG once a week for a little while since they are seeing progress with this, but the neurologist said that what he has is CIDP rather than the GBS is that something that is very different or do they have a lot in common? Any feedback will help greatly!!!!
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