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!
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
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.
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.
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?