Advice needed for a caregiver/friend

    • Anonymous
      April 11, 2007 at 1:10 pm

      I am so happy that I found this forum, you are all so brave and strong, a true inspiration.
      A little about my situation. I am a 27 year old female who came to Italy to care for a 35 year old man recovering from GBS. He was in the hospital completely paralyzed for 4 months, after returning from the hospital he started carefully gaining his strength, able to sit in a wheelchair, etc. He then moved to a walker, then a cane and now is walking unaided. It has been one year since he fell ill and he continues to gain strength every day.
      He has a lot of pain daily and has a lot of problems with his hands trembling. I am not a nurse (he did have a full time nurse caring for him until he was able to be more independent) so I don’t know how to help him more than I do. He gets frustrated, his mood changes very very quickly, in an instant he is in a terrible mood. I would do anything to make him happy or make him feel better but he closes up, won’t talk. i am at my wits end, I don’t know what to do for him physically, emotionally, etc.
      He has trouble having a bowel movement as he does not have the muscles to push, I have suggested various high fiber items to eat etc but he doesn’t like the taste of them. He gets angry when he isn’t doing anything then he gets angry when he becomes too tired from doing too much.
      Please, any advice would be helpful. I look forward to finding out more aobut you by readin through the other threads.



    • Anonymous
      April 11, 2007 at 1:57 pm

      Courtney, It is hard and can be furstrating caring for someone with GBS/CIDP But realize you are doing the best that you can. We as people that don’t have this truly don’t understand what the pain is or how the individual is actually feeling. Just continue to care for him and try to make him as comfortable as possible. As far as his bowel movements go maybe he needs a stool softener every 3 days to help him go. Its not good for him to go longer than that as it could cause more problems. Keep your chin up and know your loved for doing the job you are for him. Dawn C.

    • Anonymous
      April 11, 2007 at 2:07 pm

      thank you so much. I appreciate you taking the time to write. I feel so selfish for being upset when he is mean or mad or angry but he can be so difficult. When he won’t tell me how he is feeling it makes it so much worse because I feel like I am walking on eggshells.

    • Anonymous
      April 11, 2007 at 2:16 pm

      Hi Courtney,

      I posted to you in the thread, “The Things I wish They Knew”

      On to the pain, is the Dr giving him anything for the pain. It is the most debilatating pain you can ever imagine. His myelin has been eaten away and that is what protects the nerves. He might even have axonal nerve damage and that is the worst kind. It’s like torture for some patients to be touched, have clothing on or even just a sheet or blanket touching him can cause severe pain. This is going to take time to heal, a long time.

      Most patients do get angry because they cannot do the things they used to before GBS/CIDP. They are tired and in constant pain so that makes them miserable and they don’t want to talk about it or be touched. Leave him be and when he wants to he will tell you how he is feeling.

      In essence you are walking on eggshells not knowing what to do. Just be there and do as he asks you to do for him, no questions, just do it.

      My hubby used to get real nasty when he was having an extremely bad day, it can’t be helped. Just be supportive.

      Take care of yourself so you don’t burn out as a caregiver, believe me it does happen.


    • Anonymous
      April 11, 2007 at 2:23 pm

      Welcome Courtney!

      You have a hard job and I take my hat off to you 🙂 . Having gone through problems with bowels because of weak muscles, I know what your friend is going through. It is sooo important that this gets taken care of. Having to deal with his GBS pain as well as pain caused by becomming impacted is really horrible. Depending on where he is at, the only thing that may help is an enema, and possibly, if this is something that has been going on for a while he should speak to a doctor or nurse about possibly having a ‘bigger’ enema, (I’m sorry I dont quite know how to say this delicately), but one where they have what almost looks like a hose and you are basically flushed out. Sounds awful, and there is a lot of discomfort and obviously some pain, but it is well worth it.

      I think he probably gets angry because he feels that he doesnt have anything worthwhile to offer. He may have been very active, or had a successful career, or whatever it was before coming down with GBS. I often feel like people think I am lazy because of my fatigue, this leads to a whole host of other feelings and ultimately ends up in anger, and I often just snap.

      I’m not sure what the dynamic is between the two of you, and by that i mean, does he treat you as a care giver and do you treat him as a patient …… or is it more of a friend helping a friend? Only reason I ask is because if it is more patient/caregiver relationship, do you ask him to help make dinner, or stir the vegetables, or get the milk, or even maybe going outside to pick one or two flowers, lay the table etc. You may do this already in any case, in which case I have failed horribly in giving you suggestions 😮 (sometimes this is a small way to make him feel he is at least contributing to life). It honestly is a difficult thing to help with. I have said many times that GBS/CIDP patients are in a constant battle with their minds -:eek: well, you know what i mean. We think that mind over matter will help, but it doesnt.

    • Anonymous
      April 11, 2007 at 2:34 pm


      You are in a difficult situation in more ways then one. We as patients with this dreaded disease can be extremely angry at everything if for no other reason then the loss of independence. I admire you for seeking out information. He needs to gain independence as much as possible, sometimes even the smallest things can make a big difference. I felt worthless for a very long time in the beginning, I am sure he is feeling pretty close to the same. He needs you obviously but he also needs to take baby steps towards gaining some independence.

      You don’t mention what medicines he is taking, Neurontin/Gabapentin works for many of us for the nerve pain. Perhaps you could ask his Neuro about it.

      Hang in there and keep coming back, we are happy to help.


    • Anonymous
      April 11, 2007 at 9:15 pm

      Hi Courtney – give yourself a break, girl! Being a caregiver can be the most difficult job in the world. The person you love is helpless, and you can’t fix it. We, as patients, are frustrated because our lives have been completely turned around. Then there is the emotional see-saw that comes with GBS/CIDP. One minute we are tickled about something, the next we are in tears. From what I have read on these posts, we all have to find a way to deal with what has happened to us. You need to read “Things I Wish They Knew” – I told my husband that he needs to read it, too. Does your friend have family or other friends there? You need to have a day or two off to refresh yourself. Don’t feel guilty – you won’t be any help to him if you are sick! Everyone here is always willing to listen, answer questions, or just send a cyber hug! Good luck and good health!

    • Anonymous
      April 11, 2007 at 11:30 pm

      When we go through a chronic illness like GBS or CIDP, like I have, some of us can feel like we have died and we can grieve. I think it would help you understand what your friend is going through if you read about how to handle the GRIEF CYCLE. I’m sure you can do a computer search for the steps of the grief cycle or buy a book.


    • Anonymous
      April 12, 2007 at 4:03 am


      You don’t mention what medicines he is taking, Neurontin/Gabapentin works for many of us for the nerve pain. Perhaps you could ask his Neuro about it.


      I asked him last night what medication he is taking and he said that he is not on any medication. I can’t talk to his doctor because I don’t speak fluent Italian. I know Italy has fantastic medical care, but after reading some stuff here I am wondering if there is more that could be done for him. He has not been to the doctor for a check up or anything since I arrived (in January) that seems like a long time to me after having been through such a big illness.
      I am going to ask him to look at this site with me so we can see if there are other things that he can be doing.
      Does anyone have any recomendations for hand tremors? He is really frustrated with the way his hands shake as it is preventing him from working over a year after becoming ill.

    • Anonymous
      April 12, 2007 at 9:38 am


      I am not sure about the hand tremors since I fortunately didn’t have them. There are many medications that we take with CIDP/GBS typically and they really have improved my quality of life. We are glad you found us, keep coming back. Take care.


      PS-Feel free to email me anytime jerimyschilz at if I can ever be of help.