You have received lots of good advice here from people who have been through this rotten illness. He belonged in hospital for starters with GBS (AIDP). This illness gets worse before it gets better and he must be kept under close observation. I was in intensive care for the first three weeks because they have to watch for complications, like respiratory failure. Even with close observation I got pneumonia after three weeks which laid me up another nine weeks breathing with a ventilator. BUT EVERYONE IS DIFFERENT. My experience is mine alone and I was 11 years older than your husband when I got it. The treatment I received was IVIG and the Plasmapheresis, but the illness rolled over the treatment like a steamroller. There is one thing you must adjust to quickly and that is the fact that there is no quick fix for this illness. Some recover quicker than others.There are mild, ,medium and severe cases of this illness and I was the last one. I pray he is the first one. Some other thoughts:
1. Start asking about a good neurologist. Usually, fellow doctors know the best names.
2. When dealing with people treating your husband, ask if they have treated GBS in the past?
3. Do not allow hm to attempt to get up unassisted to go to the bathroom, etc. Never.
4. Take things a day at a time.
5. Call the GBS Foundation and get the name of a former patient liaison in your area who will act as support for you and your husband. This person will visit your husband as well.
6. Be strong, because the experience for all of us shows that with time you get better – some 70 -80 % make full recovery.
7. Start reviewing your insurance matters. Find out how many rehab days are covered.
8. Carry a pad and pen always for notes you want to review later on. Get the number of the nursing station to check on him while you are away.
9. Establish a relationship with the Social Services Department. Get the name and number of that person as your contact and advisor on different matters like medical coverage, rehab facilities with a good rating, etc.
10. Pace yourself and don’t burn yourself out. A day at a time.
11. Don’t be frightened at the condition in the beginning weeks. The illness runs its initial damage for 3 weeks or so. Everyone is different as to the extent of damage. I could not open the flap of a cell phone and was only able to move a thumb.
12. Most caregivers are good. But watch them all and complain if you see something not right.
13. Read the GBS handbook on this illness – call for it. You will see that recovery can be between 6 months to two years or more as stated in that handbook.
14. Join GBS and get the back issues of the newsletters – my own story is in the DEC 09 issue. Be strong, especially in front of him.

I found that having a 22 year old french live in maid very helpful. 🙂

I had some real bad ones – but was too weak to go after them. And they know that! When I got stronger, the new abusers were decimated by me!

I was on a vent for 9 weeks and weening off takes time. My physical therapy durng that time was bedside. But this business of misdiagnosis is disturbing. Does this patient have an official guardian to act in his behalf? If not get one established. Clear up this diagnosis thing first.
Now, here is the part you need to understand. THIS IS LONG TERM. I was in hospital 70 days with vent, pneumonia, and every other damn thing. After that I spent 50 weeks in rehab. Start speaking with the Medicaid Coordinator at the facility because this illness will probably exceed his rehab days under his insurance. As friends, maintain his personal life, bills, his residence, etc.

I had immediate treatment of IVIG, followed by Plasmapheresis and it did not matter. The attack went right over both treatments like a steamroller. But that is the treatment available right now. Maybe it helps, but it is NOT apparent at the time. You have to wait this out. Gear down and have patience because this can be a long term illness. If you are lucky, you will get out of this sooner than later.

The insurance company is ignorant about the nature of GBS, along with others. It seems the only thing that has plateaued is their brain. Your mother needs professional rehab. Perhaps you can get a Neurologist to get her into rehab. When the insurance money runs out her case will be one for Medicaid. I did not stand for 7 months and it was for a second. I had a year of therapy and went home using a walker. I still use it. Why couldn’t I stand? Because my quad muscles (tops of the thighs) were weak. They had to be built up using a special exercise machine, along with a therapist working the others every day. We are not trained to do this work. Do not let the insurance people dictate. Go to a rehab facility that accepts Medicaid. I paid through the nose from my savings, but then Medicaid assisted under a 6 month program called Chronic Care Nursing Home Assistance. Each state is different, so you will have to find out what is available. The Rehab Nursing Facility has a Medicaid Coordinator and you should talk with them. No matter how loving a family is, they cannot provide professional rehab. If you cannot do any of the above, you will have to be trained by a pro to provide the exercises needed to get her to stand. By the way, we are all different in healing. I cannot wiggle my toes after 19 months. But then again, I never did much wiggling when I was healthy! Remember to tell these insurance idiots that healing from GBS takes 6 months to two years OR MORE. If necessary, you can get a letter from a Neurologist or give them the excerpt from the GBS Handbook. If you choose to fight the insurance people, you will need this support. Meanwhile, take one day at a time. Care for yourself as well.