Being a caregiver is hard! You want to do everything you can, and are scared to leave them alone. You don't want to see them in pain or get worse, but don't know what to do about. Let me just say from a caregivers perspective that it is very hard emotionally and mentally.

 

There were lots of problems when Annette was going through her GBS journey. The first big problem was that no one believed Annette and her symptoms. Annette was admitted to the hospital late in the evening, and by the next morning I (her daughter) became her advocate. I was not prepared to take on this role, but if I wouldn't have I don't know what would have happened. When I wasn't there to be her advocate other family members were there in my place. 

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The second problem that because GBS is so rare the doctor's were overlooking her, and thought it was a mental, conversion disorder, or that she was an addict. I understand that both of these things happen, but the way that it was approached by a single doctor started our battle with how they treated Annette (mom). 

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My advice as a caregiver is to advocate for your loved one if they cannot. Push for the right staff, tests, therapy, etc. Ask questions! You will never know the answer until you ask. Do your research, but make sure that it is a reliable source (e.g. medical journals, books, case studies). Work with the case manager to build the best plan. Check out the rehab facility and make sure they are prepared for someone with GBS, as the one Annette went to was not. Watch for changes and consult the doctor.

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The last piece of advice I would like to give is to make sure you are taking care of yourself. Do not feel guilty for leaving for awhile to get some you time. Go for a walk, take a nap, get your hair or nails done, get some non-hospital food, meet with a friend. It doesn't matter what you do, just as long as you don't forget to take care of you.