Help for family and Mom

    • Anonymous
      February 5, 2008 at 1:16 pm

      If there is anyone with advice or knowledge re: care for 84yr old GBS patient, my family and I would greatly appreciate it!! My Mom was diagnosed in July07 with GBS, received IgG treatment, in the ICU for 6 weeks give or take, transferred to an Acute care facility-used up her Medicare 90 days and since her prgress was not progressive enough, transferred yet again to a Nursing Home-which is not a NURSING home-she has been in and out to the hospital for bladder infections-gone septic, pneumonia, C.Diff and MRSA–My family and I are at witts end, let alone emotional rollar coaster ride that won’t end. My Mom is a fighter, but we cannot get anyone to give her the chance to recover-they have sent her there to die…My Dad stays with her all day, thank goodness he has been there to catch problems….they do not tak e care of her at this home…she fell out of bed in December….still do not know how since she cannot move!!!! I /We are just looking for someone who has experienced GBS in an older patient, may have some insight, etc… anything right now would be a comfort!!! I know that my Mom will probably not die form GBS, but from something else due to her unskilled care. I also know that when my Mom dies, my Dad will be short to follow. My sisters and I need advice and help! Thank you anyone who can shre anything….re: care, Medicare info, doctors?, anything!!!!
      Thankyou! God Bless you all!!
      Shari Gutfeld

    • Anonymous
      February 5, 2008 at 7:50 pm


      I am a liasion for the foundation (Southeast Michigan) and have had CIDP for 4+ years. If I can be of any help please feel free to email me: jerimyschilz at hotmail dot com

      Also where are you located, a liasion from the foundation will come and visit and be a source of help and support for you all.

      Take care.


    • Anonymous
      February 5, 2008 at 9:08 pm

      hi shari & welcome,

      you have learned what we here know. for the most part care out of the hosp is less than the care at the hosp. my best advise is to take her home. if you let us know where you live, someone may know of a good place. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      February 5, 2008 at 9:50 pm

      Shari You need to support your Dad also and don’t let him have to handle all this daily. He also needs a break. Stress can do damage on any age. I am sure he is scared, frustrated and he is being her advocate. You need to notify the facilities that they are the ones that are getting paid for her care and that your Dad is not to be doing things to take care of her. He is there to keep her company and comfortable. I don’t understand why they would assume that someone that is paralized can not move. Babies move all over their cribs and can not crawl. The fact that she is able to move that much is amazing. That takes concentration, strenght and energy. When I was paralized I was able to move too. I used my head/neck to lift my shoulders so slightly as the weight of my head would move me to a new position. Ofcourse I got myself in some pretty uncomfortable positions especially if I used the sheets to slide on. I also would hold myself in a position until I got tired and then gave up and would slide down in the bed. Gravity was my best friend and also my worst enemy. I had someone put a stuffed animal beside my head so it would not flop to the side and I insisted that they put up the side rails of the bed. If I was placed too close to the side of the bed my leg would fall overboard and off I would slide. Your Mom has been thru alot and she is fighting hard. Be possitive and pray that the GBS does reverse and her body starts to heal. Those of us with GBS have learned to be patient….GBS is a very slow process. Give her a big hug and make sure you give your Dad equal time too! All of the ones here love our caregivers and we don’t give them enough credit or status. Without them non of us would have recovered as well as we did.