Newbie: GBS caregiver

    • Anonymous
      June 24, 2006 at 3:34 am

      About 4 weeks ago my neighbor (whom I was spending the night with because she had just brought home from the hospital a special needs foster child) told me that when she washed her hands that they felt “funny”. Later the next morning after the baby went to daycare and I had left for work her feet started to go tingle and she drove to the ER. After 4 hours she was in terrible pain, admitted and given TYLENOL!! She cried the whole night and begged for help. Finally, the neuro doc diagnosed her with GBS and she was given pain meds and it took forever to get her on the right dose to ease all this pain but finally she was getting some relief. Luckily her paralysis only went up mid chest and no life support was needed, but she is very weak in the hands and arms.
      My neighbor is single, has no family close, and over the years has become a member of our family. Today my husband and I moved her to rehab, she didn’t want to ride in the ambulance 😮 can’t say that I blame her!! I got her dressed for the ride and then got her back into her jammies when we got to rehab, unpacked all her stuff and got her settled in.
      When she comes home we will be her caregivers and we have been asked to come and participate with her in therapy so that we can see how to assist her. I am a mixed bottle of emotions I can’t believe this happened to someone so active, so nice and caring ! I can’t begin to imagine what she is feeling! Thanks for letting me rattle on. Dayna

    • Anonymous
      June 24, 2006 at 6:41 am

      Dear Dayna,

      Your neighbor is a very lucky lady to have you and your husband around to help her! GBS is so devastating to all involved, and is a rollercoaster of emotions. This forum is here for all the questions you have, and the support you need.

    • Anonymous
      June 24, 2006 at 12:36 pm

      Dear Dayna
      Welcome to our family. It helps to print out some of the posts and read them to your friend. She needs to know there is hope. Hopefully we have a liason in your area that can also help out. This is a wonderful support group where you can say anything and ask anything and someone will be there to help.

      take care and god bless


      aka: stormy

    • Anonymous
      June 24, 2006 at 5:33 pm


      Ditto Ali and Stormy’s posts. Your neighbor is very lucky to have such good friends.


    • Anonymous
      June 24, 2006 at 6:18 pm

      Hi there,

      I assume she went to inpatient acute rehab? Last about a month? Then back to her place. You will caregive for her at her house, helping? Have I got that right? Either way, you are a saint for stepping up. Does she need to be lifted phisically and needs body hands on stuff, or just help in general, with function? I would advise stongly to go to therapy, and while in a controlled enviroment with help all over, learn and preform everything you will be doing for her. About a week before discharge, do a test. Where you do everything that you will be doing, there, with no nurse assistence or help from the therapists. Duplicate as close as you can, the whole day you will be envolved in. If smooth with no hitches, you’re ready, if not, then there’s time to correct things and get more tips. What happens in a controlled therapy setting, often times doesn’t work so well when you hit the home and are now in an uncontrolled enviroment. Lots of frustration happens pretty quickly in the home after all that. Is she getting any home therapy after this stint?

    • Anonymous
      June 24, 2006 at 6:20 pm

      She is lucky to have you nice neighbors. The same thing happened to me-hands first, then feet, then I couldnt walk. Wishing her a speedy recovery.

    • June 26, 2006 at 8:54 pm

      The therapists will have your friend pretty self sufficient before she goes home. She will have to bathe and dress herself, use the toilet, get up and down from a chair, and up and down stairs if necessary; and walk. They will have her strong enough to stand and prepare a simple meal. This may sound impossible, BUT last September I went to acute rehab barely able to sit up on the side of the bed. Within 5 weeks I was able to do the things described, and was discharged. There was still a lot of work to go, with out patient and on my own at home therapy. Progress is agonizingly slow and she needs all the encouragement you can provide. Just don’t do everything for her.
      A little story – Occupational Therapy is for dressing, bathing, etc.. I would be scheduled for 7AM and I knew that meant I had to dress myself. My hands didn’t work very well and tingled, very poor grip. Feet had not much feeling other than tingling…so you have to put on those tight medical stockings. Well let me tell you….it took for ev errrrr and produced lots of sweat…and no help from the therapist and I hated it and her.. As time went on it got easier as did walking(you don’t want me to go through that), standing, wheel chairing, walkering, shower chairing……It is important to go to therapy to see what she can do and to learn how to help – the therapy belt is a marvel.
      My caregiver was and is my wife(40 years)(This was the for worse part) and she was wonderful and encouraging – you can walk without that walker – yes! I could – and that is the help your friend needs. Not carrying her around and totally pampering. Of course more help will be needed early and you have to learn when and how to back off. Driving or transprtation may be a big issue, the tharapist will teach her how to get in and out of a car, and down the road she may have to be re certfied to drive.
      YOU CAN DO IT!
      We all here are praying for you and your friend.

    • Anonymous
      June 26, 2006 at 11:12 pm

      God bless you both! Thank you for being there for one of our “family”.