Other caregivers experiencing this?

Hi Shannon,

I don’t know if what you are describing is Post Traumatic Stress Syndrome, but we caregivers certainly do suffer the after shock of our loved ones GBS. I was the same way and believe it or not I still have problems sleeping and eating. In the first year of Frank’s illness, I barely slept because he had to sleep in the living room downstairs and I was upstairs. I was afraid I wouldn’t hear him if he called out to me for help. When we ate, I’d have to watch him like a hawk because he choked on his food constantly. I had a routine set up for him and myself and I still find myself thinking I need to get Frank’s food or meds. Even after the Dr put me on Ambien sleeping pills, I still slept with one eye open for fear that he would get up and fall and I wouldn’t know.

My only suggestion is to try and get out by yourself. We both lost a lot of friends along the way of the GBS/CIDP trail. No one wanted to be with us and it wasn’t a very nice place to be in. I’m thinking that like me you are being over protective like a mother hen. Sometimes it’s good, sometimes it’s bad.
Maybe some counseling would help you cope. I know this isn’t easy. You know you can talk to me anytime. Send a private message or e-mail through the foums if you need me.

Wish we lived closer, I’d come and hang out with you and Ben.

Big Mom Hugs coming your way.

You mentioned being over-protective-is there anything you found annoyed him alot? What did he like best about your care-giving? Sounds like pretty
dumb questions, but one can be overly protective. I want to give love and support without drawing attention to the fact that this is one heck of a crisis

Shannon, dear ~ now that Ben is not so “critical”, your mind and body is begging for a break. That’s normal!! My Hero has been in your shoes for 11 1/2 years and just in the last 6 months has he been able to go “aah”. I’ve seen unexpected changes that my Hospice/Grief training has kick-in and said “normal”:eek: What both Ben and you knew as normal will never be the same again. Even if Ben reaches 100%, you’ve been changed by this experience. Now, you will create/find a new normal. Everyday remind yourself that you want to do this “together”. You fell in love for many reasons and those haven’t changed! 😉 (your big sis talking!)

Yes, I am back from vacation ~ caring for aged parents for 3 weeks and that was a new experience for me! It was a good time; thanks for asking.

what ever you feel sad, the time is running.
I am a nurse, my father got GBS last year.
he had go though life and death.
he is a lucky man, he is nearly fully recovered.
I have done my best, I am pround of things I ‘ve done.

My friends seem to have “lost interest” in my mom’s condition. A lot of them have done a little reading and discovered that GBS is treatable, so they don’t seem to really understand why I’ll just start to cry out of the blue or why I can’t afford to do all the things we normally would do since I have to put aside as much money as I can to fly home to see my mom as often as I can. No one seems to understand how debilitating this is or how long the recovery can take. I am so grateful for this web site- not only for the information, but also to be able to “talk” to people who do understand.

Hi Jenn,

We all have gone through the mill with family and friends who just don’t get GBS/CIDP.

GBS might be treatable, but have you told them there is no cure and that this is a cousin illness to MS? Usually when I would say cousin to MS, they seemed to understand a little bit , but not quite 100% understanding. This is how you find out who you real friends are sweetie.

Take care and don’t worry about other people, if they are so self-absorbed,
then you don’t need them as friends or family either.

Hello everyone I too am dealing with the no shows of support from the ones you thought would be there.I truly like your answer about knowing who the real friends and family are and that the rest don’t matter.I myself find my self crying too at the drop of the hat it is usually in the most embarassing places.I have found out now that I can just say it must be the new mascara and it gives me a chance to deek out and recover.Keep up the smiling I know I have enjoyed all your words of wisdom and just think my battle has only just begun.My spouse has been in icu since March 8 2007 and the docs say he will be along time healing.It is hard to see everyone else going about their lives like nothing is wrong when you are just trying to get thru the day (ie family).Someday they will all understand Thanks again from Ontario Canada

I don’t know why I didn’t get to this post earlier but I know what you mean.
Nate had GBS December of 05, and it has affected me greatly.
He is making good progress now but still has a long way to go before he will be able to walk around unassisted, drive or get his life back.
I have gone thru a whole list of stages with him too.
I still worry that he will get sick again, fall, take too much meds, not be able to do what he needs if I’m not there,etc. I’m sure you know all of them.
My husband and I are going out of town next week for a week and I’m worried about whether or not his brother will be able to get vacation time and be here with him.
He has not found out as yet if he can get the whole week off and that makes me feel very uncomfortable.
Nate cannot be here at night by himself. He cannot do everything like lock up all the doors, take the dogs out, or water the garden and front flower garden.
I know the whole time we are gone I will be worrying about if my younger son is here and if everything is ok, if he is eating good things for him, if he remembered his meds, etc.
I wonder if I will ever not worry about him.
Trudy, natesmom

Shan,

Ben is doing better now, I think you need to look out for yourself too. Please take care of yourself and if I can ever do anything please call me. I know Ben would be the first person to say that you need to take care of you.

Jerimy