Other caregivers experiencing this?
AnonymousAugust 25, 2006 at 8:41 pm
To the other caregivers out there,
I was wondering if anyone else besides me was having trouble coping after going through GBS with your loved one? I sometimes tell Ben–my fiance with GBS–that I’ve been self-diagnosed with having Post Traumatic Stress Disorder. My main symptoms are that I’m having trouble sleeping, I can’t eat unless I’m with Ben, and I don’t feel like people my age (35) can relate to me (or maybe I can no longer relate to them). I used to be lots of fun and have lots of friends, but I don’t feel like hanging out with them anymore because I don’t want to leave Ben’s side except to go to work. He had GBS a year-and-a-half ago, and I feel I should be back to normal now. When will things be normal for me again?
AnonymousAugust 26, 2006 at 11:26 am
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.
AnonymousAugust 28, 2006 at 3:23 pm
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
AnonymousAugust 29, 2006 at 1:12 am
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.
AnonymousSeptember 10, 2006 at 2:34 pm
Thank you all for your responses! Sorry I took so long to read them, but I haven’t been on the forum in a few weeks. I actually took a few days and went to visit my family in Nashville–without Ben! It was my first time in over a year being away from him, but we both made it through, and I, for one, am feeling much better! I’m not ready to leave him again anytime soon, but if something comes up, it’s good knowing that he can make it through without me (and vice versa).
Lynda, I am very over-protective of Ben, but it doesn’t seem to bother him. He actually loves the attention and devotion I show him and makes it very easy for me to want to be around him all the time!
Brandy, thank you for your sweetness! I think everyone on this forum knows how you were there for Frank through thick and thin. I wish we lived close to each other too because I would love to hang out with you and learn how to be a good wife!
Judi, you’ve been very sweet as well, and I appreciate it! You’re about the second or third person who’s told me that life as I knew it would never be the same. When I was home last weekend, I met with two CIDPers and their wives (and one of their 7-year-old sons), and one of the wives told me the exact same thing. That was actually a really great meeting for me because it helps to see other people going through the same things that we’re all going through!
By the way, when I got home, the first thing my family all said to me was that I was too skinny and needed to eat. I didn’t want them to worry about me when I came back to Chicago, so I ate anything and everything that was put in front of me. I’ve been doing it ever since! It’s really not as hard as I thought it would be!
AnonymousJune 19, 2007 at 2:35 am
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.
AnonymousJune 19, 2007 at 2:52 pm
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.
AnonymousJune 28, 2007 at 10:29 pm
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
AnonymousJuly 23, 2007 at 4:29 pm
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.
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