AnonymousJune 3, 2007 at 11:04 pm
My mom is in hospital right now with GBS. Today she had a very bad day.
We have noticed that her emotions seem to be all over the place and we aren’t sure if it is related to her feeling down because she has lost control of most of her life (her independance) or if it is the drugs that are giving her the mood swings. They are currently reducing her drugs, so we even thought it could be associated with withdrawl.
Do any of you have advice or stories to share about your experiences?
Or,how I can help my mom while she is going through her mood swings?
AnonymousJune 4, 2007 at 7:50 am
When I found out I had GBS my mood changes were out of control. I was trying to accept that I had something that could have taken my life and that at that moment I thought I would be crippled for life and would have to have others do what I could not.
I had IVIG and had no problem with it. When I got home I had to use a walker and this affected how I felt. Your mom is going through faceing things that she feels is the end. You can help her with all the love you and your family have. Care givers are the angels to us. there will be times she will strike out and I did this but I did it because of frustration trying to accept things I could not do anymore. I found this site and it was a blessing. You need to read all you can about GBS. Your mom will recover but it will be slow. Be always postive with her. no matter how little she does. PT is a big part of recovery.it will help the body to start recovery. One thing I did while I was in the hospital and at my bottom. I told God to take me and do anything he wanted to do with me. I found that I started feeling better and did one day at a time. you are in the right place with loads of beautiful people to help. I will keep your mom and you and family in my prayers (Steve)
AnonymousJune 4, 2007 at 8:47 am
Sunnis, is your mom currently on an antidepressant? alot of us take them, some just for the emotional control that is needed. As Steve mentioned being positive helps tremendously. share the information about gbs with your mom, it will give her hope and something to work towards. as with recovery, it will take time and patience to get through this. make sure your mom is not having problems with pain, that in itself is very depressing to deal with. alot of the pain meds are not addictive, pain control is a must. gbs changes a persons’ life in a major way, it also changes those around the patient. things will get better one day at a time. i still have my shower cries-not as many as i had right after my initial episode, but i still have them, i view it as emotional therapy. it works for me everytime. stay positive and take care.
AnonymousJune 4, 2007 at 11:46 am
Welcome to your new family, where we feel what you feel! If you go to the main site at [url]www.gbs-cidp.org[/url] you can order a DVD called “Climbing to Recovery”. This is about recovering from GBS and I think it will help the whole family. Just click on STORE. If you learn all you can, it won’t frighten you and overwhelm you completely. Knowledge can keep the fear at bay.
Come back to your new family here whenever you have questions or need someone to talk to.
AnonymousJune 4, 2007 at 2:50 pm
Hello Sunni. Please let your Mom know you are intouch with many people that have experienced GBS and that it also stands for Getting Better Slowly. We can not say that too often. If you Mom has a busy day and does not get a lot of rest that can cause a bad day. She will learn to listen to her body and know when to rest. This is where a good routine works wonders and she can plan her day to stretch out her energy to finish a day. The damaged nerves are leaking energy and even thinking and eating can tire you out fast. Keep the conversations short and very possitive! Keep the visits from friends and family to just a minium. Read to her will allow her to drift off for a snooze where a conversataion keeps you thinking and alert. Soft favorite music might be something she would enjoy. If she is not too sensitative to being touched a massage with creams might be relaxing. Just see what she wants. If you have someone there all day then make sure they take a break or nap also to allow the support but also to allow the rest. REST is very hard to get in a hospital and with GBS you just are not tired you are fatigued. Cards from friends and family make the days possitive and they stay more possitive. A Journal is handy for when you have many visitors coming they can read her daily progress and will not tire her out asking the same questions over and over. But more important the daily Journal will show her slow progress. That progress no matter how slow is progress and it is very important. As the GBS starts to reverse she will see daily things improve and over a week she will see how much she has improved that week. Later improvements might be measured by months and years. Find out if she has any questions for us! Knowing there is answers out there will really help, because everyone is different daily with all those ups and downs! You are great to be her advocate! We have a lot of respect for our caregivers like you!
AnonymousJune 4, 2007 at 9:44 pm
Thanks for your great support and suggestions. I believe that knowledge is power. My family on the other hand seems to want to bury their heads in the sand right now. So, I am being a bit careful not to overwhelm my parents right now with too much of this great information. Maybe they need more time to come to terms with my mom’s illness.
But, I will keep all this information for them when they are ready to listen.
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