New to GBS and this forum
AnonymousJune 22, 2008 at 8:23 pm
My Mother-In-Law was diagnosed with GBS on May 27, fortunately she didn’t have to be placed on a vent but was in ICU for a week and is now in a Rehab facility. She cannot walk but has pretty good use of her upper body. The doctors keep telling her she will have a full recovery. Everything I read about GBS and some of the posts on this website lead me to believe there are many lingering symptoms that may never go away. I am afraid they are giving her and the family false hope of a full recovery.
She will be living with us after she returns home from rehab because her house is not handicap accessible and does not have air conditioning. My husband and I have only been married about a year and are trying to start a family of our own. It is hard, you all know, we are already feeling very overwhelmed. What will it be like once she comes home with us? What should we prepare for regarding to her home care? Will she need a special diet?
Thanks to all of you who maintain this website, it was comforting to find a place I can go and talk to people in the similar situations.
AnonymousJune 22, 2008 at 11:12 pm
It’s really hard to tell what it will be like when your mother in law comes home. GBS affects everyone differently. No two people end up the same way.
Many people do make good recoveries. Some will have more severe residuals than others. Recovery from GBS is usually a slow one. The biggest thing I can suggest is to set her up in an area where she won’t need to use the stairs.
I can’t imagine trying to start a family of my own & having my mother in law (healthy or not) coming to live with me. Make sure that you and your husband communicate constantly with each other. It might be a good idea to get involved in some kind of counseling now, just so the two of you can make sure that you are on the same page with regards to how life will end up being with his mother added to the home. It was hard on my husband & I when our daughter was diagnosed with GBS then CIDP at 4 years old. Having to deal with illness in any family member can & will put a strain on relationships. I think it’s better to talk about it sooner rather than later & make sure you two have a plan to get through it.
AnonymousJune 23, 2008 at 5:55 pm
Hi Roxy and welcome.
A few things to consider if they are possible.
1. If possible get a homecare nurse for her so that will help lighten the load on you and your husband. Even if it’s just a few days a week, though every day would be ideal obviously. Not sure of her insurance but hopefully that is a possibility.
2. She will have lots of appointments I am assuming, Doctors, rehab etc. See if there is some sort of elderly/disabled transportation available. Again this will help make things easier.
3. See if she can do her rehab at your house with someone coming and working with her. That will make things easier as well.
Those are three things I can think of off-hand that could help. I will add more if I think of any.
AnonymousJune 24, 2008 at 1:51 pm
Thank you for the great advice. Our house is already handicap accessible, one level and a ramp to get in the house. My husband’s brother had cancer and it was set up for him.
I’m a nurse and my husband is a firefighter so we each only have to work about 3 days a week, that will leave us a lot of time to help with her doctor and rehab appt.
I think you’re right about seeing a counselor. At least me, my husband and I communicate well and I know it is VERY hard for him to see his mom like this. His brother died three years ago from cancer. His mom was diagnosed with GBS on the day of his brothers birthday. The house she lives in doesn’t have air conditioning and is in a bit of dis-repair, we pretty much have to build her a new house she can live in once she recovers. All this is soooo overwhelming along with coping with her recovery. Because I am a nurse everyone in the family turns to me to keep up with her medical doctors and know the questions we need to ask. I am just feeling a lot of pressure and have been crying a lot lately from all the stress. I am so blessed to have the background in the medical feild to be able to help her and I am SO happy to help her, she is an absolutly wonderful woman, yet I feel so responsible that I feel like I’m carrying a ton around on my shoulders. Four days after she was diagnosed and in ICU I had a very bad allergic reaction and had to be in the hospital myself then the next week my father had major back surgery and I spent 2 days in the hospital with him. It has been a long few weeks for our family. I don’t know if this is the forum for all this; I just needed to get it off my chest, I don’t know if I need a counselor, I just need someone to vent to. I know you all are dealing with a lot yourselves, how do you deal with all the pressure and stress that goes along with taking care of someone for long term?
AnonymousJune 24, 2008 at 6:33 pm
I just have a few things to add to the suggestions you already have based on caring for my mother when she could no longer walk and on my experiences (thankfully less severe with GBS). It is important for people to still feel independent. It is ALSO important for you and your husband to have some time alone and time away. Sometimes it is assumed by the rest of the family that you will do it all (because you are a nurse or a caring person or young–or whatever excuses there are). Anyway, these are my suggestions. Think early about things that permit independence such as a bedside commode or shower/tub stool. If it is hard for her to get up out of bed, think about a hospital bed with rails to help. Think about a table or stack of small shelves for important things that people would get up and get if they could (kleenex, pens/pencils and paper, books, water, nail file, phone and phone list of important numbers, clock, lipstick, etc).
Encourage her family and friends to come visit. It will help your MIL and you by making life a tiny bit more normal. One of the hard things for me was that I was more isolated after GBS and had no energy to go other places. Suggest that people bring a “picnic” lunch of favorites for her or when she is better take you out in a wheelchair for brief visits out of the house. It is hard because with GBS, life changes so suddenly, there is little time to adjust to it.
One of the hard things for my Dad who was primary caregiver for my mother was the constantness of it all and that he had little time away since we all live far away. It is hard to take care of ANYONE 24/7 even if you are a very caring person. It is worth thinking now about options for time away just to refresh you and your husbands batteries. If you have the only accessible house in the family, maybe someone can come and stay with your MIL a day or two, while you have a little respite time. I understand your MIL is a wonderful person, but it is a change in life that all of you have to adjust to having. I know I wanted as much independence as I could have after getting ill. You can help her and help set the stage for other to help as well, by thinking ahead a little and keep it kind by emphasizing that it is for life-normalization and to help her not get bored and depressed. Friends and family and variety and things to look forward to doing are the best medicine for that.
WithHope for a cure of these diseases
AnonymousJune 24, 2008 at 7:32 pm
Thank you, I didn’t think about some of those things, even though they say she won’t come home for a couple months at least; we are trying to prepare her room at home to be comfortable and welcoming, those are great ideas.
So what you’re saying is that it is okay for us to take some time for ourselves…thank you…I always feel guilty when I think about wanting to get a way for a night or two. I don’t want her to think we are abandoning her or that she is a burden to us. I never thought about getting some of her friends to stay the night.
I know it’s a long road ahead, I am thankful for all of you. I tell my patients about groups related to their diseases or websites they can go to for help, I just never thought I’d need it myself.
Whishing everyone the best,
AnonymousJuly 24, 2008 at 7:17 pm
This forum is for whatever you need it to be. we try to be whatever we need to be for others and to be a big family. Please don’t feel like your imposing because we have all been there and we understand. No question is stupid ever. We are here to help you.
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