Have a question for GBS’ers
AnonymousApril 21, 2007 at 7:01 pm
In 1999 my brother in law was stricken with GBS. He was in the hospital for 9 months. He was going to be transferred to a nursing home but he absolutely refused. My father in law brought him home, but made life way to easy for him. My brother in law refused to go to physical therapy. He would tell some he didn’t want his father to take him in the snow, and tell others that he wasn’t up to it. He had a colostomy and a urine catheter (still has both) Now 8 years later he still hasn’t gone to therapy, he still has a colostomy and catheter. He feels “sick” every other day, but if you force the point he gets “better” within a matter of minutes. We thought he couldn’t walk until we happened to catch him moving about without his wheelchair (this was in 2001) He is a large man 450lbs or more so his inability to walk, while I understand he is weak and unstable is more likely due to his weight and his refusal to exercise. He uses his GBS diagnosis whenever he doesn’t want to do something. All this was his business until this past Nov when his father passed away but now this is my problem along with my husbands. He gets depressed or “sick” if we push the point. He will not allow us to go to or talk to his doctor. I know the ER is not happy with him since he goes in once a month to get his catheter changed and they feel it should be off of him or he should handle this himself. Believe me I do feel for my bil, I get so mad when he wants me to get something or do something that he can do with a little effort. I read some of what other’s with GBS have written and it seems so important for some of them to do for themselves with a little help from others. They seem to find hope when they find they can do things and my bil doesn’t even want to try. I know that you can get tired easily or want to give up at times, but I end up feeling used and very unappreciated. We can go on a trip to someplace close or 500 miles away and he prefers to empty his urine bag on the parking lot ground instead of using his walker to go to the bathroom and do this, yet he will use his walker to go to Walmart (then get a riding cart) because he likes to do this. At what point and to how far do I say enough is enough? I don’t want to hurt him because this has been traumatic for him, but I feel that I am enabling him not to get better. I know I cannot force him to get better, nor can I force him to want to try to get better, but I cannot in good faith or my sanity allow him to use me either. I’m scared of making a terrible decision. I’m scared because I do not know how bad he really is vs reality. I know he can do things because I have seen him do them IE walking (with some difficulty) getting his own cokes, using his home bathroom, walking to his room to play video games etc. His weight has gone up probably over 100lbs since this happened. He only eats, drinks cokes and smokes (3 packs a day) and watches TV. He can get to the local market to get his cigs. He used to walk in to get them, but now the girls bring them to the car because they feel sorry for him. I feel like I am going to go crazy if I don’t know what boundaries to set or what boundaries are safe to set. I don’t want him to relapse and be even worse. Please I really need some more advice.
AnonymousApril 21, 2007 at 9:48 pm
I truly understand where you are coming from as a caregiver. So after I have just read your lastest post, I strongly suggest that you stop doing certain things for him. If he can walk to his bedroom with the walker, then he can get his own cookies.Tell your husband that you will no longer be a walking all over mat for his brother and neither should he. There are certain things he can do for himself. As I suggested in my other post to you, tell him that if he doesn’t start to try and help himself, that your husband and you are putting him in a nursing home. Tell him point blank that he needs to go to therapy and that others that were worse then him have gone on to lead productive lives and learned to do things for themselves so they didn’t have to have people do it all for them. Do you take him to the Dr? If you do go in with him and ask that he recommend physical therapy for BIL.
I not saying that he can do alot because I haven’t seen him, but yes he does need to try to do things on his own.
Tough Love is what he needs right now, remember to say “NO” if you are sure he can do it himself.
If this is having a bad affect on your marriage, you had better do something ASAP before it’s to late.
Wishing you luck and sending you Big Hugs
AnonymousApril 21, 2007 at 10:12 pm
wow, I dont know what to say … I can honestly say I have never heard of someone using GBS as an excuse to be lazy, well not to that extent anyway. Yes sometimes we get fatigued and it is nice to have people help us out but in general i think most of us are determined to do as much as we can for ourselves. After being robbed of the most basic functions i think most of us are so relieved to have what functions we have regaibned we wouldnt think of not using them.
Maybe your BIL reached a point some time back where he accepted that this was his fate and it was easier to accept it rather than put in the effort to get better (it can be a long and very hard journey so i guess it is understandable that some people might give up) if i was you i would tell him that you are not prepared to care for him if he is not going to make an effort to care for himself. And i would suggest some counselling would be a good first step as he obviously needs to sort out what his priorities and goals are.
I think he is using his GBS as a free ticket. Sorry if i sound heartless but as you said, he is capable of doing things when he wants to. It is hard to feel sorry for someone when the only things that they do for themself are detrimental to their health anyway ie. smoking, drinking coke, playing video games.
I dont know what i would do in your situation … you obviously know that he is playing on your sympathies but at what point do you say enough is enough, he is family after all. I honestly think you have no reason to feel guilty, you have done a wonderful job taking over from his father (who may have been the one to enable his behaviour as what parent can say no to their child, espeically when they are ill). It sounds like you know exactly what he is doing but just need someone to confirm that it is ok to feel the way you do. I dont think anyone here would be begrudge you for putting you own family first. Good Luck
AnonymousApril 22, 2007 at 12:03 am
First, I would like to say that you are to be commended for seeking help here. Many people would become so frustrated with your situation, they would give up or look for an easy way out.
I found your post in the caretaker section. I am a caretaker of a (young adult) daughter w/cidp, and so cannot answer issues directly related to gbs, but you will find support and understanding here from myself and others as you learn to deal with this new responsibility you have inherited.
A part of the conflict you expressed is fear of relapse – this could happen, but as others have noted, the relapse rate of gbs is very low. From your description of Bil’s daily habits (choices), I would think he has a MUCH GREATER risk of other serious repercussions: heart attack, high blood pressure, stroke, diabetes . . . you get the idea. Bil makes these personal choices (smoking 3 packs a day?!) and you should not feel guilty for his detremental actions. On the other hand, his self-defeating actions could be an indicator of depression. You didn’t mention if this has been considered, but it is often associated with serious/chronic illnesses. That may be an avenue for you and your husband to look into.
Have you thought of inquiring either your health care provider, or a social security case worker for help with family counseling? This could help you and any other family members to deal constructively with the situation. If possible, have a family meeting, with the aim of bringing everyone involved together in a conversation that sets some goals towards a healthy emotional relationship. If Bil refuses to participate, let him know that you need this, and will look into counseling services without him. In time, he may realize the benefits of looking beyound his own needs. I know that sounds harsh, but respect works both ways, and despite the disabilities he is having to deal with, that would be a goal worth persuing. Counseling may have an added benefit of opening doors to past interests Bil had before gbs changed his course in life. He may not be able to fulfill his dream the way he envisioned it, but even volunteering in some small way in a field that interests him can be a big boost to morale.
I could go on, but I’m afraid I’m beginning to ramble. Please invite Bil to become a part of the forum – there is so much love and support here, he has no choice but to benefit from the care and understanding. Please return, yourself, as often as necessary to let us know how things are going.
AnonymousApril 22, 2007 at 8:38 am
This might sound harsh but your Bil needs an attitude re-adjustment. He has gotten into a bad habit of feeling sorry for himself and using his GBS as an excuse. You and hubbie need to sit down and discuss a strategy of how you will deal with Bil from now on so that he knows he can’t play one off the other. Don’t do things for him that you know he can do, even if it takes him a while or it’s a struggle, he has to try. I definitely believe that his lack of recovery is due to his weight and not doing physiotherapy. He’s basically made it even harder than it would’ve been originally because he will be weak from lack of activity. You should try and encourage him to have a look at this forum, maybe it’ll spark him into action. He’s lucky to have such a caring sister 🙂
AnonymousApril 23, 2007 at 3:12 pm
The sad fact is that some people regardless of disability want to get out there and get back to a normal life without having to depend on people. Then you have the group that is more than happy to have everyone wait on them hand and foot because either they are lazy or just pissed off at the world. He is not going to get better sitting around. If he can walk then he needs to walk. He needs to go to rehab and if he refuses then send him off to a nursing home. Tell him he is only going to stay with you if he is going to try to get better which means going to rehab and trying to do things for himself.
AnonymousApril 23, 2007 at 7:19 pm
I agree with the others and am probably just repeating stuff.
If he wants something just say “I cannot get it just yet” and go off elsewhere in the house. If he wants it badly enough, he will get it.
Why not ask the check out operator to stop bringing his cigarettes out to the car – make it a secret thing between you. Believe me, if he wants those cigarettes he will go and get them. If he has to crawl to get them, he will – and IF he crawls, that’s when you know he’s for real. I suspect from what you have said that he will walk in. As a long-time smoker I know.
You could of course feign sickness (just don’t do it too well or you can make what you imagine become true). Try to encourage him to look after you. He may do it simply because of fear that you wil be ‘out of action’ for quite a while. I’m not suggesting that you get a cast on your arm, but – a bad headache, a late night/hangover, a cold etc.
I suspect that just going on at him will simply make him feel hard done by. So, stay on his side – you know, sorry you cannot manage but would he ever do this or that for you? becaue you are unwell or unable to do it.
It might work.
AnonymousMay 5, 2007 at 9:31 pm
Well here I am..better late than never adding my two cents worth. After reading this and giving it much thought I have decided this. FEAR..I wander if he is afraid to get better because then he would be alone. Right now he has attention from a lot of people that he might not have had attention from otherwise. So, let’s say he gets better…maybe even somewhat normal, who would he have in his life on a regular basis almost 24/7..probably very few of the people that he has right now. What kind of social life would he have. Possibly also fear of things being different again. What if I try and it doesn’t work and then what will happen. What if they take the catheter out and i work fine for a little while and then it quits working again and then i have that all over again. The fear of all the what if’s can cause a person to not make any advances in their recovery. Start focusing on the things that he can do and really over exagerate the praises and try to get others secretly involved and then he is getting attention for the positive progress instead of getting attention for the poor poor me behaviors. This is very difficult to do when you are already at the end of your rope but it is worth a try. Good luck and please update us.
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