What do you do when your loved ones stop caring?

Our loved ones are going through this with us, so they have a stress all their own. It is common for them to go through periods where they act like your wife, but it is horrible for us.

I went through the same thing with my husband, and the only thing that helped was counseling. He doesn’t like to talk about things, so he had alot of little nit-picky things that i did to irritate him. But, he never told me, so i had no idea. That all came out in counseling and it saved our marriage.

He also doesn’t like me to talk to him about my illness. It stresses him out and he doesn’t understand the disease, so it confuses him, too. So, i try not to talk to him about it and that is why i went searching for this website. thank goodness i found it, because i was having a lot of resentment toward my husand, feeling like i should be able to go to him with my problems. This website has helped both of us because i have people to talk to who understand, and he doesn’t come home from work everyday to hear me tell him how miserable i am.

Im new here, so im not sure about this, but, i think there is a section here for loved-ones and care-givers. Maybe your wife could check it out?

Sorry to hear about this Kinney. I know my loved ones seem to tire of hearing about things. BUT, when my husband told me I talked about things too much it really hurt my feelings. My immediate reaction was not to tell him anything and keep it all to myself. With a little more inquiry, I found out it is because he is very frustrated because he can’t do anything for me to make it go away. He doesnt like knowing I am hurting, struggling, scared, etc. because he feels helpless and frustrated that there is nothing he can do for me to make me better. I have memory problems more so now than I ever did…and trust me, I was a scatterbrain (a high school teacher called me absentminded LOL!). I prefer to refer to myself as easily distracted, but whatever. It is strange and frustrating thing to be able to “see” in your head how to say something, do something, who someone is, what something is called but the word(s) won’t come out or the task steps dont seem to get from your head to your hands or arms or fingers or even feet. Meds make it worse from what I have read, but until recently I wasnt on anything. It’s not that she doesnt care about what you are going thru, it could very well be that she too is frustrated and upset that she cant make it better for you. She doesnt know what to do or how to handle her own fear and frustration so she lashes out. I could be way off, but it might be worth trying to talk to her about how she is feeling and how you two can work together thru this new phase in your lives.

HUGS

I’m starting to recognize when my husband is suffering from “sick-spouse burn-out” by the glazed look he gets in his eyes immediately after asking me how I’m doing. It’s not that he doesn’t care, it’s what everyone else has said – he can’t help me, he feels bad for me and worries that I might be like this for awhile and slowly lose my mind. He has had to take on the burden of household care, he has the only income, he has to do all the shopping, most of the pet care, take me to my appointments etc. and then add to that the fact that he can tell me something three times in five minutes and I still might not remember two minutes later.

I am sure it’s incredibly frustrating for him to go from having a normal life to having to be the caretaker of a forgetful, clumsy, whiny adult. He is under a lot of stress, as I’m sure your wife is, and perhaps right now worrying about you would just put her over the edge completely. Our brains are programmed for survival and subconsciously we sort through our thoughts and suppress those that are too painful or too stressful for us to deal with at the time. They get stuffed in the background while we deal with more immediate needs but that does not mean they aren’t there, that the caring is gone.

I know my husband very well and we communicate very well also – I love him very much and want him to have as normal a life as possible. I tend to recognize (now) when he is getting frustrated with me and I address it right then. For example, last night he was trying to remind me of some upcoming appointments but I was too tired to be able to focus, he had had a long, hard day followed by a nasty long commute so wasn’t in the greatest of moods anyway. Me not being able to pay attention, forgetting what he said as soon as he said it etc. was just like salt in the wound for him. When he struggles all day long at work it would be nice if he didn’t have to come home and struggle to make me understand something. And it would be even better if he didn’t have to come home and “take care” of me at all, if he could just come home from a hard week, grab a beer and head out to the barn to play guitar and relax without even having to go through the routine of asking me if I ate anything that day, if anyone called, do I need help with anything etc. etc.

And then there is the fact that people just don’t know much about this disease. I’ve had these memory problems for years but it wasn’t until recently that they started becoming a hot topic on here. Once I saw that LOADS of people have memory problems I told that to my husband so he would understand better and realize that I’m not forgetting things just to be a pain in the rear – it IS related to the disease, somehow.

It’s a fine balance between enough information to realize my challenges so he can accomodate them as much as possible – and too much information that overwhelmes his already stressed out psyche. My best suggestion to you is to just try to talk about it as much as possible. I frequently say to him “I’m sorry you are getting frustrated with me, I’m not doing it on purpose to irritate you, I’m just really tired and having a hard time paying attention, maybe we should try this after a nap.” or something similar. Sometimes he doesn’t even know he’s getting irritated with me so this is a good cue for both of us.

I’m sorry you are going through this right now. I understand. I have the most patient and loving husband in the world but he still gets overwhelmed with the way his life has changed and his additional responsibilities. I do encourage him to take breaks from me – go visit friends for a weekend, go to a concert, have the boys over for band practice as much as possible etc. I thoroughly believe he needs vacations from my illness every now and then even though he would never admit it to me for fear of hurting my feelings. I try to go days without even mentioning one symptom just to try to balance out those days when we can’t seem to talk about anything except my illness.

Perspective is our most valuable ally but the hardest to find when we are stuck in an illness that leaves us with brain fog. “Rest, be well” and remember life can be too short to spend it in anger. 🙂

Julie

I think Julie said it well. This disease overwhelms our spouses. All the pressure of being the “breadwinner” and caregiver. Their lives has changed immenously too. My husband is wonderful regarding doing anything and everything needed but he is a different man than before this started. In order to help him cope I also sent him off to do “fun” things once in awhile just to let him blow off steam and get his mind off things. I also tried to get him more involved in the kids activities like he used to. I tried to get our “old life” back as much as possible. I know that life is different now but there are just pieces that we thought were important to maintain.

Kinney, I have to agree with the others on this problem. My hubby is under stress also, and he acts like I don’t have a good reason for not working. I have learned how to read him(after almost 19 yrs of marriage(17th) you would think I would have finished that book yrs ago;) ) I know when to let him know that I’m having problems and when to just keep it to myself or do something about it on my own. Its not that he doesn’t care, its just very overwhelming and he doesn’t take change well either. This disease changes more than just the patient’s life, it changes everyones’ lives. I know I would probably be just like them if they were the ones with gbs/cidp and not me. Your life is in your hands, you are the one who has to make things happen when you want them to. Stay positive about the situation, change what you don’t like and tweek what needs to be tweeked-You can do it! Take care.

[QUOTE=Kinney]:mad: I am frastrated and angry. Lately my wife seems to not be sympathetic about my pain and effect. I have been forgetting things and today tired to tell her I didn’t remember a name of one of her friends. She told me you use your disease as an excuse. 😡 I have been having trouble even writting out a simple check. The other day, I couldn’t do it, forgot how. It pisses me off that she is at the point where she doesn’t care. 😡 What do I do? Not share anything with her? Try to get her to understand the disease? Help.[/QUOTE]
As frustrating and depressing as this disease can be for us, the burden our spouse has to carry can be overwhelming. In addition to the burden there is another aspect. There can be a great deal of loss resulting in griefing, often hiding behind anger and resentment. We no longer can do fun things together we used to do like gardening, camping, hiking. There is a lot we lost and our life no longer is the same. It is important for us to understand this and come to terms with it.

What might help is to to turn it around and let her know often that you understand what she’s going through. For example, when you were not able to write a check it sounds like she got pissed off because she had to do it. Maybe in that instance instead of reacting defensively you could have calmly said something like: “Honey, I understand how hard this is for you to see me struggle but as much as a try I simply cannot write the check right now.”

In our 30 years of marriage I always was the one taking care of the finances and writing all the checks. Now I am at a point where I cannot even write my own signature and she has to take care of writing every single one of the checks. I’m helping with it as much as I can by getting out the envelope and putting preprinted label’s and stamps on it, usually pretty crooked 😀

Another thing that helps her is taking interest in this disease by doing her own research which helps her understand. She often comes up with new findings I was not aware of and shares it with me. Of course it helps that she likes to get on the Internet and poke around.

Hang in there. If there’s anything I can do send me a PM.

I have a hard time with the fact that my hubby works so hard and i do nothing. Sure he does, too. I’ve said before that i was raised by and am married to workaholics. I have always worked, starting in the family business, since i was 12 years-old. I’m absolutely a giver, rather than a taker. So this being laid up stuff is really frustrating on all of us.

To make myself feel better, I find small things that i can still do for my hubby. He gets home from work at 4a.m., so i pretty much spend all day resting, so i can pull some energy out of my rear at about 8pm. The best “treat” i like to give him is to get his pj’s, slippers, and towel in a neat stack outside the shower. I can usually manage that without too much difficulty. Then, after resting a bit, i get his clothes out for the next day and put them on the table beside the bed. It’s cool cuz those are the times of the day that he is most tired.

When i have that rare moment when i feel pretty good, I may cook a whole meal even if no one is home. I put it in the fridge for my family to enjoy later. It is convenient and “back-to-normal” for them, and it makes me feel better about myself.

We have free text messaging on our cell phones. It is awesome because my husband will text things that he won’t talk about in person. This helps, too.

[QUOTE=Kinney]:mad: I am frustrated and angry. Lately my wife seems to not be sympathetic about my pain and effect. I have been forgetting things and today tired to tell her I didn’t remember a name of one of her friends. She told me you use your disease as an excuse. 😡 I have been having trouble even writing out a simple check. The other day, I couldn’t do it, forgot how. It pisses me off that she is at the point where she doesn’t care. 😡 What do I do? Not share anything with her? Try to get her to understand the disease? Help.[/QUOTE]

Kinney,
Frustration and anger can become overwhelming. I know, I’ve reached the point where I just give notice that I will not be returning next year to teach. I can not longer do what I love doing. My brain and my legs have gone south.

Now, I have to trust that God will help me find out and except what comes next. Julies advice was right on the mark. Our spouses are caught up in the whirlwind that comes this the disease. They can not always understand why we look so good and feel so rotten. It is a rough ride for them. Every once in a while, they burn out. The only thing we can do is try to understand and give them as much support and understanding as we can. The words are easy, the reality is a lot harder.

Hang in there
Jim C

Kenny

I hope that your wife will try and read some of the responses here or just read some of the comments on these discussion boards. I am a caregiver and yes I do get overwhelmed. I have my days that I cannot help but cry. I am the one who is proactive and he acts like he just wants to be alone in his own world. I cannot cry in front of him because it causes him to get upset. I only did this once and it really is hard on both of us.

I would do anything for him but there are times that I just feel like I am the only one who cares. I get frustrated also when I am running around doing everything. I might have my hands full and just get in the house and he asks for something. I do not wish this disease on anyone and because people ask him how he is doing he always says he is fine, when he really isn’t and yet I am the one he yells at . He is angry alot and so tired . He is just happy to watch tv and sleep when he can sleep.

It is hard for others to realize that we also need support. It seems that he is better when others are around. You wouldn’t know he was the same person when others are around. He does participate more and even lends a hand to others. I get alot of company and it helps him to have some fun with others while I feel so busy entertaining and cooking which I use to love to do but now I feel tired. It does make me happy to see him have some enjoyment instead of loafing and feeling down. I noticed he does not hear me sometimes too and not sure if it is because he is not aware of going ons around him or he really cannot hear me.

Try talking to your wife or get articles about your disease so she can understand. I am on the friggin computer so much just to learn more and more about his disease and how I can help that I do get tired of it and need to stay away for a few days. I need to go out for a walk or talk to a neighbor to relieve some of the pressure. Maybe she needs this too. Try getting her out some and see if that helps.

What a heavy thread! and sad, too 🙁 These diseases can take such a huge toll on our most important relationship. I spent so many guilt-filled years watching my husband struggle with “everything”; work, home, family, loss of hobby time, no more hiking/camping, etc, etc. His usual response was “Honey, I get to go to work, play with my toys (heavy construction equipment), and visit with the other guys. You are stuck in your skin 24/7. It is a privilege to care for you”. Sounds romantic eh? Well, he’s human and he doesn’t always remember those sweet words!! I would say, “don’t you realize how sick I am? you don’t seem to concerned at times”. He said “would it really help to know how scared I am ~ not knowing on some days if you’ll be alive or dead when I get home? And every time we try “something new” and hope that it will make a difference and then the waiting. . .”.

Well folks, we are 13 1/2yrs. into this struggle and are now beginning to realize and accept our new “normal”. But I don’t believe that either one of us will get use to it. It wasn’t in our plan 🙁 The only “secret” I can share is the remembering to do the little things for each other. They do add up and become the glue that keeps things together. Even people without disease have to work at their marriages! Don’t give up; keep remembering why you fell in love in the beginning 🙂

“Even people without disease have to work at their marriages! Don’t give up; keep remembering why you fell in love in the beginning”……………….

…………………This is the best message of all……thank you, Judi, for reminding us!!

In honor of Gene…………..”Take care, be well”…

Per

As a therapist and man who has been married 38 years I think it is most important to keep communicating. If one begins to hide feelings or not speak of certain things to protect the partner resentment grows followed by anger. No matter how hard it is, speak what is really on your mind and ask the other to do likewise. Fight and struggle is actually good for a relationship and even though both caregiver and patient may wish to avoid them they clear the air and allow progress to occur. Hard as it is one should not “settle” for a relationship as is when work and struggle might make it better. I think it is necessary to tell your loved ones exactly how you feel and if their eyes glaze over challenge them. But don’t always expect love and support because sometimes they need to get angry too-not really at you but at the disease and fate. If you are real and your partner is real then the relationship can be real. If being real actually hurts the relationship it is not a good one to begin with. Jeff

Hi Kinney,

I’ve been going through GBS with my fiance Ben for just over three years. There’s been a LOT of ups and downs, a LOT of fatigue (for both of us, but mostly his fatigue from GBS), a lot of pain and a few hospital visits over the last three years. I don’t know if things will ever get better for my sweetie, but I really hope they do soon because I hate seeing him in pain, and I really hate that he’s on about seven different medications.

I know his pain and all the medications alter his personality at times, and during those times, I’ve been known to tell him, “I still love you, but right now I don’t like you very much.” In fact, today I had to ask him to stop being so cute because I was pretty angry with him, but he has the sweetest smile, I had to kiss him anyway. I try to do so much to try to help him, but I always feel like there’s something I’m not doing right, and I must be missing something.

The one thing I can for him, and that I do well, is keep lists of all his new and existing symptoms and keep in constant contact with his neurologist. Because of this, we’ve developed a great relationship with the doctor, and since the doctor respects me as a caregiver, he listens to my concerns and allows me to put in my two cents in regards to Ben’s medical care. I know I’m no rocket scientist, and I probably won’t be the person who discovers a cure for GBS, but these little things make me feel like I’m doing something to help and that it’s both of us going through this illness and not just him.

I work full time, and tonight I have to wash dishes and iron my clothes for tomorrow. It isn’t always paradise, but I have my end of the relationship to hold up, and he has his.

Shannon,

Can i just say that you are an amazing person? You deserve an applause! Good luck to you and your sweetie!

Heavy thread, indeed.

Kinney,

Just thought I would throw my hat in the ring…I’ll start by stating that I began picking up my short-term memory about the time I was discharged. I don’t remember alot from the hospital, mainly re-hab and working to get out is all I remember of that.

What I recall after I got home, and this is a bit tough to talk about for me, but I can recall my wife going through a living hell that I personally put her through.

Mad? Hell, I was mad. Kicking mad. Furious. My three-year-old told me that she was scared of me, looked me in the eye and stated she was SCARED of me. Furious. Mad. My wife wouldn’t talk to me. My doctors (re-hab) pleaded with me to continue my medication schedules, so that I wouldn’t become a “martyr.” Mad.

I’ll admit that I can’t imagine what my wife was thinking then – 7 months pregnant, and caring for her husband who was JUST discharged from the hospital. Just one instance I can recall is her getting up to help me with my urinal multiple times through the night, all the while she was struggling just to get comfortable being pregnant and dealing with a three year old. That was just the physical part. Lack of sleep for her, lack of reasoning, lack of anything resembling a normal marriage.

Now, for the psychological effects….I can recall yelling for no reason. I can recall telling her she had no idea what it was like. I can recall many, MANY more horrible things. Bottom line, this was an extremely tough time for both of us. We made it through with love and with God on our side. But it was tough. REAL tough.

We’re now – almost 15 months out – really doing great. I’m able to talk with her and she is always ready to listen. I have to do my part and put her and the kids first, before the GBS. Many times, with the two little ones, something needs to be done – RIGHT NOW! I had to come to the realization that I needed to start helping and pitching in. When I did that, things got better. Our marriage has grown.

Kinney, all of this started with COMMUNICATION. We couldn’t have gotten anywhere without talking to each other and TAKING TIME to talk to each other. Its the simplest thing to write down, but one of the toughest things to get down to business and do. Where the rubber meets the road, and you have to sit down and talk to one another and REALLY LISTEN to one another, its tough, but you’ll accomplish milestones. Really.

Hang in there. Judi stated it correctly. Don’t forget the reason you married in the first place.

Contracting GBS is a speedbump, definately, but keep that vehicle moving. Don’t let it stop. Shift gears, but keep her going.

If you ever need to chat one-on-one PM me anytime.

Brett, that’s beautiful and very well written. I hope your wife knows how much you value her.

Jamie, I do what I can, but when people say I’m amazing, etc., I always tell them I’m normal. To me, people who don’t help out their sick loved ones are the amazing ones. Amazingly selfish.

Shannon

So far, I have not been stressed about caring after Kevin. He is so kind and compassionate himself, he is always thanking me and telling me I am the best. I have to tell you, that goes miles. So maybe little unexpected thank you’s or kisses might help aleviate some of the stress your care givers are feeling. On some aspect, it is easier for me as a caregiver because kevin is a child. Me being the adult (sometimes!) makes things easier when telling Kevin what needs to be done. Additionally, I do not have the financial stress of loosing a provider for those whose spouses can no longer work. My stressors are different, like, will this go away, will Kevin find a job with insurance, will he get worse and never experience things that kids do. Will someone want to marry him because of his illness, am I properly teaching him how to manage and deal with his illness with enough reality. Will I live long enough because I am so overweight to ensure that he makes it through high school? Those are my stressors, so I can’t even imagine having those plus being the only person working or taking care of the family and their ill spouse. I do not know how adult caregivers of adult spouses do it!!!
Dawn

Good job, Kinney! I hope that you can see how much we care. It’s not an easy road but it can be walked one step at a time. Thumbs up 😀