Caring for a Spouse
Welcome to this online support group for spousal caregivers! Please introduce yourself - Ask for advice - Share your experiences caring for your husband, wife or partner. Talk about ailments and treatments, caregiving and relationship challenges, daily life, your tips for others. Vent, laugh, and come back to this online support group as often as you need to feel less alone. Some featured conversations to help you get started...
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What's New Today
1 day ago
My fiancé has congenital myesthenic syndrome that causes muscular dystrophy and pain, which greatly affect his mobility and physical abilities. He is the first disabled man that I have ever been with and it's really, really challenging. When he's tired or in pain, he is so condescending and downright mean to me. I find myself constantly questioning whether he's abusive or not. We also have a baby on the way and I already do so much around the house- I feed him, bathe him, get him everything he asks for, and so on. I feel like he's taking advantage of me at times and he refuses to do little things that I know he can physically do, like call the pharmacy to refill his meds or get things for himself while he's out of bed. I talked to him today and told him I need him to start helping out more with little things, because when the baby comes, I won't be able to. He argued with me and said he didn't do those things because "he didn't want to".
I just don't know how to make this work. Am I wrong for asking him to do more? I'm not in his body so I don't know what he can really do and what he just doesn't want to. Also, how do I cope with him being so mean? I wonder if it's going to be like this forever. I don't think I can do it much longer if he isn't willing to accept some responsibility for his behaviors. But I also understand he has it really tough and I try to be understanding. How do other people cope with these challenges in their relationship with disabled spouses?
1 day ago
Everyday I watch my husband push through his challenges to make his daily trip out of the house. Sometimes, like yesterday, I just wanted to say, "Don't go, honey. It's not worth it. Get back in bed." He'd been in the house for two days and said that he needed to get out. I'm sure he did so I helped get himself together so he could have his outing. I've had times when I get upset that I don't see him pushing himself to go places with me but I do my best not to say anything. I figure he just wants to enjoy what he considers the end of his life doing what he enjoys. He deserves that, right?
That being the case I also try not to feel bad when I make my own plans. Last weekend I had a couple of outings with some friends and the same will be this weekend. When I make these plans, I think for a split second if I"m wrong.. Am I supposed to be sitting in the house with him, missing out on a little fun?
I'm really doing the best that I can. Of course I don't know how much time my husband has. left. I'd like to spend more time with him but I can't control that he's not interested in doing so. I figure I owe it to myself to enjoy my life.
Anyway, just needed to get that off my chest. Hope it helps someone else out there find a balance with caring for their spouse along with themselves.
4 days ago
Brrgh...The temp is dropping. I sure wish my husband would get interested bed with me so we could warm each other up. But he won't come out of his man cave.. He wastes so much time that we could be together by being by himself. Oh well. Off to bed I go...alone.
4 days ago
I'm a mess tonight...the weight of being alone is very heavy right now. I'm afraid of everything...sounds, smells...is it my imagination or something to really worry about? I'm second guessing every decision, big things, silly things. Everything I have to do is because Ed isn’t coming back and it just seems to become more permanent with each task that I complete.
Tina D said...
6 days ago
Well we have had good news and worse news!! The cancer cells are dying which is the good news but the tumors are continually growing and now the cancer has spread to his spine. When we got the good news we got over excited again and thought maybe he's going to live through this.. Then the bad news came and I feel like I got punched in the face again!!! Cancer has put me on a rollercoaster! My emotions are all over the place. I hate cancer more than I have ever hated anything!!! It's not just taking over Gary's body it's taking over every aspect of our lives!!!!
7 days ago
Hi, I'm new here. I am 38 years old. My husband is 43 and I am his primary caregiver. We have 2 children. My husband is known to his doctors as "mystery man." He had thyroid cancer 4 years ago and a fundoplication surgery (they take a 1/3 of the stomach and wrap it around the esophagus) for severe acid re-flux which had to be re-operated on twice after because of the dr's mistake and had his breast removed because of lumps. Since those surgeries life has gone downhill. He is in severe pain, cannot eat because of the pain, is on a feeding tube, his body does not absorb medication which is terrible as he does not have a thyroid, has severe diarrhea, he is insanely weak and passes out quite often. Nobody has any idea why he is in so much pain, bloating and why he has malabsorption issues. Last year we were told he should have never had the fundoplication surgery as he was not a candidate for it. It was hard to hear 3 doctors tell us as it changed our lives. He stopped working almost 2 years ago. I am in the process of getting my masters degree which is an added stress but I do not have the option of stopping now. There are days when I feel all alone even with supportive people around me.
7 days ago
I have a megga toothache that started yesterday so everything that i need to do is more irritating than usual. I paid all the bills this morning, called dr offices with questions about things going on w my husband. Walked our little blind dog, cleaned house some. All this started at 7am. Just went to lay down a minute in bed beside my husband. He started groaning, and moaning, the dog started barking. The cat was obsessively meowing. Good Lord. Please everyone just SHUT UP!!!!!! Finally up again, thought my husband might be groing as a hint he wanted help up. No he isnt ready yet. Give him a minute which could mean five minutes or a hour. One never knows. Have so much to do today but my umph to do it is gone......sorry just had to vent.
9 days ago
It takes time in a marriage to learn the communication styles of our spouses. My husband has been in a funk since Sunday. Today he's been kind of short. Well about an hour ago, he ventured out into the living room with me and my son. He doesn't offer an apology or anything, just kind of starts making small talk.
Prayer truly does change things. I prayed for him earlier today and it's like God made an immediate change in his heart.
10 days ago
I am new to this site but hope it will help. Today is our 47th anniversary and this past few days have been hell. My husband has Stage 4 colon cancer and was in remission for 3 months, however Wed we found out the lesions in his lungs have got a little large and now we are back with chemo. Thanksgiving was great!!! Fri he was in ER and Sunday our daughter had to put her dog down,who also was in remission from cancer. My husband has been very grouchy and today we are to go on a dinner cruise and my heart is not in it. I want it to be however after his rampage yesterday - I feel so sad and alone.
Than you for letting me vent...
11 days ago
Pretty sad this afternoon. I wanted to get out and do something with my husband but he got angry and belligerent and told me to go out myself. So I did but I'm emotional. I did something that he asked me not to but it didn't. call for him to act like he did. It's so hard not to scream obscenities back at him just to release my own anger. I my would feel good until it was over then I'd feel bad. I could really use your hugs today.
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