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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My husband is in chronic pain with his tailbone. He says "we have to do something". What? I repeated what our primary has told us multiple times - it is due to his immobility and not relieving pressure from his spine and tailbone. I said I would bring it up again when our doctor comes here for his monthly visit. I told him our doctor would likely recommend a pain pill. He yelled at me (in his own fashion with his ABC card) that all I think about is pain pills. I have a bad back and it really hurts. I am not on anything right now, because the last pain pill wasn't working. I told my husband that the reason I "want" to take a pain pill is because I can barely function and if I don't take care of him, there isn't anyone else! And who's going to take care of me?! I still don't think he gets it.
My husband's back also itches - alot. Our doctor has said that it is due to nerve issues. For a short time my husband was convinced there were bugs crawling on him. There were never any bugs and his back looked fine. He didn't believe me. The next time our doctor was here, he told my husband exactly what I had said. We've tried several things and it works for awhile, but lately I've had to apply something 2-3 times a day. And what I'm applying? I don't think we should be using it long term.
I am so tired and feel like I can't win.
We just moved back home to be closer to family & friends for my husband who is in the moderate stage of this dreadful disease. I am tryng to find a support group not only.one for me but also for him. Other people he can talk to help him cope with this disease as well as his family. I think we are all still in the stage of denial, including my husband. He has lost all interest in doing anything, just wants to sit home and watch TV. I have tried to find support groups in my area from the Alzheimer's Association, but they are either nonexistent or closed their doors and left without warning. I can't leave him alone and he doesn't want me to go anywhere without him. My daughter wants me to get him a 'sitter' but I know he won't stand for that nor be comfortable with a stranger. Any guidance is deeply appreciated. Thank you!
Hello I'm Cyns, My Husben Hector is in his 5yr recovery, 2 massive strokes had to have surgery to cut his skull cuz swelling of his brain after He was put on life support then fell in a coma, 'lock in syndrome' it's been a very hard journey . He's not mobile they need to use a Hoyer to move Him about. He lives in a Faculty My goal is to bring him home, He's long term care, to this day its still hard for Me when I leave him every nite, 5yrs later He speaks He's aware alert, no more trak, breathing on His own, Im able to take him on outings in a nut shell, there still much more to accomplish, this is the first time I've told our story, thanks for allowing Me to do so, the struggles are real, I'm still here.
Linux Granny said...
Does anyone else have experience with a spouse hallucinating? I'm trying to be calm and understanding ... it's unnerving when he says things like "how can I sleep with her standing over there with THAT in her mouth?"
He's had mini-strokes and brain bleeds and seizures; the anti-seizure med can cause hallucinations, as can UTI's. Reasons don't give me any ammunition for dealing with this.
Right now I'm feeling sad at having to be the "adult" in our relationship, and knowing he can never care for me if I need support. Worrying over this is keeping me from sleeping.
Any and all suggestions gratefully accepted. Thanks.
Most of my friends and family just don't seem to get how difficult it can be to take care of someone 24/7. They all know that I take care of my husband. Some of them know more than others. But it just escapes me on how to react to someone who says in a text or an email - "I hope you're having a great day." or "I hope you had a wonderful Sunday."
My husband is almost an invalid; I have to clean up after him sometimes because of "accidents"; I am in constant pain with my back (unless I'm in my recliner) and you hope I'm having a great day? WHAT?!? How do you respond to statements like that?
Anyone have a similar
Well, it has been a week or so since I have commented because I am officially done with his crap. He told his trainer (paid) that "Nancy is hell to live with but she has been an angel for the last two weeks." She made some comment that he didn't like and fired her. So training is over, he is never going to get out of bed and my life is now bedpans, urinals and catering to him 2 4/7. My pain from my own arthritic hip is intense and due to all the strain, both knees are painful. I have taken care of him for years and since 11/17, pretty much bedridden and he calls that "hell." Christ, what does he want? I cry all day, especially late at night when the miserable day sets in. Honestly, if it wasn't for my sister and cat Sammy, I would seriously think about ending this. But no, I am not considering this or have a plan. Just over with it! Yes, I can afford help to bathe him but how do you get someone at 3 am to put him. ......all 300 lbs of him, on a bedpan? You cannot. So I told him that when he chose to fire his trainer, HE decided the rest of my life. So GD selfish!
Hello everyone...I’m new to the site here but just wanted to say hello. Like many of you here I would guess, I stumbled onto this site as I was searching the internet in hopes of finding a group or some people who understand finding yourself all of a sudden in the role of full time caregiver - my observation has been that it’s very difficult for friends and family to really understand it and all it entails. While everyone’s case here has its own nuance, I think we all have common ground as well. I have been reading many of your posts for several weeks and wanted to chime in many times but exhaustion would usually get the better of me - anyone know that feeling? I could not have any more admiration and empathy for your individual stories nor can I imagine what it must be like when these journeys span for years. I feel like a light weight for even posting on your site having only been at this for six months although it feels much longer...but as I said, I think it takes another care giver to understand. I won’t recap my story here as it’s explained in my profile. I really wish more of the folks posting here would include their profile bio with a summary of their situation so people, especially new comers, could at least know a little about their history.
Anyway, glad I stumbled on the site...it’s given me relief some nights after long challenging days just to hear others stories. Best to all !
This may be a long shot but I'm hoping whoever posted info on a "super duper GNC powder' sees this. The poster said it had 1,500 calories per serving and tasted great, sometimes adding fruit. I'm hoping to find out more specifics on which one it was that I believe she got for her husband. I have a family member who is having great difficultly in eating and I would like to pass along the specifics to her for her to decide if she wants to try it - of course, with the approval of her doctor. Thank you.
We traveled to the University of Chicago for another post-surgery follow-up. It has been 3 years and my husband is struggling with his health. Although my husband can walk and all, flying and travel are difficult so I’m happy to be back home! lol Anyway, things actually were positive overall. The transplant doctor offered some suggestions and even hope that my husband could get an islet transplant in the future. To clarify, my husband had his pancreas, spleen, gallbladder and the top 6 feet of his small intestine removed due to an autoimmune condition. They took his islet (insulin producing) cells and transplanted them to his liver. Those cells are no longer working so his diabetes is uncontrolled without insulin to lower his blood sugar and glucagon to raise it. He is not a candidate for a pancreas transplant, but he could potentially get islet cells. That would add anti-rejection meds to his list, but there is hope for the diabetes. He also saw an endocrinologist up there and he was put in touch with one who specializes in diabetes following his type of surgery in Miami. That’s only a 2 hour drive, so worth it. He has trouble with his insulin pump so they also explained how we can initiate the process to maybe change it for a better pump type for him. The doctors were happy overall and although he will never get better, they offered some hope for us. We got back yesterday and then today he had 3 more teeth removed. Everything went well. The dentist had his flipper modified and the extra teeth were already on it so they could use it for pressure instead of just gauze. They look great and once he heals it will mean less pain for him. He’s been very edgy and has snapped at me a lot. I try to remember how sick he is and the stress that goes with it. I just wish he could control his temper and words more. It is what it is and I have to remain happy for all the positives we’ve had the past few days. Warm wishes to everyone!
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