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Overwhelmed and frustrated ... crying out for help!

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  • Overwhelmed and frustrated ... crying out for help!

    [SIZE=4]My husband is 55 years old. We have been married for 34 years. I do not work - I am a cancer patient, and I have other health issues as well. We live in our RV - we were work camping, but he no longer feels up to it, and I cannot do it alone. He has been on PD for 2 years. His kidneys failed due to bad medication taken 20+ years ago, along with diabetes and high blood pressure - drs are not sure if the medication started it all or not.
    The first 2 years were not all that bad. Oh we had bad days, and even bad nights. But for the most part - he had a good attitude, and our faith stood us well. He laughed a lot, he talked about the future a lot. We still dreamed and planned. We spent time with our kids and grandkids.
    This past August ... he started on a downward spiral that is now beyond my control. He had wanted to go to Oregon for 3 weeks and fish with his best friend. (We live in Texas) But due to money issues (we are living on just his disability check) - we couldn't go. Once he realized this, the day we were supposed to leave (he had been hoping for some kind of 11th hour miracle money) - it was like he literally gave up.
    And in the last 6 weeks - oh my! He has done little to nothing but SLEEP.
    I get it that he doesn't feel good. I get it that he wishes we could have gone to Oregon. I get that life sucks a lot. This was not the life we had planned and dreamed about for all these 34 years. I get that he HURTS - dialysis is not his only health issue. I get all this - really.
    But -- I just feel like screaming sometimes! I fought thru highly aggressive cancer - because he asked me not to give up. He told me that he wanted me to LIVE and not die! I wanted to LIVE and not die! Why does HE get to give up now?
    We have 2 kids and 4 grandkids - they live about 2 hours away. We have an awesome relationship with all of them! But now? He barely will even talk to them on the phone! Forget going to see them - even tho we have the time to go!
    I am his primary, his only, caregiver. And like others here have said - he does NOTHING. He says that even hooking and unhooking himself makes his hands hurt. He doesn't consider the severe arthritis I have in my hands! Sigh. He won't even handle the boxes of solution, or the bags either - even tho he heard my oncologist say that I am not supposed to lift anything heavier than about 10 pounds.
    He won't pick up after himself - even when I leave his messes where he left them. But living in an RV - there is only so much room for so many messes before I am beyond the point of being able to leave them! Really? The trash is like 12 inches from the table - but he will leave his trash from eating and drinking on the table! Really? The laundry basket is 2 feet from the couch - but his dirty clothes get piled in a kitchen chair, which is only 1 foot from the couch. Forget him washing his own dishes, or even fixing himself something to eat. He hurts.
    And the anger ... oh my. I get that he feels life has kicked him, has cheated him, that his body has betrayed him - but really? He is NOT in this alone! What has life done to me? Must I be his verbal whipping post? Everything is NOT my fault!!!
    I love the man - I really do. But I am so stinking tired!

    I know this sounds horribly selfish of me - but I just want to be loved again, just to be HELD. A kind word. Bring me a glass of tea. Rub my feet. Smile at me. Sit down and just talk with me.

    I will even do all the housework - I have done 99% of it for these 34 years anyway while he worked. I will do it now. But give me a chance! Do his part by picking up after himself, and don't challenge me with every thing I need to do - it only takes me about an hour a day to clean, the DVR will hold for an hour ... sigh.
    I will do the cooking - again, I have done 90% of it for all these years. But give me some idea of what he is hungry for. And when I do cook - if it isn't good or right, just don't eat it. Don't say rude and mean things about it.
    I will do the caregiving - even to setting up and taking down, making all the appointments, doing the driving, whatever it takes - but it's NOT my fault that his kidneys have failed! It's not my fault that he is not faithful to take his meds and so he doesn't feel his best. It's not my fault that he chooses not to eat right, or drink the wrong things.

    I'm sorry this is so long ... i'm tired. i'm overwhelmed and frustrated.
    And I feel so very selfish in saying any of this!

  • #2
    Hello kamelotrose,

    Studies have shown that the most successful HHD patients are those that take an active role in their care, e.g. perform more than 50% of the tasks required to support the modality. The situation that you have described is certainly not that.

    Your husband may as well have treatments performed in-center 3X weekly, in which case you will be relieved of the burden of nearly all of the thankless work that you describe. Regrettably, his health will not match that of an HHD patient, owed to the reduction in weekly treatments and the often less than uplifting environment of in-center dialysis.

    I would suggest for the sake of your own mental and physical health, explain to your spouse that if he doesn't start doing his share of the HHD responsibilities, you will abandon HHD and force him into in-center dialysis. This is plainly a case for "tough love".

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    • #3
      Hi Kamelotrose,
      Your story started out sounding like mine (w the exception of the RV and you being a cancer survivor) HOORAY! for you btw! However, we did go through a short bout of time - about 2 months where my husband was angry all the time and it was like walking on eggshells at home. I might think that your husband had what he considered a dose of reality w the lack of funds to travel. I might think that your husband used that thinking to transfer over to the thought that he will not get a kidney (assuming that he is on a list). If so, that's pretty tough to believe and maybe he just 'threw in the towel'. If he is no longer taking care of his meds, diet, including beverages, he just may have a "what's the use" attitude. I see you wrote this in January. If your husband still feels this way my biggest guess is it is depression. I;m so sorry that this is/was like so. I hope things are better. Also, our rough time was the end of Feb thru mid April. In June my husband had kidney stones. It may be something organic. My best to both of you.

      Comment


      • #4
        Hello there. Just want to say that I feel your pain. I have the same issues with my husband of 40 years. We have been doing pd for 5 months. He has many ups and downs. Never positive about anything. I am tired of being the cheerleader. I am mentally drained. Today I feel anxiety. I try to stay positive but I am getting tired. He is losing faith in this whole process. I need support too. I want a hug, a smile from him and something normal. Hang in there and I will try too.

        Comment


        • #5
          Originally posted by Shuber2 View Post
          Hello there. Just want to say that I feel your pain. I have the same issues with my husband of 40 years. We have been doing pd for 5 months. He has many ups and downs. Never positive about anything. I am tired of being the cheerleader. I am mentally drained. Today I feel anxiety. I try to stay positive but I am getting tired. He is losing faith in this whole process. I need support too. I want a hug, a smile from him and something normal. Hang in there and I will try too.


          I know how you feel.been on pd for 2 years now,I really cant see doing this forever.My sister is going to give me here kidney.but I have some many other things wrong I dont know what I want to do.And support ,not to much support here.

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          • #6
            I am so frustrated - My husband has been on dialysis for 5 years (peritoneal, clinic hemo and now transitioning to home hemo). We are in our mid-thirties and have a young son. I'm so darn tired, and probably selfish too. We both work full time.....and now I will be serving as his care-giver 5-6 nights a week, work and take care of our child. No one gets it- I am loosing my complete freedom. Currently, when he goes to the clinic at night 3xweek, they serve as his caregiver and I spend time with our son, running errands, normal wife/mother duties. Now that he will be doing HHD, I'm responsible for his care. Yes, the HHD is suppose to be gentler, extend his life expectancy, and make him feel better. If I dare complain to anyone, they don't get it, think I'm selfish, don't see what I am giving up, or just feel bad for him for being hooked up every night. I am beginning to feel resentful, angry, frustrated.....every emotion in the books! Please tell me I'm not alone...is it going to get better?

            Comment


            • #7
              Originally posted by frustrated1 View Post
              I am so frustrated - My husband has been on dialysis for 5 years (peritoneal, clinic hemo and now transitioning to home hemo). We are in our mid-thirties and have a young son. I'm so darn tired, and probably selfish too. We both work full time.....and now I will be serving as his care-giver 5-6 nights a week, work and take care of our child. No one gets it- I am loosing my complete freedom. Currently, when he goes to the clinic at night 3xweek, they serve as his caregiver and I spend time with our son, running errands, normal wife/mother duties. Now that he will be doing HHD, I'm responsible for his care. Yes, the HHD is suppose to be gentler, extend his life expectancy, and make him feel better. If I dare complain to anyone, they don't get it, think I'm selfish, don't see what I am giving up, or just feel bad for him for being hooked up every night. I am beginning to feel resentful, angry, frustrated.....every emotion in the books! Please tell me I'm not alone...is it going to get better?
              Hi there, my name is Kelsey - I'm the community manager for myDaVita. I appreciate you reaching out here and sharing your story. You are definitely not alone in how you feel and there are many other care partners on these forums that can relate to you. I hope you're able to find the support you're looking for and connect with others who share similar experiences. I'd also recommend speaking with a local social worker. They're another great support resource as well. Please don't hesitate to reach out if you have any myDaVita questions!

              Your community manager,
              Kelsey

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              • #8
                Originally posted by frustrated1 View Post
                I am so frustrated - My husband has been on dialysis for 5 years (peritoneal, clinic hemo and now transitioning to home hemo). We are in our mid-thirties and have a young son. I'm so darn tired, and probably selfish too. We both work full time.....and now I will be serving as his care-giver 5-6 nights a week, work and take care of our child. No one gets it- I am loosing my complete freedom. Currently, when he goes to the clinic at night 3xweek, they serve as his caregiver and I spend time with our son, running errands, normal wife/mother duties. Now that he will be doing HHD, I'm responsible for his care. Yes, the HHD is suppose to be gentler, extend his life expectancy, and make him feel better. If I dare complain to anyone, they don't get it, think I'm selfish, don't see what I am giving up, or just feel bad for him for being hooked up every night. I am beginning to feel resentful, angry, frustrated.....every emotion in the books! Please tell me I'm not alone...is it going to get better?
                This is my first posting and the reason I found this forum is becuase I too was feeling resentful, angry and frustrated!!!

                Sooo...You are most definitely NOT alone. My husband has also been on PD for 5 years and switched to home hemo a year ago June 1st. I think his health may be worse than your spouses since he is not able to work (he also has other health problems now after dealing with kidney failure since 1998, starting with hemo, a transplant, then PD and now home hemo). I work full time and then go home and do dialysis. It takes 5 hours - don't let them fool you with the 2.5 hrs line because that is just the treatment time, not the actual time it takes to do the session. So 5 hrs, 5 nights a week it is all about dialysis. And of course half of your house becomes a dialysis clinic. Let's not forget the cheerleading requiremnet, because you have at least a half hour of him griping about how he hates dialysis and its your job to remind them how nice it is to be at home and we would just be watching TV anyway so its really no difference, etc. etc. And then you try to convince yourself that it's really not so bad, because at some point you just want to say forget this...I'm supposed to be his lover NOT his nurse...

                And then you wash your hands, remind yourself that it really isn't so bad and how very much you would miss him if he wasn't there, and do another session...

                Sure felt good to get that off my chest, thanks.


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