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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!
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!
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