Dialysis Support Group

Dialysis is a type of renal replacement therapy which is used to provide an artificial replacement for lost kidney function due to renal failure. It is a life support treatment and does not treat any kidney diseases. Dialysis may be used for very sick patients who have suddenly lost their kidney function or for quite stable patients who have permanently lost their kidney...

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Kidneys & Bladder
/ Dialysis Support Group

Give up?

meg40185
meg40185
My husband has been on home-hemodialysis since the beginning of 2013, after his kidney transplant failed. I am his wife, his caregiver, and his "nurse" as I run his treatments just like a nurse in the dialysis center does. I also have two small children to care for and a full time job. He is on disability and is not working. He cares for our 19 month old during the day while I am working. They have raised his treatments to 5 days a week, 4-4.5 hours per treatment, due to the fact that his bloodwork hasn't been too great and his clearance level isn't good. I get the kids to bed and prepare his machine and we get the treatment started around 9 pm. I finally get to go to bed around 2:30 am or so and have to get up at 5:45 am to get my oldest off to school and myself to work. I work 8-5 and then begin it all again the next day. I also have multiple sclerosis that I battle on a daily basis. I am exhausted...beyond exhausted. I don't have time to take care of myself. I never get any sleep. And my husband has the audacity to scream at me for over an hour today about how much he hates dialysis and how much it sucks and how he's sick of hearing and seeing how tired I am, how I need to respect him more...blah, blah, blah. So tonight I have been crying. And just when I think I'm done, more tears fall. I am giving my all to keep him alive, because I love him. And instead of being the least bit thankful for me, he tells me to keep everything hid. To never say I'm tired. To never act tired. To respect everything that he says and do what he wants. This man is not the man I married. I am so lost and I feel so alone because I'm not allowed to talk to anyone about anything. I have to hide my feelings and I feel like I'm going to explode. Is anyone else dealing with something like this? I could use some words of wisdom tonight. I just don't know what to do.
MrsMarkW
MrsMarkW
You are going to end up in a hospital yourself because of complete lack of caring for yourself. Is there some kind of Respite care in your area? I feel your pain. The last 10 years of my husbands life was hard on both of us. He had lost both legs to diabetes and was on dialysis 3 days a week at a center. I was his sole caregiver, and also worked a full time job and was gone 11-12 hours a day. I slept about 5 hours a night during the week. I was exhausted all the time, I can't imagine how you can go on with only 3 hours of sleep, and you have children to care for, which I didn't have. Do you have any family that could help you out? I had no family within 450 miles to help me, and every time he was in the hospital for something I felt I had to be there whenever I wasn't at work because I was all he had. Luckily, he appreciated every little thing I did for him and he constantly thanked me for taking such good care of him. I did see many other dialysis patients taking out their frustrations on their partners, though. I think it's because they feel so lousy all of the time, never mnd that dialysis is no fun, sometimes painful, makes them weak and tired and grumpy. It's an awful thing to live with. I'm sure he doesn't mean to take it out on you, he's probably as frustrated as you are and wishes he could help you out more. I'm sorry, I don't have a solution for you, just wanted you to know that I somewhat understand where you are coming from. I hope you can find some help soon before you end up sick yourself.
deleted_user
deleted_user
You definitely have it rough and I don't envy you in the least. Its hard when your being pulled in every direction at one time. All you can do is the best you can and by all means take care of yourself.

I kind of went through what you are when we started this whole process this past year. My husband is so stubborn and a bull head, he wasn't going to do anything the doctors where telling him. After one of his rants at the doctors office as we where walking out, I turned on my heels and told him to hurry up and drop dead as I've paid for his cremation already. I said it loud so that everyone heard me. To my statement I added you either do what these doctors are telling you and live or drop dead...either way is fine by me. It was cruel, but I needed him to commit to all the treatments and changes that would be happening. We had 24 hours to decide on hemo or home dialysis, as by the time it was discovered that he had kidney disease, he was end stage renal failure. Since then he's cooperated and I do five exchanges on him a day.

I don't want you to think I don't love my husband, we've been married 45 years and hopefully it will be a few more years we share. Still you have to take care of yourself, and make him understand that even though he's not in good health, he still is alive and not dead where he can't enjoy his family any longer.
jacobwhelanwhelan
jacobwhelanwhelan
I hope things improve for you and I really admire you husband
is very well Blessed to have you.I go for hospital dialysis and I
live alone,
my prayers fior you
hugs J
pegleg1962
pegleg1962
Thats why i wont do this at home myself. My wife is still a nurse and i was a nurse so i know how much the process can exhaust both you and him. I havent had a rtransplant yet but i would rather go to a clinic where i would have better labs and clearence then see my wife stretch herself thin like that. I feel for you, i really do!
sasha2015
sasha2015
Bless your heart..you have a full plate for sure.Your husband isn't thinking about the fact that you are carrying the blunt of everything and that you have an illness you are dealing with also.he's being selfish.He can't tell you who you can and cannot talk to about anything.that is your choice.he is in no position to demand that of you.Think about how he would be without you.he has chosen to do home dialysis because he doesn't want to be around anyone and doesn't want anyone knowing he's on dialysis.Being in the dialysis center would be better for him and you.This would free up time for you to take care of yourself and your kids and let someone else take care of him for a few hours a day.If he doesn't agree with this,which he won't,give him an ultimatum.the center or else.I am on dialysis and have been since July of this year.I am single and live alone.I have to get to the center 3x a week 4 hours a day and on my off dialysis days take care of daily living.it's tiring..but I do it. I do have a great family and friends for support but when it comes down to it I have to do this on my own.being at the center and talking with other patients and their families has helped me deal with this situation.It is hard on dialysis patients because we feel we have no control over much anymore,but I thankfully my friends and family give me support I need and the space I need to deal with this daily..i have a reality bites moment at least once a day lol.I dust myself off and face another day.You need help my friend and whether he wants you to get it or not..GET IT ANYWAY!!.He can't stop you..Good Luck and God Bless