Stubborn spouse with CKD. Help!

[psj1102]

Husband has 20% function of kidneys. I cook all diet appropriate meals, he still eats fast food. He no longer exercises and if I don't monitor he will eat whatever. I am becoming very inpatient and frustrated as he is not taking this lifestyle change seriously. It's like he doesn't care. Can someone provide supportive advice? Thank you in advance.

[Hidden]

Be sure that your husband has his affairs in order with a living will and that his choices are known to all of his doctors. If he won't take the steps needed to slow the progression of CKD then you can't force it on him. If he is afraid of dialysis it's because he scared of the unknown. You and he can register for a free, 90-minute Kidney Smart class in your area. It's taught by a kidney knowledgeable professional and will provide you both with options for End-Stage Renal Disease, or ESRD. He has options as to the modality of dialysis to choose or to simply go with palliative care. If you are in the USA you can register at davita.com and have the unknown become known. If he still wants to avoid the inevitable. I've attached a short video from YouTube that explains what is going on in his kidneys. Tell him there will be a Big Mac at the end of the video if he still wants one. Hopefully, he won't. If he does, get him one and go back to my opening sentence.

youtube.com/watch?v=mi34xCf...(Not working as expected?)

[psj1102 in reply to Hidden]

Thank you for the advice. I thought this would be the case. We have been married 1 1/2 years and he did not tell me about this (another issue). I only found out when I went to the dr with him and then he played dumb. Nonetheless, like you said I can't force him and drive myself crazy and stress myself out at the same time. I just wanted some advice to make sure I wasn't giving up too soon. I have spoken with him about getting his affairs in order and again I can't make him do anything. He is in extreme denial. Thanks again.

[Hidden in reply to psj1102]

One other point based on your reply. You have been married less than two years and you weren't told about this life-changing condition. I know nothing of your financial situation but do what you have to in order to protect yourself. See an attorney if there is any chance you could be negatively impacted by his choices.

If he won't help himself you must protect yourself.

[RhenDutchess123 in reply to Hidden]

Excellent little film....!!

[Bassetmommer NKF Ambassador]

HI Psj,

Living with someone who will not take care of themselves is why people have children. I struggle often with my husband who does not always adhere to his diabetic diet when I don't make his meals.

You know what? He's an adult. And yes, I used to get all sorts of crazy and worked up about it. So, I went with him to his last visit with his endocrinologist. I sat next to him, and sort of behind him. And when he said he was taking his insulin, or eating the foods she asked about, I shook my head to make sure she knew he was lying. So she then laid down the law about what he was facing if he was not careful. His A1C lately had been steadily rising. She was not harsh, but forceful.

So now, coming from the Doctor, who was female, made the difference. And now he is back on track.

When some men ( and women) what attention, they will take any attention they can get, including negative. You swirling around him making sure he is doing what he is supposed to do feeds that need. And then, he also feels he is in control when he get his way, even if it is harmful to him. In a way, you are enabling him. I know that sounds mean, but right now, his problem is totally yours. But people like that will blame you when the crap hits the fan.

The thing is this, you are the only one who is going to get sick from the worry of him being non-compliant. But I am like you, I don't want to deal with the crisis either when he has a complication. So I constantly tell him, when he loses a toe or foot, not going to be my problem.... I am not being mean, he just needs to know it is his responsibility.

Try calling his nephrologist or doctor. Tell them what you are facing and what is going on. Let them work with him.

Does he understand what is happening to him? Again, get him to a class. But I bet you he does not think this is really an issue. CKD does not usually have pain or limitations that make people realize how sick they are until they are to the point of dialysis. Believe me, denial is very common.

If he doesn't care, I would ask him why. Does he think he is invincible?

Then the last thing to try is say..."go for it. Do what you want, eat what you want, but find someone else to take care of you when you have to go to dialysis." And then let him stew on it.

Good luck and let us know how it goes.

[psj1102 in reply to Bassetmommer]

Hello and thank you. I don't disagree with anything you have said. My last straw was to reach out to a forum like this. Your statement

"When some men (and women) what attention, they will take any attention they can get, including negative. You swirling around him making sure he is doing what he is supposed to do feeds that need. And then, he also feels he is in control when he get his way, even if it is harmful to him. In a way, you are enabling him. I know that sounds mean, but right now, his problem is totally yours. But people like that will blame you when the crap hits the fan."

You are right I am enabling him. I am learning not to feed into it and if he makes that choice to eat whatever then that it is on him. For me it is really hard to watch him harm himself and our marriage. I go to all appointments and call him out when the doctor is asking questions and he tells him some BS. He doesn't like it but I don't care.

He knows what is happening he has a brother who is 70 who has been on dialysis for years. My husband is only 56, has always battled with weight, high BP and type 2 diabetes and doesn't exercise.

I have asked why he doesn't care and the response that I get is very non-chalant and kind blows it off. I stopped asking after while for my own insanity. Although I have been good friends with my husband for 25 years, and married only 1 1/2, there are things that I am now learning about him that he clearly camouflaged from me.

At this point, as Mr Kidney recommended. I am going to look out for me first. I will still be a loving wife, but unfortunately when it comes to this I will only do so much.

Thank you for the advice.

[lowraind in reply to psj1102]

My husband wants to live to eat, not eat to live. His egfr went down to 25.3 at last blood draw, after being pretty stable in the 30s for several years. I told him it is time for him to start deciding what he is going to do when he is esrd. My two kids grew up and moved out, but I feel that I have this big kid left.

[BMC46]

Very good advice from Mr Kidney. My wife has CKD. I’d only add two things- with GFR of 20 he can register for the transplant list and should as it takes years, depending on his blood type up to 8. Also this is the fight for/of his life and his family needs him. Good luck

[Olivia007]

I feel for you, my husband hides food and eats in his room yes we sleep in 2 different bedrooms and have been thats another issue. But I get so upset he just doesn't care his blood levels are all over the place and it doesnt shock him. He had a follow-up blood work today cause last week numbers plummeted quickly. He had to fast and I went into his room and saw he had eaten a whole box of nilla wafers??? Right before a re test. He saw what my mom went through she survived on dialysis for 7 years but was hospitalized 3-5 times a year becasue she too refused to watch what she ate. I don't get it does he not want to live? We are 20 years apart he is older we have 2 kids 13 and 17 and he doesnt care about them too being fatherless. Hes banned me from coming to doctor appointments so I have no clue as to what is happening with him? Why is he behaving this way? Has anyone else encountered this or are any of you behaving this way towards your loved ones? I'm tired.