Need a perspective from someone else in kidney failure

My husbands kidneys have failed. He has been on dyalisis for 2 months. I just need a different perspective, because he is driving me nuts.
He has had uncontrolled diabetes since he was 12. He has already had two eye surgurys. We have six kids. And have been married for 15 years.
My problem is, is that he is sleeping all the time, he pukes a lot, and he is a complete ■■■. He has always had these charactetistics,well not the puking, but they have become so much worse.
For example, the other day I was gone to be with my father in the hospital. It was a major surgury. My husband was left home with kids. He pushed all the responsibility on my 15 year old. She put all the younger kids to bed, stayed up until younger ones slept. She said that when the baby woke up at three in the morning he told her to watch him because he has dyalisis in the morning. The power went out while I was gone and he left all six kids alone in the dark to run to his cousins to see “when the power was coming back on.” The next morning my daughter called me near tears, telling me she was worn out.
I went to church this morning with the four oldest(15,13,9,5) I made sure the younger two had fresh diapers before I left. I came home to him sleeping on the couch. My son had marker everywhere. The whole house was trashed. The youngest are 1 and 3. When I asked him why, he said because he didn’t feel good. He has slept all day today. Around supper I had my kids check his sugars. The machine read “HI.” After five minutes of him laying there, I had my son hand him some insulin. He has not gotten up to recheck them.
He canceled the appointment twice for getting on transplant list. Waited until the last minute to get his testing done. Forgets his insulin and blood pressure pills.
The other day he called me and our daughter f**king people.
A few weeks back when I took older two out I came home to my nine year old saying Dad slept and I had to take care of baby.
My question is, is this normal? Is this what I am to put up with until he gets a kidney/pancreaus? I am sick of him. Am I being unreasonable asking him to watch over his own illness? Do you take care of yourself and all the kidney appointments or does your spouse or family?
We didn’t have a strong marraige in the first place and now. . well…
Thats why I need a different perspective from someone who feels the same way he does. How much should I expect him to handle? He does still work 32 hours a week. But does no chores at home. Won’t even play with his kids. When the garbage didn’t get hauled out for garbage day I asked him about it. He said he thought it was our sons job(he is 9).
Am I being unreasonable to say, “take care of yourself.” I know I do not feel like it is, I already have to watch out for my 15 year old diabetic, and my own diabetes. I want to just say, whatever, don’t check your sugars, don’t take your pills and just sleep all day. Just sleep where I can’t see you.
I feel so mean. Thats why I need to know how others with this are handling everthing. I have asked if he is depressed too, and of course he always says no.
Thank you.

Sounds like he's got some mental issues going on either depression or something else, sound like he's giving up. I don't think he'll be put on the transplant list unless he can show that he can be compliant with his meds. As far as the vomiting and being tired, sounds like DKA to me(an emergency).

Jen, you are not being unreasonable or mean. After dealing with T1 D for nearly 50 years I categorically believe that the demands placed on someone with diabetes are that person's responsibility. Any other ancillary support either through a spouse, friend or family member is at best icing on the cake.
Dealing with D is tough, no doubt about it. But if a person with D refuses to play a (the) major role in their own treatment there really isn't much anyone else can do.
I hope the situation improves soon. Best, Daniel.

This is a tough one. I endured kidney failure and dialysis for 14 months and then miraculously healed. My kidneys failed due to a blood clot in my lung following cancer surgery. (They think the db had very little to do with it).
I am single and yes, took care of everything by myself. Since I acted so brave and independent, my friends and family thought dialysis was no big deal. Go figure.
Sometimes kidney failure causes your potassium levels to be high, which can cause major psychosis and abnormal behavior. Is he following the renal diet?
It sounds like he is passively suicidal and has simply given up, particularly in not following through with the transplant evaluation. He needs psychological help.
But then, where does all this leave you? 6 kids are a lot to keep track of, not to mention the stress of seeing your husband willingly deteriorate.
The dialysis sessions often leave a person depleted and nauseous. But, be sure the nephrologist knows this. Often times, taking off too much fluid will cause distressing symptoms.

Thank you for responding. I am having a hard time dealing with all that is going on. We just, and I mean just had another episode. He was laying on the couch and I told him that someone was coming over. He was acting low so I asked to check his sugars. He was taking his hand away from me and hitting me when I tried to check them. When I was finally able they were 44? I have been at 44 before and have not acted like that. Anyway he wouldn’t a take a glucose tab(which he threw) or drink juice. He wouldn’t let go of my hands to give him a glucagon shot. I was able to check them again and got 49. I have had diabetes for 13 years and I am still in control in the 40’s. Does this change the longer you have it? It really was the 40’s because I even used a different machine just to be sure. What is your experience with being low? When does it affect you?

I am so glad that your kidneys healed! Cancer, diabetes and kidney failure that must have been so hard to deal with! I hope you are doing good with the cancer also?
To try to understand him I have asked myself what type of dialysis would I choose if it was me. And I must say, I couldn’t. I do not want either. So I know this must be so hard for him. I try to remember that.
He is not following any diet. The only good thing is that he quit chewing. The doctor does check his blood once a month and so far all the numbers are good. At least that is what my husband tells me.
My mom thinks he has given up too.
Not sure how he can give up with six kids?
Thank you for writing back.

Typically the longer a person has had T1 D the less responsive they may be to symptoms of low bg. For example years ago I would notice I was low when my bg's were in the 70's to low 80's range. Now, and after nearly 50 years of D, I may not notice a low until I've hit the low 40's, upper 30's region. It can be a dangerous situation so I typically test a minimum of 10 to 12 times per day. I know of a few long term T1's who have hypoglycemic unawareness which means they experience no symptoms whatsoever when their bg's are exceedingly low.
A number of years ago I fully realized that lax D management was not only hurting myself but also those around me such as family and friends as well as my spouse. Therefore I felt a distinct need to take good care of myself. In other words, even if I wasn't concerned about myself I at least felt some responsibility to my loved ones. That realization helped me immensely.
It sounds as though your husband is severely depressed. I've been there too so I understand how difficult effective D management can be under those conditions.
If you need further support or just want to talk feel free to drop a line. Best, Daniel.

It is hard to belie that he is not on a food plan. But, if his numbers are good, then I guess he doesn't need to be. My center did monthly labs also. I was not allowed to eat foods high in potassium such as citrus, tomatoes or potatoes an also allowed only one small serving of dairy per day to control phosphorous levels, and no diet cola, which is also high in phosphorous.
Sometimes, when faced with an enormous challenge, it's right in front of our face and we can't see anything else (like wife and kids).
Dialysis is a huge dose of diabetes reality.
I will send you a friend request. If you want to talk privately, please p.m. me.

((Hugs)) it is very hard to be the caretaker of an ill person. I can't remember the name of the board but I found one for spouses of chronically ill people. It is different to take care of a spouse than it is a parent (which is hard and I have done both). Having support from others going through the same thing is really helpful to your sanity. Just because he is sick doesn't mean you deserve abuse.

It sounds like your husband has depression which only compounds all the actual symptoms he is having. It also makes it harder for you since he isn't actively participating in his care nor in your household. You may want to speak to his Dr. about his depression. There may be something s/he can do to help.

Sadly, during this trying time, your kids need to help out as much as possible. No, it isn't always fair. Yes, it is an added burden during a time that should be more carefree for them. My younger daughter has told me that she doesn't harbor any anger, disappointment or anything else and is happy she was able to help. In fact, she and her sister conspired during the last few days to sit up with their father so that I could sleep. My older daughter was in the service during the last few years and wasn't available for constant caretaking but my younger one was. Simultaneous to their father dying their grandmother also was. So between caring for him we also spent some middle of the night vigils at the nursing home with his dying mother.

There are numerous things going on with your husband and you can't control what he does. You need to care for yourself and your children. Assist him but absolve yourself of the duty of taking care of everything. Being this ill and still working is probably taking a lot out of him so if he nicely asks you to help him out that is one thing but if he is refusing to take care of his own BG (lows can make you combative so he needs to be working at not getting that low) and other needs you can't feel responsible for them all.

Someone once told me your children don't have a choice but your husband does. I chose to divorce my husband while he was chronically ill because he punched one of our kids. My kids were both minors, they had no choice. We still took care of him but he had to live in his own house until he was terminal and bedridden.

Thank you for the reply. I will look for that group. I am sorry for your loses. That must have been so hard.
I feel that I am not handling this very well. I still feel guilty about not making sure he gets everything done. He has done nothing but sleep today. And take two showers. And beat up the dog. I am still not sure what the dog did. I know he has not checked his sugars today.
Should I make his appointments for him? I have been after him, asking him when he is going to get his blood drawn and finish some other tests he needs for the transplant list. Did you make appointments for your husband? If he doesn’t get a kidney this will never end. But I had made the first appointment for him and he canceled it twice. Makes me feel stupid.
It doesn’t help when I talk to his mom. I tell her some of what is going on when she asks and I feel like she is blaming me for not making him do it. One time I just told her that I can not make him do anything. She is a good person, and she said she understands. I guess I just feel guilty anyway.
I keep thinking if I leave it up to him and he dies, am I going to feel guilty. Will the kids blame me? Will I blame me?

You can not do this for him. He has to want to do it for himself.

You need to start thinking about yourself and your children. If he will beat up the dog any of you may be next. Please get to a safe place. Staying only enables him further. If you chose to stay, can you find a place for the kids? When he gets combative in the future please do not try to get him to do anything, call the paramedics and let them deal with is lows, a trip to the hospital may b e needed to get him the services he needs both for his sugars and for his psych issues.

Huggs- this is never easy. It is not your fault, you have no control over what he chooses to do. Your children need to be safe and they will not blame you for keeping them so. Remember that they are living through this too and can see what is going on.

Be strong, stay safe.

Jen, a lot of it is you feeling guilty. I didn't make my husband's appointments until I had to be the one driving him. When he was still able to get himself places he made them. When I had to do it then it needed to be to my schedule since I would have to take off from work. I'm assuming that your husband is still able to drive since he goes to work so he should be making his own appointments.

Since he isn't feeling well and may be forgetful remind him once, at a time he can call and schedule or go, that he needs to do something. After that, it is up to him to remember. I have to make my current husband track his own appointments (he has traumatic brain injury and can't remember things). I remind him more often than I would only because he truly can't remember stuff and is never combative about it.

If his Mom feels like someone needs to be doing something to get her son the care he needs perhaps she can help. You can assign her the task of getting him in for his blood test. This may get that job accomplished without it being on your plate and/or make her realize what is going on so she can be more sympathetic to you. Some of it may be your own guilty feelings but she really may be critical and until she walks in your shoes won't let that go.

Guilt is a biggy and it can eat you up. You need to know that his illness is not your fault. His lack of self care is not your fault. My kids were able to place blame where it belonged and never faulted me.

My ex made bad choices. He had bladder cancer. After several surgeries to remove cancerous cells he was told he needed to have his bladder removed. I told him that he needed to do this and I would stick by him the whole way. My current husband told him that he needed to do it so he would be around for his kids. My ex didn't want to carry a bag around and with his multiple sclerosis they couldn't create an internal bladder. He waited a year and then decided he might go ahead and do it (this was after he was back in the hospital for them to remove masses from his bladder that prevented him from peeing). It was too late though, the cancer had spread.

Most likely, your older kids get that you have tried and couldn't get their dad to do what was needed. Having them help with more responsibilities will make that really sink in. I mean if they can't get him to do it and you can't maybe it is just his choice. You also need to realize that you cannot make a grown man do what you want. Therefor it is not your fault.

Your husband's behavior will likely keep him off the donor list. They are rather picky about who makes the list because it is so hard to get organs. They don't want to put them in someone who doesn't take care of them. My BIL is meticulous in caring for his new kidney. He was way down on the donor list when it was discovered a relative was a good match so he got his kidney. Otherwise, he would probably have died before making it high enough to be typed and possibly get one.

I'm concerned about him beating the dog. Yelling, while hurtful can be explained to the children. After all, he is very sick, scared, and angry. Beating on something defenseless is not appropriate. Remember, the kids don't get a choice where they are at. Your first responsibility is to them since they are dependent on you for their well being. Being in separate homes may help give both of you some perspective and let the kids feel safe. You aren't a bad person if you leave someone who is ill because they are abusive. I have never had anyone say that to me.

Here is the harsh reality of his problems and the outcome, he’s going to die period. The way I see it, you may be better off of without him, being a millstone around you and the kids dragging everyone down.

He never accepted his diabetes and never will.

Thanks for all the replies. I may not answer back, but I read and consider everyones thoughts. As of right now I am not sure of what is going to happen. He ended up in ER on Sunday. He was sleeping and his sugars went low. He doesn’t wake up for them anymore.

((Hugs)) I'm sure this is all very hard on you and the children. Make sure you take some time for you and the children to do something, even if it is just a little time at the park or something.

Well said, Kathy. I lost my Mom to kidney failure, but she was 89. She had periods of dementia as her kidneys failed and she wasn't even diabetic. So I can imagine the combo of a low and progressive kidney failure would be devastating.

My dad Was diabetic and poorly controlled and I will say that my Dad pretty much gave up after his second stroke, which made my mother's life hell for the following 8 years before he died.

Each of us is full of light and dark. From a distance, I can feel compassion for your whole family. Up close, I'd love to be an outside force that could ride herd on your husband, getting him to appointments and metaphorically whacking him upside the head to take his meds, while giving support care to you and your kids---like cooking and cleaning (a Rule from Mom: "When there is Trouble in the house, move into the kitchen and keep it working smoothly.")

Now. Are there such support services available through county or city agencies in your area? Before my Mom reached the hospice stage (all covered by Medicare), we found a few amazing support programs like caregiver relief through the county. Or perhaps support groups for families of dialysis patients?

I wish I could be of more help. Your story is heartbreaking. But I bless you for your courage in reaching out to us. Please keep us posted.....Blessings on all.....Judith in Portland

you do have a heartbreaking story.
I can only second what the others said, you can not take care of his Diabetes for him, neither of his Kidneys, it is his health and you can only support him.
Make sure this does not wear down the kids too much, they are the most fragile part of your family, and it is important that they know that it is never their fault when daddy gets angry or stuff like that.
Praying for you, that you can stay strong in this situation and will make a good decision on your future.
Also, do not feel scared to reach out to local agencies helping people in your situation, i know it is easier here in the anonymity of the internet, but we can give no more than mental support, the other support must come from people in your area, who are locally closer to you than us.
We are always here for you, hugs

Just thought I would update. My husband switched back to hemodialysis. The other one just was not working. He seems to have gotten a little beter. He did call into work today though because his blood pressure was 214/108. He called his nurse and she told him to go to ER, but, of course he didn’t. He checked it awhile after and it is starting to go down: 185/ 9?.
Should I encourage him to go on disability?He is the only one working and I stay home with the kids. But he has been calling in so much. I have considered going back to work,(I quit after #5) but my youngest two are 1 and 3, which means I would have to put them in daycare. Plus when I think of someone else raising my baby, I get sooo angry with my husband. He is my last baby, I do not want to give him up. I had planned on going back to work, just when the baby was older. Maybe I am just being lazy.
To top all this off my second oldest daughter has just been diagnosed type 1 also. She is not on insulin yet. But it will come. Doctor is thinking of putting her on a low dose of lantus to save islet cells. That makes three type 1 and one type 1 1/2.
Really I need to stop thinking or I will drown.

Love you and yours...What you are dealing with is very complex. Please don't blame yourself. Of course you need to interact. But you really also need to make the effort to explore county/city/federal resources for relief care. I mean it. There are possibilities. You must have someone nearby who can give you support!....