I don't even know where to post. Marriage type I, CKD, end stage renal failure, dialysis.. Grrr

Screen name says it all! I'm a type II (19 years) married to a type I (30 years).

In a months time we went from everything was "fine" to scheduling a surgery for Peri Dialysis on the 6th of Dec. His body is just quitting on him. Meanwhile I've been off insulin for almost 9 years, and my normal BG's have started creeping up. I'm usually under 110 fasting now I'm in the 130-160 range. Stress I'm sure isn't helping.

With all these changes happening I'm very much being supportive, and trying to behave as if everything is ok. In truth I watched my daughter 7 years ago die from renal failure. I'm freaking out, I'm worried about his health. The decline I've witnessed in the last two weeks is the most troubling. He barely speaks to me, make no effort of contact, spends all his time on SecondLife. Now I know he doesn't feel well, but I'm scared and lonely too, and I miss my husband. How do I gently let him know that I need him to be here for me too. I've done everything I can do to support him and give him the whole cheerleader routine. I cannot lose him too either to the kidneys or neglect.

I am not a subtle person and I don't want to hurt his feelings or make things worse. Please someone help?

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I know your upset, I just had a liver transplant in July and my wife has been there by my side, he needs you, he is battling his demon's every day there is a war going on inside of him, some days he makes his bead in heaven and on other days it's in hell. I can only tell you that he is facing his mortality, and this will change him forever. I'm a christian so I have someone to lean on and speak to anytime everyday good times and bad. The Lord gives me comfort and strength , and my Church stands with me.

Go to Church...Stand in the Lords light...put your problems in His hands...the Lord will carry your burden for you, just give him a chance. Find a quiet place in your heart and ask Him for help and guidance. if you have faith He will help you. Don't give up there is a bright warm light at the other end of the tunnel.

Missed John's reply here while typing mine and making coffee, getting dog groomer arrangments made but I have to respectfully suggest that going to church may help T2wifeofaT1 feel better but is not going to cure him of what sounds like a serious mental health situation, involving replacing real life with "Second Life". The OP didn't exactly explain the BG situation for Mr and whether or not that is involved in the kidney problems (w/ the daughter, perhaps there's a genetic tragedy of some sort of non-D kidney situaion?) but, since she mentioned neglect, I think that fixing BG is going to require some powerful motivation and, if it's an unregulated BG situation, he's not going to get fixed @ Church unless he is willing to try it or unless the church will send people to help stage an intervention or something like that.

As in Kindertotenlieder:

Now the sun wants to rise as brightly
as if nothing terrible had happened during the night.
The misfortune had happened only to me,
but the sun shines equally on everyone.

You must not enfold the night in you.
You must sink it in eternal light.
A little star went out in my tent!
Greetings to the joyful light of the world.

I think the light is in the world. If a church can get you there, that's great but it's not clear to me that the guy is that motivated to seek a spiritual solution while it seems, based on the limited information here, as if he needs help IMMMEDIATELY!!

We belong to and go to church. I'm the one losing faith not him. He finds comfort there I do not. After the last 7 years I just can't wrap my mind around what my family has been through. It's been one bad thing after another. I've lost a child, a husband, gotten a brain tumor, dealt with my new husband being type 1 with no insurance or job for 2 1/2 years... I could keep going on about the things that just keep going wrong but it's just not worth the key strokes. I'm trying to be faithful but I'm struggling.

I'm very sorry about the loss of your daughter and Mr.'s travails and the challenges you face. Re your BG, I have T1 so I'm not sure about T1. If you weren't taking any meds, controlling it with diet/ exercise/ oral meds, perhaps it's time to consider insulin. Even if the elevated BG is due to stress, I don't think it's good for you. I've read here @ Tu about other T2 whose docs don't get concerned about sort of middle hundreds for people with T2 and will let you roll along with BG levels I'd fix. If you fix them and the stress gets better and your BG runs too low, perhaps you can stop w/ the insulin but to me, it seems like keeping reasonably normal BG is the most important part.

Re Mr, it sounds like you need to confront him. I'm a shade older than the "golden age of video games" although I have a wii and beat all the screens on Mario Kart and have played a little bit. Nothing like Second Life though. I think you have to confront him and he probably needs to confront himself. Are the kidney problems diabetes-related? If they are and he's not taking care of himself, I think he needs to change that for the better but I know that diabetes can be very challenging. I've always had hobbies to motivate me to keep my BG in line, even when the "hobbies" were wild parties, they provided some motivation to keep my BG in line so I could pass out from partying, instead of my BG. I don't think that "Second Life" is a really valid activity for a grown man, particularly one whose wife is needing some help. It sounds like he needs a mental health professional, besides the nephrologist. I hope you can get him there ASAP!

They of course don't want to do anything about my BG I'm used to this.

As far as he goes, he is in therapy. He does not take very good care of himself, and has relied on me or other people around him to help him take care of everything. So I'm frustrated. Not til this diagnosis did he start taking anything serious. I'm working on remaining calm and not pushing or judging but if he won't change things himself there's nothing more that I can do.

The kidney issue is diabetes related for him for my daughter is was not.

The video game isn't a traditional video game, it's like a 3D style social network thing. He goes and talks to people for hours on end and just doesn't speak out loud. I know it's his escape but I don't have any. So it's making me a little crazy since I'm the one who has to keep an eye on him and make sure that he's testing and paying attention.

I just feel like I'm rambling now. Ask what ever you like.

You say "they" don't want to do anything about your BG. It's your diabetes; if your numbers are higher than you wish, you need to advocate to be given whatever extra help you feel you need to manage your blood sugars. Doctors are notoriously complacent about Type 2's with high blood sugar so it's up to you to speak loudly.

As for your husband, I'm very sorry all this is happening and I can only imagine the million different contradictory things you are feeling. You say, "I know it's his escape, but I don't have any...I'm the one who has to keep an eye on him and make sure that he's testing and paying attention." That is not true, he's an adult (I agree with AR about hours on gaming not being a reasonable behavior for an adult). You need to take care of you. As hard as it sounds you need to let him know you love him and will support him in what he needs to do but not "co" him by taking care of the things he is neglecting. You are his wife, not his mother. Find your own escapes, or work on your own health. Perhaps it would be helpful for you and he to have a few sessions together with a therapist to talk about your feelings about his neglect and how you can each take care of yourselves.

I've done everything except hold my doctor at gun point. I've controlled my for nigh on 9 years with diet, exercise, and just pure stubbornness. I think I'm finally coming the end of what I can manage on my own. I'm going to have to start thinking about insulin again and find a doctor who will take a cash patient who won't take no.

As far as he goes if I don't remind him he'll just lay down and die. If I don't make sure he's taking care of things he's not safe to be alone with the children, or to drive to work. If I don't make him food or put something in his hands he won't eat.

I'm trying to care for myself, and him. We do therapy together and singly, it's helped him it just makes me cry. Because it always comes down to why can't I just help more, understand more, and just wait a little longer cause it'll get better. I'm exhausted.

No offense but if he is putting out in therapy things like "why can't you just help more, understand more, and wait a little longer" you don't have a very good therapist because any therapist worth their salt will call him on that - reminding him that he, not you, is responsible for his well-being, and reminding you that you are not a bad wife or bad person because you can't "make" him do what he should be doing to begin with. Instead you just keep trying harder and harder until you are exhausted and he keeps resisting more and more (for whatever reasons). Pardon my bluntness, but you no longer have a marriage, you have a mother with a recalcitrant child, or more accurately a dog that keeps peeing in its own bed. There is something very very wrong if he decides to lay down and die if you don't remind him. And my guess is if you don't make him food and put it in his hands, he will get hungry enough to find the fridge. Instead you are making yourself responsible for his life and he is responsible for nothing. And your own health and that of your children is paying the price. He is manipulating the entire household by guilt, and it is very unhealthy. Read up on codependency, go to a support group for wives of Type 1's or if that doesn't exist near you (check with the JDRF) to to a support group for wives of husbands with serious illness. If that is unavailable as well, go to an Alanon meeting which you can find in the phonebook. It is technically for partners of alcoholics but the same principals apply. It is a place where you can learn that you are neither responsible for another human being, nor can you "love them enough to make them do what they should" and that you need to take care of you, up to and including leaving if the situation doesn't get better.

Oh it's not the therapist saying those things. He's actually been a great help to me. Husband is just terribly stubborn. We finally were able to get him to start depression medication so it's gotten a little better.

You're the second person to tell me to check out alanon.

I dunno if therapy helps him if he doesn't take care of himself, to the point where he has complications to deal with. If the depression medication helps him "jump the shark" and start taking care of his diabetes, that would be great but diabetes isn't going to get better on it's own and requires quite a bit of input just to do ok. It's a lot of work *not* to do ok too but, if he's playing Second Life (I am familiar with the concept but the only game I got into was Civilization...most intensely with Civ 2, which was a *really* long time ago!!) a lot, to the point where he's not bothering to take care of himself, that doesn't seem healthy to me and may be a barrier to engaging with his reality that's going to overpower both your efforts and those of his therapists. He should hang out here, talk to people about getting his BG in order, get his BG in order and then think about whether he really needs to spend X hours/ week playing games. A big motivator for me to get more engaged with diabetes was seeing a couple of obituaries for guys who were like 37 in the paper a few years ago, listing ADA or JDRF for donations. Yikes indeed.

The medication is making a difference. The last couple days have been better, no lows. But there was a pretty bad high (500's) today. I found the trick. He bought a 82 Rabbit Convertible and is busy fussing with it.

I agree, and frankly, he probably doesn't have it in him to give anything to you right now--don't expect it. Therefore, you will have to seek support outside your family nucleus. If he wants to die, it is his choice. I don't want to judge that because I am not in his shoes. However, he doesn't have the right to bring you down and he needs to let his wishes known (in writing). I personally have everything in my advance directive. When it gets to the point where I cannot take it anymore, I will refuse medical intervention. My family respects that and we have discussed it.

You need to take care of yourself above all.





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