Had to move on over here

[Vicky]

Hi all. 

I've been posting on the facebook group, but since there's really no way to make it private posts so all my friends can't read them, I figured I had better switch over to here since it will just cause more hate and discontent if my husband decides he wants to go back and read through what I have been posting about.

I'm still in a huge dilema, my husband won't get moving and get rid of the weight he needs to.  I can't hold his hand and make him stop eating so much and exercise more, he needs to be able to do it on his own, I can't force him. 

[Rodneyss1]

I'm sorry to hear that.  How much does he weigh and how much does he need to lose?  He can't get on the transplant list because of his weight?

[Vicky]

He's back up to about 300 pounds again.  He lost a good 50 then gained it all back over the last two years and then some.  It's been an ongoing battle, that he doesn't seem to want to participate in. 

It's a rough road and I'm at the end of my rope.  How long do I have to put my life on hold for someone who doesn't appear to give a crap about himself or me.  He told me one day he's just sitting around waiting to die because he has no control.  I LOST it!!!  I said ah yeah you do, you are the one who has to lose weight and take your meds correctly and get your poop in a group if you ever want to get qualified for a kidney and get off this damn machine and get back to a life you knew before.

[Sluff]

It's not as easy as it sounds Vicky. I'm heavy also and I try to lose weight but keep going up and down. I'm not on dialysis so I can't really compare myself to your husband but I personally feel like I don't care at times because I think we let depression get in the way. Sometimes we feel defeated just getting out of bed is a huge success. I'm not saying you shouldn't push a little but maybe some counseling and some anti depressants would help. With my job I don't get to follow the members very closely, so forgive me if you already posted and explained all this already. Hang in there. 

[jeannea]

I understand what you're saying. But I also understand how hard it may be for him to see the light at the end of the tunnel. It's so easy with this disease to feel like things will never change and all anyone ever wants you to do is give up food and give up freedom and give up control. Is he depressed? He may need to talk to his doctor about that. Many of us are on depression meds. I know you want to help him but he may feel you don't understand what he's going through so it's hard to listen to you. Maybe you can try to get him to tell you why he eats - maybe he feels it's the only thing he can control - and then start from there to help him.

[Vicky]

He's on 300 mg of wellbutrin a day day.  He refuses to go to counseling.  I can't get him to get out and get moving.  All he will do is lay in bed and watch tv and eat or be on the computer.  I work, take care of him, take care of the house, and I can't stand by anymore and watch him destroy himself.  The only thing he will help me do around the house is empty the dishwasher and that takes four or five days after I've run it.  I'm not asking for the world, just for some help and to show you care at least a little bit about me to want to lose the weight and live.

[woodsman]

Take the lead and make him go out and do things with you, MAKE him go, take a short walk, drive somewhere see some sights do anything to get him moving...

[cariad]

This is a tough one. He is telling you he is depressed (just waiting to die is all but announcing it) and you sound a wee bit depressed as well. Are you in counselling? It's not for everyone - I never found it helpful, so while I did try it, I found it to be a huge waste of my time and only made me angrier and more withdrawn when people around me (my husband) would just throw out counseling as the solution to a very complicated and debilitating health condition. I also tried the drugs, including Wellbutrin. It sounds like the drug is not working for him and he needs to return to his psychiatrist and get a proper med check. If he is not seeing a psychiatrist but getting these drugs from a nephrologist or GP, that is an invitation to misery. Mental health is a specialty like anything else and should only be attempted by a board certified psychiatrist.

It sounds to me like he is trying. He is taking meds and that is more than many will do. I see you both falling into an endless cycle of nagging, withdrawing, and resentment building everywhere. Losing it with him after he told you something so personal may have made you feel better in the short term, and is completely understandable, but if you put yourself in his shoes for a moment, with his battling two diseases, it is not what he wanted to hear from you and will do nothing to change the situation. Depression has nothing to do with caring for someone enough to get through it. Mental health issues and addictions share many components, and if you think of how many times an alcoholic's spouse might say "If he loved me enough, he would stop drinking" there is something similar (not identical) going on here.

I guess my question to you is do you want to save this relationship or do you just want out? (No need to answer me, but this is the question that I would ask myself in your situation). I have bad news for you - transplant is no guarantee that he will get his life back. Making it into this panacea, that if he would just do what it takes to get a transplant everything would be OK, could lead to horrific disappointment down the road. Weight is a false marker for health anyhow, I would make it totally about lab numbers and see if following a diet to keep his labs in line helps. It is possible to be healthy and 300 pounds, but that does not sound like your husband's situation. They may not put him on the list anyway, especially if he is non-compliant in other ways, but if he can show that his labs are stable and he is doing everything else, I would argue that transplant hospital down to ground over their weight requirement. Hectoring people about weight never works so try not to fall into that trap.

If you are really at the end of the line with him, you have to save yourself. If we were talking about my husband, I would give him a strict time limit to at least be on the right track, watch my own attitude (because I tend to lose it when I am frustrated as well), let him know that I am on his side and willing to help and encourage but that when that time limit expires I will be gone if I see no effort. Do try to keep in mind how exhausting kidney failure can be, especially if he has not been keeping labs in line. Many times I could only face eating certain foods, and they were never weight-loss friendly. It all feeds into the problem and he may be in a depressive vortex that he does not know how to climb out of. There are many caregivers on here, some with horrifically non-compliant spouses, so hopefully a few of them can offer their experiences. I was non-adherent most of my life - what turned me around was having a goal that was attainable (transplant through specific clinical trial) and also something that I believe monrein said, but I could be wrong. To paraphrase: in a marriage, each party has an obligation to keep oneself as healthy as possible for the other person. I totally agree with that, with emphasis on the as possible. I also believe this is a crucial responsibility that parents have with regards their children. So today if I had to go back on dialysis, I would be utterly ticked off, extremely depressed, but would grieve it all as quickly as possible and move on. (Again with the 'as possible'.) Good luck. I can only imagine how hideously frustrating it all is.

[Poppylicious]

Vicky, I've read through some of your posts on the FB page (and I think you're right, some things are best discussed in a place that he's less likely to discover!)

It is very tough to be you at the moment! 

Firstly, I would suggest that he needs to get his anti-d meds sorted out.  He may as well not be taking them as they seem not to be helping.  Secondly, stop pampering him!  Let him take back some control.  He may not do it correctly and he may mess up so that you have to step back in and guide him, but give him back control of his medication.  Thirdly, stock up on healthy foodstuffs that he's allowed to eat.  I noticed you said that you did that but he just went out and got what he wanted ... at least it got him off his backside and made him leave the house, eh? 

Does the weight conversation come up everyday? Does it always begin in an accusatory negative fashion (or one that he perceives could be accusatory and negative?)  I didn't have to lose weight for anything but my own health and I HATED it when my mum, or someone else close to me, brought up my weight.  It's humiliating to be told that you're too big by people who should love you for what you are, not what you could or should be.  And when they appear to do it constantly (even in a loving, kind way) it makes you feel even worse and more resilient to change.  For him there's the added pressure of needing to lose weight to be considered for transplant (I'm assuming).  Pressure can make everything so very daunting. Stop talking about it.

I have learnt with Blokey that it's best not to nag him.  I bite my tongue and stop myself from saying, 'But you're not allowed that!' (he would disagree with this, so I must still cast him disapprovong looks sometimes!) and I let him get on with it.  I can't live his life for him and I have to allow him the occasional mishap.  I am following Weight Watchers and on the days he's not at haemoD, Blokey eats what I eat (except for foods he's not supposed to have).  For anything else, his portion sizes are MY portion sizes.

Does he actually WANT a transplant?  Have you sat down and discussed how you BOTH feel, without arguments?  How you feel now, how you would like to feel now, and where you see your future together, with or without a transplant.  If you find it difficult to do so, you could write each other a letter.

I like woodsman's idea ... have a day trip!  Drive somewhere (a local beauty spot, a museum, etc.), take a short walk, enjoy a spot of lunch while you're out.  Try to re-engage him in life beyond the home.  Try to help him see that he can still live a decent life, even with ESRD.  It may not be a perfect life, and some days may be absolute sh!te, but it is still a life worth living.  He doesn't need to just sit in front of the tellybox / computer all day.

As his wife (not his caregiver) you need to be there to support him in all possible ways.  He needs to feel able to lean on you (but not too much, give him back some control!), but likewise you need to feel able to lean on him too.  He should be supporting you as well.  It's a tough situation, Vicky.  I really do feel for you, but I'm not sure there's much you can do until he wants to do it himself, for himself.  All you can do in the meantime is prop him up and forgive him his foibles.  Unless you do want out, and you want reassurance that that's okay.  And it is okay.  It's not nice for any of you, but it's okay.

Sorry, I seem to have gone on and on and on! 

*huggles*

[Vicky]

I do up his med boxes for two weeks at a time.  Then there are some he has to take other times of the day and he won't take them unless i open the bottles and say here, and i can't do that all the time, I work and have other obligations in my life and I feel that at 57 years old he needs to step up to the plate.  I know I may sound selfish but I'm tired of being the "mother" instead of the "wife."

He refuses to go to counseling so the neph gives him the wellbutrin, it was originally to help quit smoking then they bumped it up to help with the depression.  he doesn't necessarily sound down he just won't do anything.  I know it's a lot easier to get in a rut then it is to start digging your way out, but I can't do that for him either.  I can't get him to go for a walk with me. 

When he was going to the gym I would have something to go do and he would be sitting outside in the truck reading his newspaper and then he would wonder why i got upset between not doing as he is supposed to and wasting the money on a gym membership. 

We've been together three and a half years now and every time I have said ok you need to do this it's been so maybe it kicks in how much of a pain in the ass it is and he'll start trying to fix it to get better and feel better we end up either in the hospital or on hemo again because everything goes out of whack.

I've come to the point I'm tired of arguing with him over everything to do with his health, it all affects me, but he doesn't seem to care.  I try my best but my best doesn't seem good enough.  So do I throw my hands up in the air and walk away or do i keep suffering through this too?

I told him two weeks ago that this was it, either he changes and starts exercising and stops opening his mouth every time his elbow bends and helps me around the house or I can't do this anymore.  Yesterday he laid in bed most of the day and was eating in there, so it tells me again that the false promises are ringing true again and soon I won't be able to do this anymore for my own health.

I'm literally at the end of my rope.  I have lost 20 pounds in the last two weeks because I can't eat because I'm so stressed out.  I hate to walk away but I need to be happy to and being with someone who doesn't care about himself or me is not the way to live, so I will be going, just have to get things in line so i can..  This is no life for him or for me.

[Jean]

Vicky have either of you thought about a lap band procedure or something on that line. It really is hard to diet, I know that, but wow, 300 pounds!!! If he is not at least 6 ft 7 in that is grossly overweight. On the other hand, if you cant do it any more, you cant. Survival is the name of the game. I wish you courage and good things in your life.

[Rerun]

Move OUT!  Leave his fat ass.  IT may wake him up.

   

[paris]

I feel that you can't make anyone do anything that they aren't committing to first.  It is so frustrating.  I had to give up so much for kidney disease and it makes me frustrated that some can't give up amounts of food -- not the whole thing, but some of it.   And depression in others is very hard to handle.    I think most of us have been in similar situations and we feel for you.  He has to decide if he wants a new kidney so much that he will do anything to get it.  There is still lots of work after transplant to keep the new kidney healthy.

Glad you joined us here.  I can say things on site that I would never say on facebook.  It is a great place to vent, complain, cry or scream.  Keep posting.

[monrein]

Vicky, why on earth are you "doing up his med boxes"?  Were his hands amputated at some point?  I admit that my bias about chronic illness or "disability" of any kind is that the "patient" needs to be as independent as possible and do everything they can in the way of their medical stuff.  This is for all kinds of reasons including the reduction of stress on a relationship.   Our partners ought NOT to become our parents.  I mean we can and would do any number of things for those we love if they were incapable of doing for themselves but, heavens above, we should not allow ourselves to be made in to babies and those who love or even just like us should refuse to let that happen too.

You aren't being at all selfish.  You've been together for 3 years....what's in this for you?  He may very well be depressed, I highly suspect that he is despite not seeming "down"...extreme lethargy is a prime symptom, but assuming too much ownership of his responsibilities leaves him struggling against you instead of facing the struggles for himself.

Your situation is a difficult one and I don't know how old you are but I think you deserve more from him.  We patients can't help being ill but when we stop trying to help ourselves and thereby burden others we are not being fair.  One way relationships most often end up in dead end alleys.

[del]

Vicky it has to be up to your partner if he wants a transplant.  No amount of nagging is going to make him lose weight if he doesn't want to.  In fact it may only make things worse.  For a while first when hubby started dialysis I thought hubby should have a transplant and I sort of pressured him.I was a match and wanted to donate but he didn't want the kidney because he was scared that something would happen to me.  He has decided he does not want a transplant and has talked to the nephrologists and they agree that he is doing so well so why rock the boat.    A transplant is not a cure it is still just a type of treatment for kidney failure and it can carry with it its own type of problems.  It has to be his decision what type of treatment he does.

[jeannea]

I wonder where your compassion is. I have to disagree with many here. You're going to leave him because right now you're not getting the benefits you want out of marriage. You can't give him some time to come to terms with a devastatibg illness? When I was diagnosed it was 6 months before I stopped crying over everything. If you had cancer and you were vomiting and exhausted and couldn't do many wife things, would you say he should leave you? You don't say how long he's been depressed but he was probably different when you married him. Although maybe that's just me assuming you're married.

To me you sound a little cold. Sorry. But I guess if you really don't love him you should be honest and leave.

[Vicky]

He has been on dialysis for 2 1/2 years now and continually gained weight.  I have had great compassion through all of it.  When i was working full time I would come home for my lunch and set up his machine and get everything else ready to go then back to work without five minutes to myself.  I have done this for 2 1/2 years and I can't take it anymore.  If he won't help himself I can't do it for him.  Where is his compassion for me??  Last winter I was so sick I missed a weeks work, which is highly unlikely for me.  I still had to get up and cook the meals, take my daughter to and from work, set up his machine, and everything else entailed in "wifely duties" around the house.  So if he can't have compassion for me for one week, including asking for some ice cream since I hadn't eaten in three days and about four hours later I got it, I'm not sure how I can have compassion for him anymore.  Am I responsible for everything to make the home work, and work outside the house, and everything else in my life?  Shouldn't it be 50/50 in a marriage not 99/1?  How many of the dialysis patients on here still work, still go out and exercise, still carry on with their lives despite everything?  How many take care of themselves so that they are around?  How many want to see their spouse walk away because they can't seem to get their ass in gear and do what is needed to get better? 

If I sound cold, maybe I am, maybe I"m just sick and tired of being the bad wife when something doesn't get done.  Maybe I"m tired of being tired all the time and not feeling appreciated.  Maybe I'm tired of stopping my life and watching my husband lay in bed all the time and do nothing but eat and sleep.  Maybe I'm tired of not getting any help around here.  Maybe I'm tired of his spending so much money on junk food.  Maybe I'm tired of everything.  If that makes me cold then so be it.  It always comes back to walk a mile in my shoes.  I'll trade anyone right now, because my "soul" is worn off my shoes and my "soul" is beaten into the ground.

[Deanne]

Vicky,

You sound miserable! Is there any way you can leave for just a few days to have some time to yourself away from all of this? Maybe leaving him is the right thing to do. Maybe you're just in the midst of it right now and with space you'd decide you want to try something different with him. How can you think clearly when it's all so in-your-face though? Most of all, it sounds like you need some time away just to find some inner peace.

 

[del]

Vicky, Have you talked to hin about taking more responsibility of things.  He needs to know how you feel.  If you refused to set up the machine would he do it himself?  Try it and see.  He'll soon get feeling miserable enough to try to do it himself.  If he is home all the time he can manage to do a few chores around the house no matter how terrible he feels. Sounds to me like he is just feeling sorry for himself.   You don't need to be his mom just his partner.  Hubby and I have been doing the dialysis thing for 14 years and things have never been like you describe. Hubby does get depressed sometimes but when he does he feels bad for me.  When I am working he does things around the house - except for cooking or laundry!!  He can manage to make breakfast or a sandwich for himself.  I do not have to do anything like shovel snow or outside stuff except for when I want to.  If I was sick and wanted something to eat and had to wait 4 hours for him to get it for me he would be much sicker than me by the time I was finished with him!!

Try having a good talk with him where you lay out all your feelings.  Tell him he has to take some responsibility and make clear what the consequences are if he doesn't.

[paris]

This forum is a safe place to vent.  I think you have done more that your share of helping him through this.  I'm the patient and I never want others to touch my pills, fill my meds or anything like that.   It is my body and I need to beable to recognize by sight what pills I'm taking and what their side effects are.   I'm sure he is tired, BUT.........he needs to step up and claim his responsibility in his life. 

Please keep posting.  We all understand that some days are so overwhelming and it is hard not to feel a little bitter or hurt.  Men tend to hurt more, need more, and sicker than anyone else could be.  (sorry guys       I'm not talking about any of you here!!)     You need some time for yourself.  You need to renew and refresh your mind and body.     Del and Monrein have given you some good advice.   

[Vicky]

He does set up his machine now.  I was doing it for a long time then I stopped because I broke my arm and couldn't lift the bags anymore tho he wanted me to!!  I took over again when he got so sick just before Christmas because he wasn't doing it right again.  I was out of town for 22 days with my mother in intensive care from sepsis and he had to start doing everything for himself.  I came back and it was the same ole same ole i was here i had to do it, it took me a week to get my house cleaned!!!!!!!!  I about flipped out.

I have tried and tried and tried to talk to him about all of this and how it makes me feel, but it falls on deaf ears.  It is good for a few weeks then it's right back to him in bed all the time and "I don't feel good" sorry i didn't get this done or that done.  I don't feel good either some days but I still get up and go to work and clean the house and bartend and volunteer work.  I just can't handle the empty promises anymore.  So I'm setting aside a little money to get my own place and I have to go for my own sanity and peace of mind.  I haven't been able to eat for two weeks for the most part a bite here and there every two or three days and I've dropped 25 pounds, that is not healthy at all so I have to go so that I am happy for a change.  I feel guilty but I need to be somewhere where I am loved and feel loved and appreciated instead of just taken advantage of.

[del]

Vicky, if he can deal with doing his own dialysis when you are gone, there is absolutely no reason he can't do it when you are there.  Sounds like he just doesn't want to most of the time.  We all have days when we don't want to do things but life doesn't work with us just doing stuff when we want to do it.  Hopefully some day he will appreciate what you have done for him. 

[Vicky]

Unfortunately it will be too late.

I work at our little airport here and since the floating on the river is over now and just have a few hunter trips in between now and november.  I started a new job at one of our gas stations doing the books a few days a week, I think I'm going to go up to the fire camp and work there the rest of the days since that job will be through the end of november since we have such a huge forest fire just outside of town.  That will be the extra money I need to be able to go.

It's sad to see a marriage dissolve, but it's been way too long since I've had a marriage instead of just a housekeeping and nursemaid job here.  My only question is how do I get past the guilt of leaving.   

[looneytunes]

Vicky, a lot of us totally understand how you feel.   This life is not an easy one and when your husband is not doing all he can to make it the best it can be, well, that makes it an even tougher life.    I so agree with Paris  "Men tend to hurt more, need more, and sicker than anyone else could be.  (sorry guys       I'm not talking about any of you here!!)"     

Maybe if you tell him you are contemplating leaving him and your reasons for it (the empty or short lived promises) he will take you seriously.  After all, if you are not there doing it all for him, he would have to do it himself anyway.    Then, if you can have a meaningful discussion about what your expectations are of him as well as his expectations of you, and he says he is not willing or able to change things, maybe you won't feel so guilty about making a decision to leave.  Maybe he really does not want a transplant.  Or maybe he feels food is the only vice he has left.  Or maybe he doesn't feel like he deserves someone like you and he is unconciously sabotaging your relationship as well as his chances at being healthier.  One never knows what another's psyche has going on in it.   

As a care partner, I know that you can not help someone else if you are not strong in yourself.  It sounds like you are worn down and the stress of the situation is eating you up.   Maybe a short weekend break after the discussion would do you a lot of good plus give you some "think time".  But the bottom line in this is that you have to do what is the right thing for you. 

Many hugs being sent your way.   

[Vicky]

We've been to this point so many times over the last few years in our relationship I don't believe him anymore.  It's been less than two weeks now and he's already back to laying in bed all day.  I can't be there all day and make him get out of bed. 

I'm now working on getting my self together and getting somewhere to move to.  I have family here so that is a plus, but he doesn't and that makes me feel guilty!  I have to be happy, he deserves to be happy too, the happiness is just not there between us anymore.  So I have to lick my wounds and move on.