I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Vicky on August 28, 2011, 09:08:08 AM
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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.
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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?
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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.
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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. :cuddle;
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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.
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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.
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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...
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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.
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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*
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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.
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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.
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Move OUT! Leave his fat ass. IT may wake him up.
:twocents;
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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.
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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.
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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.
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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.
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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.
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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.
:grouphug;
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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.
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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 :waving; 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. :2thumbsup;
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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.
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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. :cuddle;
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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. :(
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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 :waving; 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. :grouphug;
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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.
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i have to comment here. forgive me if it doesn't come out right, i am on the second cup of coffee.
i have known vicky for almost 2 years. she is a dear friend. she has struggled through so very much she couldn't begin to post here.
lord, my head is full. i agree with ReRun. you cannot make an ADULT do anything. and worrying, suggesting, all the help in the world is not going to work if the patient doesn't want it. any nurse or doctor will tell you the same.
i see this here. patients come in the clinic doing fine. but leave their partner out in the heaps of snow or excessive heat, to get in the door by themselves. some are worse off than the patient! they are on crutches, in a wheelchair, etc. yet here is the patient completely disregarding their partner, as though they are a hired slave. one day i got mad and said to them: whats the matter with you? get off your butt and help yourself!". well, it worked.
we have been at this for almost 2 years. we got to a point where there was no marriage. only nurse and patient. i felt crazy alot. i felt trapped. there was no help, no respite, no concern for the caregiver. nothing but stupid comments like stay strong, stay positive, get your "patient" to do this or that, all of it BS to keep the caregiver doing what they do because no one else wanted to make any sacrifices.
i saw my DH doing this and finally got to the point of leaving. i bluntly told him he was either going to do what was required for his own well being, or i was leaving. i was not going to go down with him. i was willing to be there and help him, so long as he was willing to help himself.
this is not a helpless baby or child we're talking about here. this is an adult, with choices, and he is making the choice to do what he is, good or bad. and thus, he will have to reap the consequences of those choices.
there is a woman at the clinic, a wife, who has been caring for her husband for 7 years. same scenario. he is bitter, angry and non-compliant, and my guess from knowing him, is he was this way long before he got "sick". she is half crazed most of the time and he is a tyrant. but again, she allows it and makes excuses for him. i told her flat out, i will only stay and do this, so long as DH is willing to do his part. if he became this way chronically, (which is what vicky is saying) i would have no choice but to leave. and i wouldn't feel guilty a bit. because guess what? i am a human being. i am important and i have some rights and needs too. i told my DH that either he wanted a wife or a nurse, he couldn't have both. if he wanted a full time nurse, that could be arranged. he decided he wanted a wife. i think that was a good choice. because believe me, at that point i was ready to go.
i refused to stay doing all i do for him and the medical world and the unconcerned family, if he was going to become an infant.
when he was really truly sick, i nursed him. no issues. but i was always there pushing him to get going, not to give in. am i a hag? sure. didn't mind a bit. when he had recovered enough to be stable, you bet i was there not taking no for an answer.
what does he do today? he drives himself to the clinic. he manages his own meds and diet. he has not needed depression meds (though some counseling might have helped a time or 2). when he starts the laundry list of medical complaints, i tell him to call his nurse. i point him to his computer to do the research for himself. i remind him that he is an ADULT and what/how he does is largely up to how he decides to manage it.
i will put up with it just so long. i will no longer allow him or anyone else to manipulate or take advantage by guilt tripping me. if i am wiling to be here to do all this, damn it he will be too.
i tell you something i learned, and it may be just in my case, who cares. but when a person is dx with a long term illness, everyone is happy to guilt trip, praise, encourage the caregiver who takes it all on. because they don't want to do it.
we are a team, and the day he decides he doesn't want to be, is the day i say OK. here ya go!
in the beginning of this i didn't feel that way. but i do now. its just too much of a load to put on your partner long term without working together. the caregiver has rights and needs too and is a human being just like the "patient".
to qualify myself, i will add that i have survived many painful surgeries, 5 difficult C-sections, cancer, diabetes, spinal and heal bone spurs and a host of other ailments, as well as very rough life situations. i did all i could to take care of myself through this because i instinctively knew, "it was all up to me" on how i recovered.
and if recovery wasn't an option, then no one or nothing was going to deprive me of what quality of life i had.
i have been sober for almost 12 years. i learned early on in AA that my recovery was between my higher power and me. if anyone wanted to help me when it was truly needed, that was gravy. but in the end, it was going to be me WANTING to get better.
i think sometimes that if the nurses, docs, counselors would do this pushing when its needed, some of these patients wouldn't just give up. and they would view themselves as a person with an illness, not a illness with a patient attached.
when my kids were little and fell or cried or hurt themselves, i would come over and see how bad it was. i would hug them, then i would urge them to get up and keep going. not because i was a mean momma, but because i wanted to raise strong people.
there is just so much you can do for an adult though. you can only help someone who wants to help themselves, and only to the extent they are willing to allow the help.
sorry for the long rant. wheres the icon for a "soapbox"?
ps: two of my daughters are STNA's. they tell me that the patients who make it are the ones who keep fighting. the most difficult patients they have are the angry, bitter, self important ones who refuse to do anything for themselves and feel it is their right to use/abuse anyone within reach.
i can recall so many times of telling my own patients FIGHT DAMN IT FIGHT! FIGHT for your own recovery. I have said the same thing to women i have sponsored in AA. some, in the end, i had to just walk away from until/if they were willing. otherwise i was wasting my time and resources and they were better utilized on someone who did want to recover. its a hard truth, but there it is.
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with all this in mind..let me add i just realized my underwear are on inside out... :rofl;
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It really makes me angry reading all of these posts about patients who are selfish enough to not bother looking after themselves. I agree with monrein in that having a chronic illness does not give you an excuse to heap everything on a partner, and both patient and partner/spouse have a responsibility to look after themselves for the sake of the other.
I think about how effing hard I have worked for the past seven years to keep myself healthy so that I won't become a burden on my husband. For seven very very very very long years, I have done the diet, swallowed the 30 pills a day, attended all of my appointments, done all the paperwork, faced the fear, asked the questions, read the research, talked to the experts, all so that my husband won't be bothered by my ailment. On top of that, I do all of the housework and the gardening and everything that needs to be done to provide a gentle, quiet environment so that my husband can come home from work and relax. I come on here to vent so as not to interfere with my husband's peace of mind (don't get the wrong idea; he is very supportive, but one can only listen to me and my woes for a short time!). And then I read about these people who won't lift a finger to help themselves, much less help their healthy spouse. I do not understand it. And don't tell me about depression. I feel it, too...the depression, the anger, the resentment, the fear, but I'll be damned if I am going to leave my life in the hands of my spouse who, despite being supportive and kind and intelligent, is NOT a doctor and is NOT responsible for my treatment. Now, if I am deathly ill, that's one thing, but good dialysis is supposed to be restorative and not an excuse for sitting on your ass while someone else waits on you.
Just about everyone who posts on IHD is sick, but few of us sit around and do nothing. So while kidney disease may be a catalyst for some of these behaviours, I respectfully submit that the lazy toads with renal failure would find some other reason to be a lazy toad if they didn't have renal failure.
I don't mean to sound harsh either, but I personally cannot imagine putting someone I love through such a ringer. Sadly, out of the two of us, it is my husband who doesn't take very good care of himself, and I worry about the time that I have to become HIS caregiver, and I don't know if I will be in good enough shape to do that.
And I agree with The Noob when she says that people give lots of praise, encouragement and/or criticism to the caregiver in lieu of any real practical help.
All of this is enough to make you put your panties on inside out! :P
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Interesting perspective from everyone. This discussion is going into uncomfortable territory for me, because I do not believe it is possible nor wise or fair to generalize from one person's situation.
First off, I completely agree and have already stated that there is only so much anyone can be expected to accept, and if Vicky knows deep down that she needs to get out of the marriage, then that is a perfectly valid decision and I am glad to see that she is getting support from other members, especially Noob as they are already close friends.
However, I do believe that "doing everything one can" is a flat-out judgmental call and needs to be made by the people living the situation, not over the internet. Who is to say what one patient can and cannot do. Make no mistake, a person with suicidal depression IS deathly ill. I feel that if we let ourselves go too far into judging others in renal failure, we will find that those judgments will come back upon us one day, probably when we can least tolerate it. I have mentioned my viral meningitis and Gwyn's reaction to it before. Viral meningitis is not a serious illness, and the self-critical loop in my head that was playing after that incident was telling me how lazy I was for, to give an example, coming downstairs after Gwyn had made dinner, ignoring my children, sitting at the table and eventually just saying "I just want to go back to bed." To which Gwyn responded that I should do just that.
All I could think was what SHOULD be, that I SHOULD be over this, I SHOULD be back to full function and the fact that I was not made me fear that everyone would think I was faking (possibly Gwyn) and that this was going to be my life forever after and that I would better serve the world, or more importantly my kids, by finding a way to end it. I have been suicidally depressed and too ashamed to admit it. It does read as laziness. I had a debilitating reaction to Lariam after our African honeymoon, and this was before renal failure was coming back to haunt me. There was nothing physically wrong with me I guess you could say, but my mind was a deadly, hellish prison from which I could not escape.
One of the biggest barriers to completing suicide is, ironically, getting the energy to do it. Someone with that level of depression, which is what I am hearing from Vicky's description of her husband, coupled with renal failure, is in grave danger. They don't need the energy to complete suicide, they just need to do what is natural for profoundly depressed individuals, and that is nothing at all. Of course, that does not mean that Vicky needs to give up her life for him, and she should not stay out of fear that this or that MIGHT happen and she would therefore feel responsible for it (because it would not be her fault in the slightest!). I am all for putting on your oxygen mask first, and then helping your child or spouse or whomever. I think that even with my prolix style on this forum, I could never adequately describe what that type of depression was like, just that it was not a matter of won't do it was most definitely can't do. I think loved ones become traumatized, too, which is why I will suggest again that if Vicky is not in personal counseling (not couples counseling) that it is something to consider.
I doubt this really helps this particular, heartbreaking dilemma, but I needed to say it. Everyone who comes by here, everyone on earth, is a unique individual and we can only project so far. Patients do need to do for themselves, it is not just what is fair, it is so healing. Let's not forget, though, that there are instances where people look like they are just fine and SHOULD be able to do whatever, but what is preventing them from doing it is as real as cancer or kidney failure or any other illness you can name.
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WOO HOO MOM! You Go Girl! Did I tell ya I love Ya! :cuddle; :cuddle; :cuddle; :cuddle;
sad but true, a caregiver leaving the "patient" just might be what the doctor ordered. That in itself might just be enough to catapult them into caring about themselves rather than giving in to it.
so, Vicky has done her ALL, under very adverse circumstances (don't know if she posted this or not but when her H is on hemo at clinic, its a 3 hr drive each way, and this in the winter in the PNW).
And now that she is empty, drained, depleted, and ready to collapse, how much support are we going to offer her?
i want to know where the heck his family is? he has family. but like me, they have abandoned ALL of his care to her, without even a respite once in awhile.
Not too many years ago, when this happened, a good majority of families pulled together. everyone helped and responsibilities were delegated and that "patient" was not allowed to lay in bed and hasten their demise.
i live in an Amish community. just recently, one of the younger mothers (7 babies) was in the hospital for a week and is now home. while she was there, all the menfolk came and helped do the farm chores. the mother and sisters and other women cared for the children and home.
when i went to visit her a few days after she got home (took a treat to offer and pitched in to help too), there was all her sisters canning corn, minding the children, cleaning the house, hugging her as they went by, and the grandma was on her way. this young mother wasn't able to do much, but she sat at the table doing the mending. she threw a log in the cook stove every so often. there were books on the table she had been reading to the little ones.
outside, the menfolk were all working together, and this means even the little boy kids, all doing chores. and they were all smiling and happy! :grouphug;
each farm has a Doty House. this is where the grandparents/great grandparents live out their retirement. they still help out with what they can and are an active valued member of thier family and community.
we are not Amish. but if we needed help with something, they would drop what they were doing and come help. and be offended if we offered payment.
likewise, they have come to ask to use the phone, get a ride somewhere, and many many times we have helped with farming, frolics (barn raising) canning, doing honey, many times i have walked over and picked up the baby, changed a diaper, rocked it while mother did something else.
this is how it is supposed to work.
Vicky, and None of Us, should ever be left to fend for ourselves with no help or support system.
what the heck has happened to the Good Old Days?
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one of the biggest obstacles in this Cariad, is that the person in question is an adult, judged to be in his right mind, and therefore there is not a thing anyone can do for him until he is ready to do for himself.
even a nurse/doctor/therapist will tell you the same.
when my DH went through this, i urged him towards counseling, meds, etc. i asked the doc and the nurses and the SW. they all repeated the above.
i have had terrible times of depression in my life. unfortunately, some of those times took losing everyone and everything i had before i woke up enough to get help. all the good intentions in the world wouldn't do a thing for me until i was ready.
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Cariad, you are absolutely right in that there is great difficulty in defining what "doing everything one can" actually means; it will be defined differently for different people, and even the same person will define it differently in healthier times than they will in sicker times.
If Vicky's husband is indeed suffering from suicidal depression and resulting shame, then that is a horrible ordeal to live through, and I would fervently hope that that specific need be addressed. Your description of what that feels like was very eye-opening, and it does serve to remind us that all too often, a chronically ill patient's psychological health is ignored. This has been a real irritant for me. I personally feel that anyone who is diagnosed with a chronic, incurable illness should immediately be referred to a mental health professional, or at the very least should be given a list of local therapists for their perusal. The patient could then choose when/if to see someone to help with these issues instead of being left to wallow in despair. When my son was diagnosed with autism years ago back in the UK, we had access to family therapy if we wanted, and I think the same should be offered to both patients and families in this terrible situation.
Fundamentally, I think it is both folly and extreme negligence to leave such patients and their families to just fend for themselves.
Interestingly, I am reading Ann Patchett's newest book, State of Wonder, and Lariam plays a rather major role in the psychological makeup of the main character...just a bit of a side note there.
Back on topic, though...I may be wrong, but it seems to me that what both Vicky and The Noob are railing against is the lack of support from friends and family, and this is a complaint that we, sadly, hear about so often here on IHD. Chronic illness is a lonely road in our society, it seems; maybe it has something to do with the "rugged individualism" we seem to value so highly. Maybe we just don't know our neighbors anymore, and our families are tossed all across the continent because that's where jobs or husbands have taken them.
Anyway, Cariad, thank you for your insight as it is particularly valuable to be reminded that we are not all alike. The fact that I insist that I will "do everything I can" is really irrelevant. It means nothing other than right now, I will do everything I can. It doesn't mean that a year from now I will be saying the same thing because I may be too ill to do anything at all. And it certainly does not mean that anyone else is obligated to do "everything they can" just because that's my own personal motto. So, thank you for reminding us that we mustn't be judgmental nor should we project; that's largely unhelpful.
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Oh, Noob, I totally understand the legal obstacles in this. My brother checked himself into a mental institution when he was around 20. If he had not been willing to do that, there would have been nothing my parents could have done for him beyond a possible 5150, and then he would only be held for 72 hours max. The mental health care in this country is shameful. That whole saga (which was only beginning all those years ago) taught me a lot about the fine line between assistance in times of need and outright coddling that in the end only destroys the person on the receiving end. There is no love lost between my brother and me, he was a violent and wildly angry presence in my life, and I wanted and want nothing to do with him. Still, I see the waste of it all, the fact that he really needs someone to insist that he do something for himself (probably take meds, which my mother has convinced herself are just damaging poisons churned out by a corrupt pharmaceutical industry). Do I agree that the pharmaceutical industry can be terribly corrupt? Of course, but with my brother, he quite literally has nothing to lose by trying them, and until someone can explain the often disheartening process of trial and error that is part and parcel of psychotropic drugs, and my mother stops believing every op-ed she reads in the New York Times or from her European doctors, I see him wasting his life away. He does not have a chronic illness beyond depression, but perhaps he wishes he did. I do know that no one would chose to live as he currently does, and has done for a couple years now.
Thanks for taking the time to really hear what I was (clumsily) trying to say, MM. I noticed that I wrote that what someone can and can do is a "judgmental call" rather than what I meant, which was a judgment call. I guess that little Freudian slip says it all. I was feeling defensive, which I believe makes it difficult to concentrate on my point rather than just telling me to calm down and stop taking everything so personally. I appreciate that you looked past that surface. It is hard not to feel guilt and shame when in the throes of a mental illness, and I think some would find it a weird relief to have an illness that everyone can recognise and see. When I reacted to Lariam, I did not feel like I could tell a soul, only Gwyn knew. I even felt like by blaming it on the Lariam, maybe I was just making excuses and that it was not the Lariam, it was just me. Depression was both easier and harder when renal failure really hit me. Easier because people could easily understand and "allow" it - I had good reason to be depressed. Harder because when people think you have good reason to be depressed, in fact perhaps you "should" be depressed, it is not seen as a big emergency. Which probably goes to your point that mental health education/assessment should be offered to anyone with any major illness.
What a coincidence about your book. It is real, though - Lariam is a monster drug. In South Africa I heard tell of visitors up all night, talking to themselves, crying uncontrollably, climbing onto rooftops, self-injuring. The people i stayed with banned it from their premises and have seized it from their guests when necessary.
I heard an NPR piece about the difference between autism care in the UK and the US, and how many American parents cannot believe how far other governments go to really care for ALL citizens. I would love to see a return to neighbours all pitching in to help each other, and I think things are coming round to that, very slowly, because so many people have come to realise how lonely and empty life is without community and human connections. We have the Milwaukee Time Bank here, a fledgling organization that basically lets you earn hours by performing volunteer tasks for others, and then you use those hours to purchase volunteer time from any other member. It is basically a barter system, and 100% free to join and participate in. I hear stories about neighbours coming together to build homes, install green technology, dig people out from a blizzard, whatever. Economic anthropologists argue that community and identity is now based, sadly, on products. We have people who feel so strongly about a company (our local example would be Harley Davidson) that they join clubs based on the weak bond of both owning the same machine. And this a reaction to several things, the dissolution of other choices being a major driving force. We all want to a feel a part of something bigger than ourselves, feel like we really belong somewhere, but this country does not offer that opportunity in many areas.
I honestly wish I knew what to suggest to Vicky. Her husband sounds depressed into paralysis, but it could be that he is just coasting along because he can. In the end, it does not really matter because she is at the end of her tether and it does no one any good to stay in a miserable situation for someone else. Of course caregivers are people and as valuable as anyone else! I don't think anyone was suggesting otherwise. There are surely many examples of lazy, hateful, selfish patients with a ferocious sense of entitlement, and then there are people like me who worry that they will turn into this, who do their best most of the time but have to cut themselves a break now and again or collapse into self-hatred. I have a very understanding spouse, perhaps too understanding in that I can get away with being lazy. He was not always that way, and I was not always where I am now, which is stable and healthy and desperately wanting to do my part.
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hey had a quick minute to jump on here before rest of night chores.
please no one take offense, please.
but i would like the MODS to consider moving this thread to the "spouse/caregiver section".
it was started by a caregiver, about what that caregiver is/has been dealing with, and not from the "patient" themselves on D, so i think its more appropriate there.
seems like a good many of the replies are from D patients, and though they mean well, might be caught up in defending themselves as this is in the D section.
the Caregiver section is just for Caregivers. Lets move this there?
I don't agree this whole thing is about the lack of community support. I personally believe it is about someone, as Cariad said, "coasting because they can". And because of that, the Caregiver is at the end. It might wake up the person on D, and it might not. And even so, it still may be too late.
Either way, I will be sorry to see Vicky lose what support she has, this site. But i will continue to be there for her and will encourage her to build a new life and keep moving ahead. Its going to be a long road no matter what fork in the road she takes.
Vicky: :cuddle; :cuddle; :cuddle; :cuddle;
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Noob, your mentioning the lady in your clinic, reminded me of myself somewhat. When J. was diagnosed in 2004 and reality had hit me, I "flocked" to him to "help". I really did do this to myself! He literally did not have to do a thing! Why should he, he had me to do it all. I wore myself out and I was wrong to do it. This was before his amputation's.
Well, when they amputated his leg (BKA), it infuriated me to no end that where he went to rehab, they did not want me staying over night or to come all day for a visit. Per insistance of his VS, I was like what the heck, he is my husband and I need to be there. Well long story short, I was wrong again! They did not need me there and nor did He! I learned that he could do alot of things, and without my help!
So in this case, it did not take me threatening or ultimatums on my part, it took a Rehab hospital and their staff with my husband, to show me that he could do things on his own. On the way home from Rehab, my husband told me it was the best decision we made! He felt like he was useful again. Now, he helps to do things that he "knows" he can do.
Sometimes, I feel like when an illness like this "comes upon" us without warning, we just want to reach out to help, but inturn hurting ourselves!
lmunchkin :kickstart;
P.S. Oh Cariad, I never have those "Fruedian slip ups", LOL Yea Right!!!!
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Today was a rough one. I tweaked my back at work about an hour after I got there and stayed another six hours before i could leave, bad stuff. Dave had gone for his "walk" and then went fishing. I got home ahead of him and he asks how work was I told him what happened and he was like oh. My sister called and said she was going to take me to the hot springs to soak my back and hopefully help it. Dave was in bed again so I limped in to get my shorts and he says what's wrong with you!!!! I was like OMG are you fricking nutso or something, told him sister was taking me to the springs and he got all disgusted with me and nasty talking to me. He can't get in the springs, and the few times he has gone with he sits there on the bench and complains he's cold or tired or anything else so I get out and go home before I"m ready. This seriously is like taking care of a two-year-old and I've raised my kids already I don't need to raise another one who threatens me with this and that.
Back in January we went to Salt Lake City, six hours away, for him to have his PD tube replaced. I wanted to find the doctors office so I would know where to go to and I thought his appt was within 20 minutes of us getting there, I said ok I'm going to check to make sure of the time, when I came back out and told him we had to go back in then he literally threw a temper tantrum in the car that he was hungry and he had to go get something to eat because his blood sugar was dropping, I've learned this trick pretty well over the last four years, he was throwing himself back and forth in the jeep yelling and me, his eyes glazed over and for the first time I was scared of him. My ex-husband flipped me out of a chair the night I left him and I wasn't as scared as I was that day. We had to go in the office for the appt and he was a cool as a cucumber and when we got done went to get something to eat and he didn't act like that again for a few months.
We were headed down for hemo and the mountain pass we had to go over was iced over so thick I could not see the road under it. I said we have got to go back I had my Jeep in 4X4 and I was sliding on the ice doing 15 mph, I said we can go on Wednesday, again it was the throwing himself around the Jeep like a 2-year-old having a temper tantrum, scared me worse than the Salt Lake City event. Now I refuse to go on the road with him and that ticks him off, but I'm not going to subject myself to that at all, I don't have to.
I need to take care of me for a change.
Friday night was my true breaking point. He made burgers and corn on the cob and I ate about three bites of my burger and couldn't tolerate it, it was good, my stomach just couldn't take it. Later on he asked if it was overcooked, when I told him no it was fine, I just haven't been able to eat for a few weeks, he says oh. I see you getting on the scale are you trying to lose weight. Really hurt me, I've lost 27 pounds in two weeks because I can't eat because of the stress and he has never noticed. It may sound like a stupid reason to get to the breaking point, but if he can't even notice that it shows how much in my life he doesn't notice because he's always in bed.
Right now he's pounding around in the other room, and I'm sure it's because he didn't go to the springs with me. I moved my wedding set over to my right hand sometime last week and he hasn't even noticed that.
I'm not sure at what point I stopped being his wife and became the caregiver. When this all started all he could say was, I don't feel sick, how can I be sick. I think that is a lot of why he was so noncompliant, then it just became routine I guess. I did everything and he laid back and did what he wanted. It's been three weeks since he was started on Renvela three times a day with meals and he has yet to take one!!!!! Makes me furious. I know there is an element of depression with him, that is why he's on teh Wellbutrin, but if he refuses to go to a psychologist I can't force him and I can't take his hand and make him go. The only thing I am doing by staying is digging my own grave a little more each day, so I have to go for my own health and sanity and peace of mind. I know I can't make a grown man change his ways unless he wants to and he doesn't seem to want to. If he can go fishing all day long he can do a lot more for himself, he just won't.
In the past year he has replaced his computer, gotten new glasses, and a new truck. I have needed glasses for over a year and now can't afford them, I am on his old E-machine because my computer bit the dust and it's like a dinoputer. The old truck he traded in blew a cam and it would have cost $1,500 to repair, but instead he decided he needed a new truck and now we have picked up a $375 payment a month when the old one was paid for and only about six years old!!!!!!! He does what he wants not matter the consequences to anyone else.
I have ot do for me for a change I guess, I think I deserve it, maybe I don't, maybe I'm just being selfish in not taking care of all his wants and needs anymore, maybe I'm just an uncaring person, maybe I'm a beotch, but I need to take care of me this time around.
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Vicky, honey, this isn't a polite question - but what was he like before he got sick? Are the tantrums just an extension of that? Because it sounds more like mental and verbal abuse than anything else to me - and no one should have to put up with that, no matter how ill the abuser might be. :cuddle;
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Oh Vicky, you are not a beotch or any other bad thing. It sounds like you have been through hell with this crazy ride. I totally agree, if he can go fishing, he can sure do a lot of other things for himself. And it also sounds like you have become very unimportant in the relationship. To not hear you, see you or listen to you.
My heart goes out to you. :grouphug;
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Vicky, honey, this isn't a polite question - but what was he like before he got sick? Are the tantrums just an extension of that? Because it sounds more like mental and verbal abuse than anything else to me - and no one should have to put up with that, no matter how ill the abuser might be. :cuddle;
Absolutely right, jbeany. As you share more, the picture is coming into clearer focus, Vicky, and I am glad you have a plan in place to leave the marriage. What you are describing is inexcusable - don't let guilt stop you from saving yourself. Back pain is so hideous (just had a long bout with it myself) and needs to be properly attended to. Please take good care of yourself. We are here all hours of the day to offer support as you go through this difficult time. :grouphug;
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Vicky, honey, this isn't a polite question - but what was he like before he got sick? Are the tantrums just an extension of that? Because it sounds more like mental and verbal abuse than anything else to me - and no one should have to put up with that, no matter how ill the abuser might be. :cuddle;
We were only together about a year before he found out he was sick, he never knew, never had an inkling. He went to the doctor for a check up after my brother-in-law had a heart attack and his kidney functions came back bad enough it was straight to the neph from here. Before the disesase took over, it's almost hard to tell because we'd been together such a short time he was loving and caring, held me, called me "pet"names, made me feel important. Since all this started it's like a whole different person who's mad at the world and me all the time. I understand the mad at the world, but I haven't done anything to him, but support him as much as I can, I just got tired of the nastiness. I talked to the doctors at clinic one day and said something has to be done because of the attitude and not wanting to get out of bed and everything else that was going on that is when they started him on the wellbutrin. Counseling is not an option since he won't go, so it leaves me in a pickle I have to get myself out of.
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It's so hard I hate to see a marriage dissolve, but I can't do this anymore. I'm tired of being sad and myself getting depressed. Not sure how to get over the guilt but I have to some way or other. He has no family here so that makes me feel worse. Not sure how he can make it back to Michigan, but he will have to deal with that when the time comes.
My sis, brother-in-law, and mother are moving to Arizona in about a month so I am going to stay behind and take care of their house they are trying to sell until spring time at least and see what life brings me and if i'm ready to go out there. The plan was for all of us, including Dave, to move there this fall, but I know from past experience that a new location does not improve a situation or marriage.
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Just a quick thought a bit off this particular topic, but I am not comfortable with the idea that the " Caregivers" section is only for caregivers. Move this topic if you please, but all sections should be open for all members no matter their position. I personally have been taught a lot by reading posts from carers because I now have a good idea of which behaviors are particularly obnoxious. I figure that I am a caregiver to me, and I have taken a lot of advice given by caregivers on IHD when I needed to explore better ways to take care of ME. I would hate for there to be anything on this forum that might pit patients against caregivers, so I DO understand the concern that dialyzors might be "defensive", but caregivers might be "defensive", too. I would hope that all of us as a community could get past those feelings and accusations and continue to support each other.
I know that the fundamental problem for Vicky is not merely "lack of support", and the same for you, The Noob. The problem is the patient/spouse. There's no good spinning that. It's that simple yet that complicated. I understand that. But both of you have mentioned the lack of help and support from friends and family, and I know that lack does not help. I was simply commenting on that; I wasn't trying to say that if you had all the outside help in the world that having a spouse on D who either refuses to take care of themselves or who is just abusive would be a picnic.
Lastly, I am not sure why anyone would think Vicky may be losing the support she has from this site. I think this site is exactly where she should be. She is being very brave in sharing her deepest, darkest thoughts about a marriage to a man who may have been just as abusive had he not had chronic illness. But he DOES have ESRD, and we have seen how this disease can either cement a marriage or can destroy it, so we have seen it all and do not judge anyone who feels desperate and trapped.
Vicky, I don't know for sure, but you seem to need permission to leave this marriage, permission to feel as you do. All of your feelings are certainly justifiable. As for what you do with those feelings, we will support you no matter what decision you make. This is a decision you need to make for yourself. What you have to decide is which course of action will leave you feeling like you can live with yourself? If you decide to stay, can you live with the resentment that will almost certainly come from sacrificing your life for this man? If you decide to leave, will you be able to live with the guilt you will feel (and I know you will feel some guilt because you have said so, not that I think you deserve to feel guilt)? We can't possibly make those decisions for you, but we can listen to you and encourage you toward making the right decision for YOU.
We wish you all the luck in the world and understand that this is so very difficult for you. Thank you for trusting us with your deepest feelings. :cuddle; And you are very fortunate to have such a solid friend in The Noob. What a great gal to have in your corner!
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(PS @ The Noob, I didn't take offense, and I sure hope I didn't come across as "defensive". :cuddle;)
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I think part of it is how are the people in my community going to judge me for walking away from a chronically ill person. Most in society feel someone has to take care of the chronically ill, as long as it's not them, and shame on anyone who doesn't have the compassion to stay and do that for them so they don't have to.
Dave is 57-years-old and most of his brothers are older than him and I don't feel are capable of helping him, and his mother is in her 80's so that is a definite no there.
Who is supposed to take care of him, besides himself, I can't do it anymore.
For the Noob, you've been my backbone for a long time, my friend, my confidante. Who is doing to make sure Dave doesn't put his underwear on inside out?
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hehehe..well..
when i spoke at a few points in time to the doc/nurses/SW, they all said "this is his illness, this is his choice to make, same with a transplant, transportation, all of it is his deal and he has to make the calls".
so very true. in the end, thats the nuts and bolts of it.
you can't help someone who doesn't want it. in the end, losing it all may shock him into reality and then he can get back on the horse and ride. lets hope so.
i don't have links, but i have read that a caregiver ages 16 years for every 2 years of caregiving. i have also read (scary) that the suicide rate of a caregiver is in the 80%, likewise the divorce rate for this situation.
my sister has an 11 yr old with a serious terminal disease. no help at all and its 24/7 advanced care for 3 years now. she just went through a divorce. she tells me its quite common in the families of this scenario.
i will venture further to say that there are probably many reading this thread who are in the same boat, who don't post, or aren't registered members.
Vicky, you are so correct in saying that, and this is just my opinion, that society places huge burdens of guilt and responsibility on the caregiver, to keep them doing what they do, so the rest don't have to.
i will be here for you. i will not judge you nor condemn you (not saying anyone else is) just that everyone has to decide what their breaking point is. and there ain't no right of anyone else to guilt/judge. (again not saying anyone here is). if someone makes those noises at you, ask them what time they will be there to take over? :cuddle; :cuddle; :cuddle;
ps: kitty doing good..and the winter is quickly approaching. last winter when i was driving DH to clinic, 10 mph, 35 miles one way, in the big truck, we were on a main hi-way, the truck even at 10pmh, suddenly on a curve, spun around 360 degrees. thank the Good Lord no one else was on the road at that precise minute. its a road all the 18 wheelers use. the ice was heavy and the snow pouring down. when we finally got to the clinic, i flopped in the chair scared and exhausted. after a 10 min break i went back out in it to get groceries and coal.
then i waited 4 hours+ to do it again back home. all DH said was where was i stopping on the way home to get him something to eat?
edit: i sure would like to hear what RichardMel has to say..he is one of the model patients, don't you think? i love reading his stuff. :cuddle;
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Counseling is not an option since he won't go, so it leaves me in a pickle I have to get myself out of.
I don't understand how his refusal to go to counseling stops you from going? That could be a helpful way to work through the guilt.
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The way the last few weeks have been going I've been working every day and haven't had time to even think about making an appointment for myself to go. That is no excuse I know, I just need to do it.
It makes us all wish there were a magic wand like in the movies to wave over someone and either cure everything so life is "normal" again or to smack the snot out of them to get them up and moving.
Yesterday when he went fishing he spent over $100 after I had asked him to slow down the spending so I could pay the bills, then this mornin he messages me at work and says i'm going to get the dog food. Well that is a necessity, not the $100 on fishing!!!!! I dont' get it.
I just have to come to terms with the fact that I can't make a noncompliant person become compliant and when I leave I can't go back no matter what because it will just slide right back to the way it is now. He did okay for about five days this time around then slipped right back into the old habits again. Empty promises just don't fly with me anymore. I need more out of my life. I need someone to love me, sometimes take care of me when I need it, hold me, kiss me, tell me they love me. Maybe I'm asking for too much out of life. I'll be 44 this month and I'm tired and worn out. Thank goodness for Lady Clairol or I would really look my age lol.
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hehehe..well..
when i spoke at a few points in time to the doc/nurses/SW, they all said "this is his illness, this is his choice to make, same with a transplant, transportation, all of it is his deal and he has to make the calls".
so very true. in the end, thats the nuts and bolts of it.
Your husband's doctors and social worker may be saying that, but that is most definitely NOT what they are saying on the transplant side, and that is where things can get confusing for everyone. In that realm, it is definitely a mandate of "This is a family illness, call everyone you know, PROVE to us that you will have someone ready willing and able to hand you the drugs and drive you to the appointments for as long as it takes." I agree that there comes a limit for everyone, that you do not have to be (shouldn't be!) someone's personal attendant and that some people need a push, but the situation is both complicated and individual. For me, I saw demands that I bring a caregiver in as a gross invasion of my privacy. I never, never wanted Gwyn there, because I wanted him to see me as his wife and partner, not a patient. Others may think "Sweet! Finally the help/attention I want!" or something totally different.
I also agree with MM that we don't have a section that is only for any particular group of people. I would not want to be part of a site that breaks people up into factions. If we want to understand a situation like this, we need to hear from all sides - patients, support people, medical pros, anyone with an experience or insight to share. I got into this discussion because I saw mention of yet another person being told that they are too fat for transplant, and for me, that is like the Bat Signal. I MUST comment. I have done so much research on this and really see this as fundamental size discrimination, and it is an issue that most people on this site are at odds with me over. I wonder what the reaction would have been had Vicky come on here and said "My husband is so underweight, the hospital won't list him until he gains 20 pounds, but he just lies in bed all day, not eating." I suspect there would have been a markedly different response from most members. But that's really a tangent for another thread.
That caregiver/suicide statistic sounds inaccurate to me. Perhaps I could believe that there is an 80% greater risk of suicide among caregivers than the general population, but even then, I think we are talking about caregivers who inhabit the very dark end of the spectrum where the person receiving care is profoundly incapacitated. All parents are caregivers, so there would have to be a pretty narrow definition for me to believe that the suicide stat is that high. If you do happen upon a link, please do post, I would love to see it. I do believe that divorce rates would be astronomically high. They are already pretty high in America, and stress is stress. Of course it will take its toll on a relationship if both parties are not engaged in the fight.
Vicky, coming to terms with anything is a process and you seem like you are at the start of the road, but will get there, at your own pace. I am glad you see this as a place where you can freely share your thoughts and struggles. :cuddle;
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I don't look at weight loss as a discrimination against a transplant I see it as, if you are willing to lose the weight then it shows that you are capable of taking care of yourself physically so you are capable of handling all the issues involved with a transplant. It's like a person who suffers from chronic obesity, sometimes there are underlying issues as to why they can't lose the weight, back issues, leg issues, thyroid issues, sometimes it's just love for food and total disregard of their bodies. I know I'm big and I know I need to lose weight and I'm working on it, not just sitting sedentary thinking oh well I'll just keep doing what I want until I'm disabled because of the weight and can get SSI, and unfortuantely that is how some people look at it. There are a lot of reasons why people are on SSI and I don't think that chronic depression, chronic obesity because a person doesn't know how to stop opening their mouth everytime their elbow bends, anxiety attacks which I know can be bad been there done that they can be debilitation but not long term enough for SSI, and I'm sure there are those that will disagree with me.
Ultimately it's all up to us, we either live life sad or we make ourselves happy, we live abused or we get out, we live in poverty or we pull ourselves up by the bootstraps and make something of ourselves.
I know what I have to do to make myself happy, I am working on putting that process in motion.
Dave was put on Renvela three times a day with meals almost three weeks ago and he has yet to take a single pill!!!! He has made his choices and I can't make them for him, but I don't have to stay around and watch the self destruction and self pity. He is capable of doing what he needs to do to be healthier and he choses not to. So now I have to chose what is best for me.
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well amen girlfriend.
when i took DH to eval with transplant team, they asked me if i wanted to wait in the lobby. while i was in the room with him for 3 hours and 5 different peeps interviewing, they ignored me, kept their back to me and finally told me basically that they expect him to handle all this on his own without any help from anyone. they gave me nasty looks. i kept quiet except a few times after they all came in and asked the same questions over and over, and he was getting weary, i piped in and repeated some of the answers.
counseling is good i think if you can get it. i have no insurance for myself, and he only has medical, and the cobra is being paid by NKF and the time for that is ending. any dental/eye things come out of pocket.
i am on the last month of meds for my diabetes, my doc gave me several months worth. so in the next few weeks i am going to the free clinic (one night a week) and see what i can get. i'll be in good company as half the county will be there too.
look, under all this, i love my hubby. i want him to get well. and most of all, HE wants to get well. THAT is the key. Vicky is not in that spot, and again i keep saying, you can't help someone who doesn't want to be helped.
you can empathize, understand, analyze, til your blue in the face. it won't make that person budge.
i can attest to this from my 12 step group. all the love and help and support will not do a thing until that person is ready. and it takes what it takes.
i just got to take a quick break from chores. son and i have a load to do today. the wind is howling and its cold.
we're hoping to hear something from tx team this week. and that will be another roller coaster..but mayhaps a good one.
Vicky, surround yourself with those who will understand and support you. you don't need anyones permission to take care of yourself. :cuddle; :cuddle; :cuddle;
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When Dave goes to his monthly appointments he normally goes alone because I won't get in the vehicle for a three hour trip because of the past temper tantrums. There have been times that his nurses have called me and I've been walking through a store or at work and I can rattle off what meds he is on, not always the dose, but I know all the meds. The only thing he can come up with is his diabetes med and high blood pressure med. He should know them all and keep track of them all, it's his responsibility and need to know issue.
If I knew how to help someone who doesn't seem to want to help themselves maybe I could do this longer, but I'm out of options.
It's nice to come here and spew all my concerns, I can't do it at home and I don't want to burden my family more than I have already.
This past April we almost lost my mother from septic shock from a kidney stone blocked in her ureter. My sister and I spent 22 days out of town with her. She knows all the meds, she knows what she is supposed to do to get back to where she was before all of this. She has managed to lose 77 pounds and is feeling better and looking better than she has in a very long time. I know it was a fluke that the stone got stuck and caused so many problems, but she has other health issues, COPD, CHF, type II diabetes, chronic obesity, but at 66-years-old she is taking control of her life not just sitting around waiting to die. She wants to be active. She has gone from barely being able to get around to actually wanting to get up and do something, make a meal, get outside and do things, she's not ready to drive yet, but I'm sure that will come soon. She tires still, and takes a nap and is right back up at it again. I know it's not right to compare. she came far closer to death then I even want to accept. I've seen people be so sick it was day by day, with her it was second by second situation, sitting in the room seeing her hooked at a ventilator, 9 IV's, feeding tubes, being restrained because she was pulling out IV's, seeing her open her eyes and fight the restraints and one eye was aimed at the ceiling and one eye off to the right. We got her through it and she is fighting for her life back, so it's hard to see Dave no where near as bad as she was and just letting life pass him by.
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I think part of it is how are the people in my community going to judge me for walking away from a chronically ill person. Most in society feel someone has to take care of the chronically ill, as long as it's not them, and shame on anyone who doesn't have the compassion to stay and do that for them so they don't have to.
Of course the truth is not that you would be walking away from a chronically ill person, rather, that you would be walking away from a self-destructive, self-abusing person, but you are right in that the people in your community won't see that particular truth. You have to decide whether or not the opinions of those people mean so much to you that that's enough to make you stay. We live in a very judgmental and even punitive society, and we seem to be very quick to tell people what they should be doing, especially if it has nothing to do with ME!
There is no reason why a person on dialysis cannot be affectionate and considerate and tell you that he loves you. There are MILLIONS of people in this country who have terrible illnesses...ALS, cancer, depression, autism...all sorts of awful maladies, but I would bet the north forty that all of them are not therefore rendered completely unable to ever show a modicum of love and affection and gratitude for being supportive.
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I'll be thinking of you Vicky. :grouphug;
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I don't look at weight loss as a discrimination against a transplant I see it as, if you are willing to lose the weight then it shows that you are capable of taking care of yourself physically so you are capable of handling all the issues involved with a transplant. It's like a person who suffers from chronic obesity, sometimes there are underlying issues as to why they can't lose the weight, back issues, leg issues, thyroid issues, sometimes it's just love for food and total disregard of their bodies. I know I'm big and I know I need to lose weight and I'm working on it, not just sitting sedentary thinking oh well I'll just keep doing what I want until I'm disabled because of the weight and can get SSI, and unfortuantely that is how some people look at it. There are a lot of reasons why people are on SSI and I don't think that chronic depression, chronic obesity because a person doesn't know how to stop opening their mouth everytime their elbow bends, anxiety attacks which I know can be bad been there done that they can be debilitation but not long term enough for SSI, and I'm sure there are those that will disagree with me.
How does weight loss show that you are capable of taking care of yourself physically, and therefore somehow show that you can handle everything else associated with transplant?? I was anorexic for around 25 years, that is hardly taking care of oneself physically. How do people who are under 30 BMI prove their capability to handle a transplant? We don't, it is just assumed that we have superior diets. My brother ate nothing but chocolate through his teenage years - it was kind of revolting, but he was always thin and continues to be so, and therefore he would not have to prove a thing should he (heaven forbid) need a transplant. With the lack of scientific evidence, what right does a transplant centre have to force us to perform like trained seals? Some of these transplant doctors could never meet this weight criteria themselves - why are they allowed to be such gigantic (literally) hypocrites? People in the overweight category (25-30 BMI) survive longer on dialysis and also survive longer within the general population, but 18-25 is the so-called 'healthy' category? It makes no sense. What you call chronic obesity I would call genetics. I could not weigh as much as your husband weighs no matter how hard I tried or wanted to, so why would we think that anyone, if they just want it badly enough, can lose large amounts of weight? The studies that have been done on this have shown two things: people, when left to their own devices, eat almost exactly the same number of calories every single day, and that it takes constant, often Herculean effort to vary ones weight beyond 10% of your natural set point. So many dieters regain the weight eventually while wreaking havoc with their natural metabolism that they are now realising that diets are more likely to cause weight gain than loss. It is not uncommon for people to talk about "dieting up" to a weight they have never achieved before, not because they are lazy out-of-control pigs, but because tampering with metabolism is not a wise thing to undertake lightly.
This has little to do with your husband, of course, but I do fundamentally disagree with you that transplant patients should be forced to lose weight, , that this is not weight discrimination, and that that says anything about their future ability to maintain a transplant, (which, to be honest, is really not that hard, especially not after the first year, unless you encounter complications, and even the most compliant patient on earth is at risk for those). Doctors have been programmed to say fat=unhealthy, and that is a lie perpetrated in large part by the 50 BILLION DOLLAR diet industry. I have absolutely no idea why many people are more than happy to look into how big pharma is so evil, big tobacco, big this, big that, but so few people look at the diet industry and say "they have a vested interest in encouraging everyone to obsess about their weight, and they have the backing of the medical establishment - perhaps this warrants further investigation."
I hope if you want counseling you will get it. The way I see it, you've already said this is no kind of life for either of you. By leaving him, he will then be free to make his life into something different. Your guilt won't help him, and it will harm you, so let it go. I know it's easier said than done, though!
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If a person doesn't have enough ambition to lose the weight to get a transplant, for many reasons like obese people do not do as well as more healthy people in surgery, they tend to have more underlying medical problems then the healthier and thinner population, how are they going to have enough ambition to take care of themselves after a transplant?
Should someone who is healthy all their life, maintained an active and healthy weight be denied a transplant because someone who doesn't give a hoot about their life needs one and gets it first?
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If a person doesn't have enough ambition to lose the weight to get a transplant, for many reasons like obese people do not do as well as more healthy people in surgery, they tend to have more underlying medical problems then the healthier and thinner population, how are they going to have enough ambition to take care of themselves after a transplant?
Should someone who is healthy all their life, maintained an active and healthy weight be denied a transplant because someone who doesn't give a hoot about their life needs one and gets it first?
Well, I'll try to make this as brief as possible, but I feel like I am being asked to explain all of FA or Fat Advocacy (which is GREAT - I appreciate the questions) but I am probably not the best person to do that. I shall try.
If a person doesn't have enough ambition to lose the weight to get a transplant, for many reasons like obese people do not do as well as more healthy people in surgery,
Not true. Show me the peer reviewed evidence. I have searched and searched and searched.
they tend to have more underlying medical problems then the healthier and thinner population,
I am not comparing numbers of underlying conditions, as those would be screened for. A thin person with uncontrolled diabetes or a severe heart condition is not getting a transplant any more than a fat person with the same condition would. I am saying that if the ONLY barrier to transplant is an arbitrary range on a chart, that is BAD science, size discrimination, and just plain WRONG.
how are they going to have enough ambition to take care of themselves after a transplant?
I have no idea what you are talking about. Enough ambition? If you can make it through dialysis, transplant is going to seem like a holiday. The ambition may very well come from feeling better and having freedom from dialysis. Or it won't. Some people take horrible care of themselves after transplant and they do not reject, and the reverse happens as well. In the end, transplants do not currently last forever and it is absolute nonsense for doctors to insinuate that transplant outcomes are entirely down to the patient. That might be nice - it would be great to know that if I just did everything the doctors said, I would be fine and live on in good health for ever after, but that is not how it works. When people talk about "Oh, this isn't fair! I take such good care of myself!" well, that would take a heck of a lot of defining for me to be able to enter into that conversation. My mental health is important, and I am convinced if I had continued to listen to these doctors I would be either dead today, or loaded up on immunosuppressants, hating myself for weighing too much on massive doses of prednisone.
Should someone who is healthy all their life, maintained an active and healthy weight be denied a transplant because someone who doesn't give a hoot about their life needs one and gets it first?
You are equating weight with the ability to judge who gives "a hoot" about their lives. Doctors should never, never be judges of who cares enough to get a transplant. I was not healthy all my life - I went into kidney failure, that is grossly unfair to say that you can now tell how much I care about my life just by looking at me. Getting a transplant first is not denying someone else. If we all start thinking that way, we could all collapse into a mess of "I'm not worthy! I stole a transplant from someone else" and I refuse to do that to myself or another recipient. Weight is not a moral issue. If doctors are presented with someone who appears to not "give a hoot" about their lives, the onus should be on them to say "you seem not to care about your life, can we help?" Someone who does not care about their lives would not get a transplant anyhow, nor would they stay on dialysis. The option to quit dialysis is always there for almost every patient, so if they truly do not care they will say so by stopping dialysis.
The shorter answer is yes, a person who is ill and has faced more challenges than someone else on the list, and happens to be fat either as a symptom of something else, genetics, environment, laziness, whatever, should have the same chance at a transplant as anyone else. Full stop.
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Those that don't give a hoot, for me, fall into the category of those who can't seem to stop opening their mouths every time their elbow bends. A person may not feel good enough to be up and really active, but they can control their eating habits.
If a person is going in to have gastric bypass they have to prove they can lose some of the weight on their own before the doctor will touch them, because otherwise it's not worth it, they will eat right through it.
If a person isn't willing to try to make their body healthier before a transplant, does the doctor think they will miracously take care of themselves afterwards?
If I need a lung transplant is the doctor going to give me one if I don't quit smoking?
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There are some centers who require a BMI number range to qualify for transplant.
Dealing with a chronic illness can be very depressing, and some people use food as comfort (I know that feeling.)
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To add to the obesity issue. Go to any orthopedist and be 300 lbs + and see if they will replace your knees or hips without losing some weight first so you dont' destroy the replacement.
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I am not sure what orthopedics has to do with this discussion, but just because a doctor makes a person do something does NOT make it right. It is all about evidence. Since no doctor nor layperson has ever figured out how to make a fat person permanently thin, nor a thin person permanently fat, I would say that they have no right to demand that either. My husband has been to the top orthopedic surgeon in our city - there was no mention of weight.
There are some centers who require a BMI number range to qualify for transplant.
Dealing with a chronic illness can be very depressing, and some people use food as comfort (I know that feeling.)
Thank you, Karol. I also know this is true. When you say some centers, do you know of a hospital that does not consider BMI range?
Vicky, you don't seem to be addressing what I am saying. First of all, ask any Fat Activist and they will tell you that gastric bypass is legalized dismemberment of fat people. I am not talking about some high flown symbolism here, I am talking about a perfectly healthy organ being mutilated, leaving people who have had the procedure fighting for their lives, unable to get adequate nutrition, and often regaining the weight. They just lowered the BMI minimum to qualify for gastric bands, my husband my even be able to qualify (I think his BMI is around 26) This person passed the intensive scrutiny to be my donor, but if he wants to pay tens of thousands for gastric bypass, apparently no one will stand in his way. It is the worst kind of quackery, so I could not care less about the requirements to have it done. I have followed the stories of a number of individuals who have gone through with it, and the troubles some of them face are worse than anything kidney failure has to offer. One watched her best friend die from the procedure.
Smoking comes with a mountain of evidence that by itself it causes all manner of health problems. Not so obesity. If you can provide peer reviewed scientific studies, show me. Medicine is a science, and should not allow for what you believe to be true or wish were true or whatever. We also have a number of smokers on here - are you ready to say that they do not care about their lives? Last I checked, smoking was considered the most difficult addiction to overcome, rivaled perhaps only by meth.
Weight loss diets do not make your body healthier. That is myth. It is well-funded myth, and a myth that people have been trying to support for generations, but the evidence is not there. You are once again saying fat=sick, thin=healthy. Neither of these is an accurate predictor of health. Fat can be a symptom of disease, but so can thin. You can take excellent care of your body and be fat, abuse your body and be thin, and so this conversation sits on a faulty premise. Since we do not agree on these basic premises, I think it's safe to say we will not see eye to eye on this issue.
I find it ironic that you state you are worried that the community will judge you for your actions, then proceed to judge those of us who have faced kidney failure by stating that you know by appearance (or more accurately, a number on a scale) who does and does not deserve a transplant. If you are just frustrated and angry by your husband's behaviour, fine, but don't generalize to the rest of us. Since you have stated that you feel you need to lose weight yourself, and are actively trying, let's hope that you never are in a position where you will be judged by this criteria. Trying does not cut it with transplant, you either succeed or they keep you off the list.
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had another quick minute to stop for a drive-by post..
received a letter from toledo transplant today stating all thats left for DH to be cleared is for them to read the kidney scans..uh yea..we are all waiting..they worded it like its something we've left undone. whats the hold up? all criteria completed, matched healthy living donor cleared/ready/waiting..come on already.
the letter did say when they clear him he will be put on UNOS as well. sometimes i feel like yelling at them "you want yer money or what?!" :rofl;
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i met a lady way back when this all started for us. her husband (they were both in late 20's with 2 children) was dx with ESRF due to genetic condition. they had tons of help, tons, not just with his care but the house, kids, everything. she stepped up and was tested, (he was clean and sober by then out of necessity, not desire), well she was a match for him. they did the surgery. within 6 months of the transplant, he was drinking heavily and doing drugs and all the crazy behavior that goes with it. she was calling cops and trying to have him committed.
she was angry as hell, and terrified too.
this is the thanks he gave his wife for a year of her killing herself for him. to make matters worse, their son was later dx with the same genetic condition and was showing signs of renal failure at the age of 8.
now neither parent could donate. last i heard from her few months ago, the child is holding his own thank God.
but, after a year of her husband blatantly abusing the gift of life she gave him, and her trying to understand, analyze, get help, blah blah woof woof..she left and filed for divorce.
she is very happy these days. going to college, working at a job she loves, the kids are happy.
the butt head X is still doing all he can to destroy the best efforts of everyone who put their lives on hold to save his.
now not saying Vickys case is like this. and yea, the man is depressed, dehumanized and degraded because of what he has to endure and is not who he used to be. and Vicky has been a loving wife. and everyone cares and feels for him.
even so, what this man needs is another man who is going through/gone through all this, to befriend him. to relate as none other can, and maybe kick his butt into action if it can be done.
what is not needed is for Vicky to continue in a nasty situation that isn't helping anyone. i will keep repeating this: this is the Mans Problem. No one can help him until he is ready to help himself.
i am at our other places doing last minute work and son and i moving rest of small things over for the winter.
my DH is now making noises that he will stay where he is. to this is i said COOL. i'll be happy to sit over here and enjoy the peace and quiet, low maint., friendly neighbors, all the comforts of home i've created here.
i am not going to debate this as i have for the last almost 2 years. i'm done. and i know he's bluffing.
either way, after almost 2 years of this, i am now taking care of myself and my son. we went today and signed him up for a cheap gym membership. his math tutor starts next week. we have all his academics and kits ready. this is his Senior Homeschool year. We are both excited and ready to get this ball rolling!
for the first time in a long time, he and i are going places (that aren't medically related) and having some fun and laughing and getting a little more positive about life.
when i took him back after we were done, DH makes pitiful noises about himself. what will he eat? who will pick up his meds? who will clean up after him?
To which i respond: PPLLEEAASSEE..Homie Don't Play That..(he starts laughing at this point as he knows its inevitable).
i figure as it gets colder, or he gets hungry, he'll come driving up. no worries mate.
Vicky, my heartfelt suggestion to you is do as you planned and stay at the familys home for the winter.
it may be that the ole man will get a dose of reality, maybe a burning bush in the front yard as a sign, who can say? if your still analyzing all this, to me that says your not quite ready to quit just yet. at this rate, you'll still be in the immediate area and should it get to you, you can always go check or change your mind.
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well what'd i say? just after i hit the post button, son calls and asks "what time is dinner, me and Pa coming over"..
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I did not say that someone who is over the required BMI for transplant is not deserving of one. I said that if you know you have to get to a certain BMI and you keep putting food in your mouth all the time you won't get one. The transplant team can deem you noncompliant andyou won't get a transplant either, is that discrimination???
There are a lot of programs out there that will help a person lose weight and maintain a "Healthier" weight that will help get them qualified for a transplant and less likely to have diabetes, heart disease, and many other diseases associated with obesity.
It's a persons choice whether they want to comply or not and that is the situation I am in right now. He does not want to comply, he would rather sit and do what he wants and watch life pass him by.
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I did not say that someone who is over the required BMI for transplant is not deserving of one. I said that if you know you have to get to a certain BMI and you keep putting food in your mouth all the time you won't get one. The transplant team can deem you noncompliant andyou won't get a transplant either, is that discrimination???
Absolutely! For all the reasons I've mentioned, and most likely for reasons I have not thought to mention. Failure to comply with medically necessary issues - for example, the smoking you mentioned, is totally different from what I am saying. I am saying that weight should NOT be a contraindication for transplant in the absence of other issues. If your husband or anyone else are controlling lab numbers and don't have any other medical issues, then the BMI is just a number.
There are a lot of programs out there that will help a person lose weight and maintain a "Healthier" weight that will help get them qualified for a transplant and less likely to have diabetes, heart disease, and many other diseases associated with obesity.
Show me one with a long term (5 years or more) success rate over 5%. Just one. Fat has actually been found to be correlated with positive cardiac outcomes, it is theorized that it may be cardiac protective. As I've said, overweight people outlive those of us in the normal range, and they blow the underweight range straight out of the water. It's called the Obesity Paradox, because when scientists convince themselves that fat is in and of itself a health hazard, then yeah, that would be a paradox. It's no kind of paradox when you begin to challenge the notion that fat is actually the culprit in every health crisis.
It's a persons choice whether they want to comply or not and that is the situation I am in right now. He does not want to comply, he would rather sit and do what he wants and watch life pass him by.
Well if someone with your choice of treatment in their hands makes unreasonable rules, then it may be his choice (sort of, it's not that easy to lose weight, nor is it healthy to fiddle with metabolism), but sick people should not be forced to give up their right to challenge bad science. I tell my doctors what I will and won't do, they do not tell me (with one exception, and only because I trust him to the ends of the earth). I stand up for myself in the face of what I know is wrong - I don't always win and I've had to pick my battles like everyone else. I can tell you that after my last renal biopsy where I warned everyone that I did not react well to those and did not want one, they will completely understand when I say no to the next one. I may not have lost two months of my life and hundreds of dollars had I advocated for myself more aggressively. Patients REALLY REALLY do know their bodies best.
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There is an issue with the lab work, because he won't take his meds right his lab work comes back whacked every month! The Renvela he was prescribed 2-3 weeks ago three times a day is still sitting on his desk unopened. He was having to take iron shots for a while every two weeks and likely will have to go back on them again because he won't take his iron pills when he's supposed to. I can't hold his hand, I can't make him take the meds, I can't make him get out of bed, I can't run his life for him, he has to do that himself and he refuses too so I have two choices, sit here and watch him die because he doesn't seem to give a crap about himself or having a longer life with me or leave. I've banged my head against the wall for two years now, I've talked to the walls because at least they listen. So obesity because he is noncompliant, iron drips because he is noncompliant. So if he doesn't want to do what he knows he has to do to get a transplant there is nothing more I can do but cut the ties before I'm the one my family is having a funeral for.
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Vicky, no one is saying that you have to stay in a marriage where you are not happy, it would not matter if he were the most compliant patient in the world, that is a decision between you and Dave. My husband doesn't always look out for his own best interests either, so if it were a matter of life and death I would be scared and horrified. But it is the kidney failure that is killing him, the kidney failure that has him too depressed to care anymore and it sounds like he is turning to food, but without knowing either of you, I don't really know what is going on.
Not taking Renvela if his labs are out of whack most certainly IS noncompliance. Does he understand that if his phos goes too high his bones will deteriorate rapidly and he could end up in a wheelchair? (Read Epoman's story if you haven't already.) I did not take iron pills regularly either, although I probably should have. I was lectured by a receptionist over them: this is what you have to do if you want to be on the list. I told her I was already on the list and that I had a right to refuse any treatment or any part of any treatment that I chose and would take it up with the doctor if he wanted to discuss it. The obesity shouldn't be classified as non-compliance, as I've said, but that is the thing about transplant - they feel they can get you to do anything they want. People are told they need to get all manner of unnecessary tests, and most do it without argument because it is the path of least resistance. There are transplant patients who have refused to get tests and found centres that will list them anyway, and one patient I knew who refused to get her gall bladder out and switched hospitals to have her transplant with gall bladder in tact.
I have heard from a doctor why surgeons prefer not to operate on fat patients - the fat makes it more difficult for them to see, and this particular doctor recalled in medical school how the resident's job is to hold open the abdomen with a set of paddles, and it was just so back breaking for him. :'( Poor guy! :sarcasm; A patient had the nerve to make his job a bit harder by not conforming to society's standards. Now with laproscopy, it is easier to operate on people of all sizes IF they know what they're doing.
As others have said, your husband may not even want a transplant, and that is a perfectly legitimate choice and one that a few members of this site have made for themselves.
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Even when Dave is feeling "his best" he still won't take his meds correctly. he will sit in the clinic and lie right to their faces and I've corrected it and boy does that start a fight.
If his meds were all in a cabinet in the bathroom I could understand forgetting to take them sometimes, but I put the ones he needs to take more than once a day right on his desk in front of his monitor, so there is no excuse other than he doesn't want to be bothered. I can't open the bottles and make him take them when I have to work outside the home. I can say at suppertime, did you take your Renvela and he'll say I will right now and never reachs for the bottles, it's frustrating as hell!
As far as depression goes, I know the Wellbutrin helps him a lot, he has the ability to get out and go fishing and riding around and spending money. We all have days where we are depressed and feeling blue and don't want to do much of anything, but we don't make it an everyday event and we pull ourselves up by the boot straps and keep going. It's more feeling sorry for himself. I hear how he answers people when they ask how he is feeling and it's always the same, oh not so good but I'll live, then sits up to see how people will react to him.
So it's very hard to stay somewhere where I feel the other person in the relationship doesn't care about themselves or me enough to want to get better to live.
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I'm feeling rather low tonight. I've been staying with my mother this week to help take care of her since staying alone is not a good thing for her yet while my sister and brother-in-law have been on a much needed vacation. As the end of the week comes closer I know it's time to leave for good. Dave has barely spoke to me all week and when he has it's been mean and hateful. I know leaving is inevitable and that is hard. I finally realized tonight why I feel so hurt in all this. Last summer when I spent 24/7 with him in the hospital for five days every time a nurse came in the room to do anything he was all over them with thank yous, not once in the last four years has he said thank you to me. I'm not hurt because I love him, because that has been gone for a very long time, I'm hurt because he hasn't even appreciate what I have done for him. Maybe that sounds childish, but I have given up a lot for him and he doesn't even appreciate it.
So when sister gets home, I'll start packing and leave while I still have a thread of sanity left.
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I am so, so sorry that this has happened to you. It must be just soul-destroying to have done so much for someone only to be disregarded and unthanked. I hope you will finally be able to find some peace and joy, and I also hope that you won't leave our community altogether. Your experience will be invaluable to the next caregiver who comes along and finds herself in the same situation from which you've dislodged yourself. You may be able to give a lot of support to a lot of people, so please don't leave us!
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Vicky, I haven't chimed in because I don't feel I have very much to add to the conversation. But I do want you to know that I am so glad you are extricating yourself from an impossible situation - that's something I do have experience with. I am wishing you all the strength you need and all the peace you deserve.
Don't look back! :cuddle;
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I was lucky enough to have a transplant in July. 4 years ago when I was being evaluated, I was told I needed lose about 50 lbs.
My wife was kind enough to learn how to do NxStage for me. Sure, I had days where I was a whiny, argumentative dialysis patient - but I often held myself in check because I knew how much she sacraficed to keep me alive and that I was doing all of this for both of us.
I knew that losing the weight would be good for my health, and that it would make the surgery not only easier, but leave less risk of complications.
I'm doing awesome now. My creatinine has gotten as low as 0.6. It's stable now at around 0.9. I ran at about a 12-17 creatinine on dialysis.
My doctor said lose the weight. I wanted a transplant. You know what I did? I effin' lost the weight.
Sitting around and pontificating why you shouldn't loose the weight doesn't get you off dialysis. Some hills you just don't want to die on. I certainly didn't. I wanted the transplant for me AND for my wife - she gave her all to be my caregiver, I would be damned if I didn't give my all to make it so she didn't have to.
~Steve
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well said my man. you go! :cuddle;
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Thank you Steve!!!!! You made me feel like i haven't been imagining this and it's not all me. It takes two to tango and I sure don't know how to do it alone. You validated every feeling I have been going through and in a strange way helped me to just lift some of the guilt I've been feeling.
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:grouphug;
I'm glad you found an answer for yourself. It sounds like leaving is really the best thing you can do. I hope you're able to find happiness soon. :Kit n Stik; to your STBX (soon-to-be-X) for being a total :sir ken; to you for the past several years.
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Going down the tube with someone isn't love...I wish you peace with your decision and I hope your husband can come to grips with what he needs to do for himself. Guilt helps no one here as I see it. :grouphug;
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Well I went and talked to Dave on Thursday, he tried everything to get me to stay from more empty promises to threats to sell my Jeep. All I asked him for was my Jeep and the cell phones since he barely uses his. He wanted me to stay at the house for a few months and he would do this for me and that for me and I can't do it. So I got, you can do it but you don't want to. Yup I don't want to and can't do it. So I'll start packing tomorrow after work and I'll go from here. Sister put in a bid for a house in Arizona so if they get it I'll stay here for the winter in their house, if not I'll find an apartment in town I can afford. Fun times.
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:cuddle; :cuddle; :cuddle; :cuddle;
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Vicky, after the initial stress wears off, you will be beter off for your own health. I hope you finally get some rest from the hectic lifestyle that was going on. Enjoy the Arizona sceneray if you go out there.
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email girlfriend
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Well I went and talked to Dave on Thursday, he tried everything to get me to stay from more empty promises to threats to sell my Jeep. All I asked him for was my Jeep and the cell phones since he barely uses his. He wanted me to stay at the house for a few months and he would do this for me and that for me and I can't do it. So I got, you can do it but you don't want to. Yup I don't want to and can't do it. So I'll start packing tomorrow after work and I'll go from here. Sister put in a bid for a house in Arizona so if they get it I'll stay here for the winter in their house, if not I'll find an apartment in town I can afford. Fun times.
It sounds like you're taking care of yourself and that's a good thing. It's hard for a patient to be cheerful and grateful all the time when chronically ill, but how long can loved ones cope with the negativity? Good luck to you.
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Today he asked me for $1,000 and he would pay three months of my jeep payment, I was like that is more than three payments so he upped it. Like I have $1,000 to give him when he gets $4,000 a month between SSD and his retirement. he says he will turn the phones over to me, so i'll try to get that done tomorrow. I moved my cats today and they are pretty mad at me. One is hiding under the bed and scares me, last time I moved them I almost lost one of them, he got so sick. So hopefully they'll be okay.
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Well if you have all the info on the car payments, have the bills switched over to your new address and bank account if auto deduction is used to save your Jeep.
Seems he wants to extort you now andto hurt you more than try to do anything to help himself.
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they are in his na0me tho that is the problem i'm facing right now. I have one of the cats sitting on the desk with me trying his best to help me type, the other one slept in my arms all night. now i'm off to work and hopefully get some more packing done tonight
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Aw Vicky...what a tough spot. I would give him the exact amount of the Jeep payment each month before it is due (by check with proper notations on it or even made out to the Lender) and remind him that the courts can decide the issue if the two of you can't resolve it. It doesn't really matter whose name is on the title as long as it was purchased while you were married.
Hang in there GF, this part is the hardest. Do something nice for yourself every day. :grouphug;
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I'd be very suspicious about handing him money for your jeep payment. Do you have a way to confirm he's actually making the payments? My friends laugh at my lack of trust for people, but I'd be worried that he'll pocket the cash and you'll end up having the jeep repossessed. Is there a way to refinance it so it's in your name?
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DON'T give him any money. He can't even take his own medications, what makes you think he's going to make the car payment? Make sure you pack the payment book and do it yourself.
Do you have your own bank account or is it a joint account? Speaking from hard experience, withdraw money from the bank for your living expenses in the immediate future, just in case he decides to be vindictive and withdraw everything out from under you.
I hate to sound paranoid, but he sounds quite manipulative to start with and there's really no telling what a person will do in this situation, even if you think you know them. I know you want to try to be nice and accommodating to him to cushion the blow, but right now you need to be thinking about protecting yourself.
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I already set up a new bank account because they would not let me just take his name off it even tho it was my account to start with, which in a way is good since I don't have to mess with stopping autopays I had set up. I did all the bills so he doesn't even know where to pay what. I had to show him what pills he's supposed to take and when.
Now he's saying he might have to stay here for a few months if he can't get a loan from the bank to move with. You don't need a driving u-haul to move with what he plans on taking with him!!!!!
I did my jeep payment on line, i just have to have something in writing that shows it is mine after it's paid off and I can log on and do the payments.
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I'd be very suspicious about handing him money for your jeep payment. Do you have a way to confirm he's actually making the payments? My friends laugh at my lack of trust for people, but I'd be worried that he'll pocket the cash and you'll end up having the jeep repossessed. Is there a way to refinance it so it's in your name?
My thought to Deanne, pocketing the money. especially when it doesn't seem he likes to do much.
Just throwing it out there, but not saying to do it, Forgery of some sort. "CBS Cares!" (Late Night With Craig Ferguson.
Whether it be taking control of the payments in his name via online payments, making an address change so you get a payment book sent to your address and future notices, having automatic deductions from your bank account to the payment center.
Where there is a will, there wil be a way to keep your Jeep!
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Oh, and once you get the title of your Jeep, his signature can be done by anyone other than yours so you can have the title in your name and your name alone. That's how it happens in Illinois the last couple times I had to do it and one auto deal did not even care, they just needed a signature from one person on the title. Of course this will cost money to do, but worth doing.
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First step done, got the phones in my name so now i still have connection to the world. now to work on how to get the Jeep over in my name!!!!! Got some stuff packed and moved already and still got a lot more to do. Finally got a day off so I can really work on getting stuff together today, hopefully!!!!
He found an apartment about three hours away. He kept saying he hated this town from the day he moved here, but yet is telling everyone on face book he's loved his time here, he's just a city boy over a country boy LOL. I did tell him i would help him pack his stuff on this end, since I know he's not able to do it alone so after I get my stuff out of there, then I get to turn around and help him BLAH, gonna be a long week or so!
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It sounds like you're doing great! Your messages sound happy and positive now, like you've got a purpose and hope for your future again. :cheer:
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I'm so ready to get finished moving and then help him move so I can be me again!!!! It's been so long since I've been able to do what I want to do and not worry about who i'm pissing off it's amazing
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all the best to come sister! :cuddle;
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Actually turned out to be a fantastic day!!!! Had our Eagles meeting tonight and a very great friend of mine brought me flowers for my birthday today, made me feel good. I spent most of the day at the house packing and Dave was there the whole day and never even bothered to say happy birthday to me