Serious illness causing marriage difficulties...advice?

shiverJuly 28, 2009

My hubby and I have been married for 6 years, together for 10. We lost two children to miscarriage and now pregnancy is not an option due to the potent mix of medications I'm on, so children are not now nor will ever be involved. We love each other and do not want a divorce, but both face overwhelming challenges that are tearing us down...

A year and a half ago, at age 34, I was diagnosed with a serious, incurable and crippling disease, and became unable to work...this disease won't kill me, it will just leave me unable to move any part of body. I loved to work and never had any issues with putting in describe me as a bit of a work-aholic would be accurate. My hubby on the other hand is a very creative, type B personality and does not enjoy the 9-5 grind. He is currently too stressed by his job in the tech industry and is asking for a "demotion" back to his previous entry level position...he tells me he has no interest in working more than an entry level job for the rest of his life. I knew he wasn't good at putting his nose to the grindstone when I married him, but this wasn't a problem when I was able to work. He prefers to spend his time in creative pursuits such as playing music. Other than his lack of motivation to work at higher paying, more stressful jobs, he is a very good man (kind, loyal, honest, sensitive regarding my physical difficulties).

Financially we're going under. Five years ago we bought a house that requires two incomes, and now we only have one, and it's a lower income at that. My medical bills are about $1000 out-of-pocket per month WITH insurance. With him making so little money, we will soon run out of savings and will not be able to afford treatment for my disease, which means I'll likely need nursing home care for the rest of my life (that could be 50+ years, and we can't afford that either). If his boss becomes angry that my husband has asked for a demotion and fires him, I will be without medical insurance and will never again be able to get any due to my pre-existing condition.

I am totally at a loss as how to deal with this situation. Part of me wants to scream at hubby to get off his arse and be responsible and WORK, as my financial need is so dire. The other part of me knows that working hard and consistently is something my man was never good at, and to expect this out of him now is unrealistic and unfair. I do not want him to "martyr" himself for me by working a job he hates, however, facing life in a nursing home for 50+ years has my knees shaking with fear. There appears to be no way to resolve our problem...either he has to put in hard and long hours, which he says makes him contemplate suicide, or I lose my functioning body.

Lately I've been unable to support him emotionally at all...I don't yell at him, but I am angry and frustrated and no doubt this comes though. I feel resentment building...and I feel guilty and helpless in that I am unable to work myself, which would resolve this situation. Any words of advice? How do other people survive situations like this and continue to have a loving and supportive marriage...or is that just an unrealistic fantasy? All advice welcome and appreciated.

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I am so sorry for your illness and hope you will find good affordable treatment.

Are you on disability? i wonder if disability status would provide you with some benefits? like whatever disabled people get? Like insurance or some monetary support, there has to be something. do you have any other family that can help?

although i do not think that your husband has to work 80 hours a week, asking for demotion right now is a bad idea. When he married you, he made a commitment to be there for you. it includes in sickness and health, so he can't just do what is good for him, he has to consider both of your needs. if people cannot make such commitment, they shouldn't get married. he said "I do" so he has to work more and make sure you have insurance and bills are paid. is not your fault you became ill.

if he has any family, i wonder if they can talk some sense into him. good luck and hugs to you. do they know about your situation?

    Bookmark   July 28, 2009 at 12:57PM
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Thank you finedreams. I have applied for SSDI, but my claim is still being processed and it could take 1-3 years before I will know if I'm approved. Also, they make you wait 2 years until they give you any kind of state insurance, which wouldn't cover my medications anyway (I have an autoimmune disease, and the meds used to treat it are some of the most expensive meds on the market).

His family is unwilling to help us in any manner, as they believe once you are 18 you're on your own. My family has helped us financially as much as they could, but they can afford it no longer.

I have asked my husband to wait on asking for the demotion for one year as I feel our situation is too unstable, but he feels he just CANNOT go on in this job for even another week. Neither him or I can sleep due to all this stress. We must find a way to support each other through this, but I am fresh out of skills and knowledge of how to do that. :(

    Bookmark   July 28, 2009 at 1:12PM
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Get with county and/or state agencies immediately. May take considerable effort to get to the right place. You likely will have to "spend down" to the point at which you will qualify. However, the situation you described is quite hopeless financially. Husband/friends/family may not be saying anything but what they're thinking at some level is "What's the point? No matter how much we put in it all gets eaten up and there's no hope for change. No end in sight. No sense in exhausting ourselves and ruining our own situation over it. Might as well let the government handle it." Not saying they're bad people. Just stating a version of what would be obvious thoughts for anyone who understands anything about money.

Certainly you will need government assistance sooner or later. No individual and very few couples could handle what you've described on their own nickel. Might as well get your ducks in a row early.

Your husband sounds like a considerable slug to me but, in fairness, I very much doubt his earning level -- at whatever level he's capable of at the present job -- would offer any real solution to your problem. Probably wouldn't even postpone the inevitable. If you want to keep him around, might want to tread lightly there.

    Bookmark   July 28, 2009 at 2:35PM
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Asolo, what you have said is accurate and correct on all counts. Our situation is indeed financially hopeless (and fairly hopeless on other levels as well) no matter how you cut the cake. Him working his butt off or not, government help or not (most people with my disease max out thier lifetime medicaid benefit in 5-7 years), the outcome is not going to be good.

I think what I'm agonizing about the loss of respect I'm beginning to develop for my husband...he's throwing in the financial towel less than 2 years after my diagnosis. I would have helped HIM as long as I could have, but then I have a personality that loved to work. I know the burden on him is great, and there are many, many healthy spouses of sick people who can not hold up under this kind stress.

I guess I'll just have to suck it up...whether or not we can find a way to respect each other and stay together, I suppose time will tell. At some point when I'm in a nursing home it really won't matter anyway. I have to say I feel better and more flexible about life when I look at it under this lens. Thank you.

    Bookmark   July 28, 2009 at 3:15PM
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Ok, I guess your husband could just be a lazy schmuck, but on the other hand maybe he's one of those rare men that just really get it. Get that it's not about money and the job, it is about family.

I help run support groups in the area for a chronic illness and I find that often the spouses and care givers of those with illnesses are suffering as much as some patients. They too face added stress, responsibility, loss of life as they know it, etc.

I don't know what is going on with your husband, but I do know some hard working "A" types who strive for money and perfection may see you as a liability for them and may not care to stick around with you.

Your husband has stayed and may really "get" that he's not going to be able to keep up with the Joneses no matter how hard he tries. And, he may have come to understand that it doesn't really matter. He's probably stressed out over your illness and I would bet he has picked up some of the household chores you were doing and helps you a lot now, right?

He may actually think having more stress free time to play a little music, watch Magnum PI reruns with you, and hold you in the middle of the night when you're sick is more important than a few more dollars in his paycheck... Maybe he's right....

I think you'll gain a new perspective on life after living with your illness a while longer. Hopefully your disability application will go through and maybe even the new heath care plan will work for you.. Good luck to both of you.

    Bookmark   July 28, 2009 at 5:30PM
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Carla35: when the bank takes our house, we have no money for food or clothes, and I can't even get basic medical care, him holding me at night may not be as comforting as you think. But thanks for your point of view.

    Bookmark   July 28, 2009 at 6:10PM
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I think carla's post is somewhat condensending. we aren't talking here about him providing luxurious vacations or fancy restaurants. we are talking about sick person not being able to afford basic health care and basic medication as well as roof under their head and basic food. I doubt his hugs at night will replace her much needed medication.

the fact that he stayed with his wife in sickness doesn't make him a hero, that's what people are supposed to do. the fact that someone else dumped their sick wives and he didn't doesn't mean he should be elevated to some heroic status and should make unilateral decisions about demotion so he can hug her at night, watch reruns and play his music. it all sounds much more fun than working hard. but it won't pay for her medication and their food and their house.

i do not understand why people are saying that it makes no difference if he works more or has a better job or works two jobs or he does none of that. it makes a very big difference. if he asks for demotion, he will end the first one to be fired in lay offs. then he will have the whole day and the whole night to hug and play music hungry. ridiculous.

    Bookmark   July 28, 2009 at 7:07PM
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Wow, that is quite a distressing situation. I can understand your feeling resentment towards your DH. A demotion is the last thig he should do now. I'm sorry but I think it's selfish of him to lay it on you how stressed he is over his job & feeling suicidal about staying in it.

Come on, how does he think you feel about facing this illness AND worrying about whether or not you will have a place to live. I'm no sure what to say about him, but think you need to just focus on you & if he cant step up then perhaps you can go live with your family while seeking treatment so you can focus on living healthfully with as little stress as possible since stress & chaos are very very bad for auto immune disorders.

Something to keep in mind there are lots & lots of clinical trials that are most likely using the meds you will be taking as part of a study, it does take a lot of research to find the one that suits your needs/disease process but I have found a few for my patients that didn't qualify for treatment under the screening proram I work for, I agree with Asolo now is the time to get things lined up, apply for state aid in addition to SSDI, I'll try to find the link to the clinical trials I use-Found it! there are literally thousands, but you can enter either the drug/ disease process & then narrow it down geographically. I was able to get cancer treatment, for 2 of my patients recently that did not qualify for treatment because they were not yet US citizens, one was a refugee.

Don't let the phrase 'clnical trial' frighten you, most tims it is tried and true fda approved meds/surgical procedures but they are tracking age/numbers/results etc. Hope this is some help to you.

Best to you, I will keep you in my thoughts & prayers.

Here is a link that might be useful: Clinical Trials

    Bookmark   July 28, 2009 at 11:28PM
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Bottom line, his making a few more dollars an hour is not going to matter.

You guys can think what you want of me, but I am not being condescending and I really do understand a lot of what you are going through. I work with Lupus patients and their families and a lot of them go through what you are going through. I know the drill, I understand the feelings. One of my friends just died (she was 31)... her mother quit work to take care of her. Lots of my friends are on disability. I can't tell you how many have to apply more than once, and how many learn to live comfortably on disability and medicare when it finally comes in. It takes a while to adjust.

Fact is you're living in a two income house, and have medical bills that "aren't" basic and will probably only get worse.. You can't afford it. To expect your husband to make enough money to cover a two income house, your medical bills, and take care of you (considering you can't move well - that's kind of a full time job in itself) is asking too much.

You will probably get governmental aid. Realistically your husband probably does needs to lower his work load so he can help take care of you. The health of caregivers goes down drastically when there is an illness in the family too. Keep that in mind. No one can do it all. And, without gov. aid you will still be in debt either way anyway.

It is very common for a primary caregiver to cut back hours and/or job responsibilities when an illness presents itself in a family (The Medical Leave Act even helps provide for it). He's not a hero... but I'm guessing he's not a big creep either. I've seen the opposite where the spouse puts themselves into their work and neglects the sick spouse.. and I see that more often with bad results. The relationships that work are those that know they need the government to help carry their family probably for life; they learn to live basically, and set different priorities. If your spouse truly doesn't mind a lower standing of living becasue of your illness, you're lucky. I'm not trying to be condescending, it's true and it is respectable.

I am curious as to your illness. Is it MS or Parkinson's or something else? I do recommend you and your husband (they often have groups for caregivers too) seek out a support group for your disease if you haven't already. It's nice to be with people that can really understand what you are going through...

I also wouldn't rule out that either one or both of you may be clinically depressed. Depression is very high not only among chronically ill patients themselves but also among spouses /caregivers... just something to keep in mind.

Below is a AARP article that may provide some insight.

And, hey, I do know where you are coming from. Things will work out -- it just takes some time to adjust -- 2 years is not all that long with a chronic illness. Things do get easier and money, or the lack of it, isn't everything. You're not going to starve... Stay positive...

Here is a link that might be useful: Caring for the Caregiver

    Bookmark   July 28, 2009 at 11:47PM
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I suppose everyone is different but i totally agree with carla

    Bookmark   July 29, 2009 at 4:10AM
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Perhaps it is time to think about selling your house ?

Could you buy a cheaper house to ease the financial burden a bit ?

    Bookmark   July 29, 2009 at 4:48AM
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We WILL starve if he gets fired in this economic downturn. Our house won't sell for enough to cover our mortgage in this market. That he would take this risk and ask for a demotion RIGHT NOW is insane...I understand he needs to lower his job stress, but going from the top of his field down to an entry level position that pays only miminum wage will not be helpful to either of us at this point. Despite the conflicting feelings here by different posters, things are becoming clearer in my own mind. I do appreciate everyone's opinions and has helped me see the situation from different angles. I married a laid back man for his good heart and personality, but when push comes to shove, a he cannot support me in the way I need during this crisis. Thank you...

    Bookmark   July 29, 2009 at 10:11AM
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it would be even be easier to move around in a small
apartment than in a house, plus no maintenance, no worry about your lawn etc. apartment type of a town house that has little access to a patio where one can sit in a sun, but still if something breaks managament fixes it.
2-bedroom (or even 1-bedroom with storage) apartment is more than enough for 2 people with no kids. i would certianly sell the house.

But i still do not believe it is a good idea to ask for demotion. OP never said that he neds to quit his job as to take care of her, she said he overall never liked to work much and wants to play his music. i understand creative pursuits. i am an artist and paint all the time yet i have to have full time job. My art doesn't feed me well enough.

we aren't talking about him quitting job to look after her, that would be a different story. If time comes maybe he will have to do that, but now doesn't sound like good time to get easier less paid job.

carla i suspect that woman who quit her job to take care of her daughter had some other income or savings to buy her food. people do not just quit jobs if there is absolutelly no income coming from nowhere. OP has no income and no assistance at this point.

    Bookmark   July 29, 2009 at 10:12AM
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Have you and your husband contacted or are participating in any kind of support group (whether online or in person) for your disease? The people in these groups who have "been there, done that" can be very very knowledgable and helpful dealing with both practical and emotional aspects. If you find the right group, they will be much better equiped to give advice both on how to navigate the relationship difficulties and likely to have knowledge on how and where to look for financial help for medication, clinical trials, new treatments in the pipeline, etc than anything you will find anywhere else.

    Bookmark   July 29, 2009 at 11:45AM
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I wonder if you two could compromise? Such as...he agrees to stay in his current job until 1)you get approved for Social Security, and 2) the market gets a little better and you can sell your house for something more reasonable. Then, when those things happen, he can go get a job that he actually enjoys and take the pay cut.

I see both sides of this situation. I can completely understand why you are frustrated and resenting him, but I could also see how he could be resenting you. He's not getting the life he bargained for either. His young wife will be completely paralyzed by an unforseen illness, and he hates his job enough to talk about suicide, so it's obviously making him miserable. It would be much easier to bail on the whole situation than to stick it out, but he obviously loves you. Type A people tend to see anybody who does not operate the same way as lazy, but they just have different prioritites in life. I would rather enjoy life and more free time and sacrifice things that money and being a part of the "rat race" provides. BUT, having said that, it would be irresponsible for him to change positions now, in your current situation...until you get some gov't assistance with income and medical coverage.

It seems like you should be able to work out a plan together, you agree that he can choose a job he enjoys more later (without giving him flack about it), and he agrees to stick with the high paying one until you two can get rid of the house you can't afford, and will have more income. You will obviously never live the lifestyle you once did, but that doesn't mean you can't have a happy or comfortable life that is more affordable.

    Bookmark   July 29, 2009 at 12:53PM
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Believe it or not, I received my letter from SSDI today denying me disability benefits. My husband has his mind set that he won't continue to work his job, regardless of this information or anything else. As far as I'm concerned he's bailed on me right when I needed him the most, and I think he's been planning to do it since I was first diagnosed...I will contemplate what I need to do next. Thanks for your support and alternative views on the situation.

    Bookmark   July 29, 2009 at 12:55PM
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In addition to a support group, you also should find out all of your options and all of the resources that might be available to you. Not every government agency makes people wait 2-3 years for assistance. In each of your posts, your tone and resolve are so final, even hopeless. But you do not know the doors that you can find open as long as you think there is no use in looking. And someone mentioned depression, which very much sounds like your state of mind right now. I would be too. Most people would, but I really think you are stressing about the wrong thing and expecting way too much from your husband. He simply is not capable of being more than he is, but he still is everything you loved about him and married him for. You needing more now is the only difference. The worst part I see are the brick walls. You have not run into these walls. You are the one who keeps constructing them. I'm sorry that I don't know the directions to point you, but I'm certain you will find someone who can among those in support groups. Please begin networking. About the house, you can't afford it anymore. It would be wise to move now so that it stops draining you financially and emotionally. Let a real estate agent handle the rest to guide you on what can be done. You don't have all the answers. You do have to find them though.

    Bookmark   July 29, 2009 at 1:06PM
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The networking idea is a good one whether or not the husband stays.

His earning power will not save you no matter what he does but the insurance is important to keep if it can be managed. If he's supportive otherwise, that may be all that's reasonable to expect from him. If he wants out, that's probably not something you can control.

I think you're entitled to the frustration but keep your brain working. There are practical matters that it appears you can still handle even if DH cannot.

    Bookmark   July 29, 2009 at 1:12PM
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Wow, you guys are forgiving people. I guess I feel that provding my ill spouse with medical insurance, a job that will at least keep food on the table and clothes on their back is not too much to ask. Our home will go into foreclousure and I accept is true we cannot afford it. If hubby had stayed employed we could have held off until the market was a bit better and then sold it, but either way the house was going on the chopping block. I never, ever, EVER expected him to keep us in this house on his own.

I have been in a good support group since I was diagnosed, which has indeed been helpful.

The issue is now, how do we support two people off a $7 hour job. I'm not asking for a fancy vacation and fancy cars...I'm asking for an efficiency apt or a trailer...basically anything to keep a roof over our heads. Hubby is "not going to worry" about that. I will continue to try and find some type of government (or any other) assistance, but in the meantime I'm going to be homeless, and now without medication my disease process will SEVERELY ACCELERATE. I find it difficult to believe I'm over-reacting with being upset about this, but to each thier own.

    Bookmark   July 29, 2009 at 1:36PM
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I don't see over-reaction. I think it would be strange if you weren't upset. You're in a very tough situation -- one that almost nobody could handle on their own.

Do whatever you have to avoid the acceleration of your disease. Find a source for the meds you need and a way to get them. Church help? Charities? Private donors via local media help? I don't know. Do what you can while you're still able.

DH's statement about "not going to worry" I find incredibly obnoxious. What a slug! If this is what a "helpmate" is, marriage as I've known it is in a sorry state. What does he do that is helpful other than at least keeping a job with some benefits?

    Bookmark   July 29, 2009 at 1:59PM
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I'm sorry to say this, but your husband sounds incredibly selfish. Here you are, incredibly sick, unable to do the things that you love, with a prognosis that is likely only to get worse -- and all he's concerned about is having a job that makes him happy. He needs to man up, and do what is necessary to provide for his family, no matter how little he wants to do it. That's what being a spouse means -- I hate my job, and I'd love to sit on my ass at home or take some happy-dippy job which pays nothing, which would be a heck of a lot more fun than what I do now, but I don't -- because I'm the sole breadwinner in our family now, and I'm doing what I have to do for us to survive. Spouses shouldn't bail on each other and be selfish when the going gets tough.

    Bookmark   July 29, 2009 at 2:39PM
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Did the letter state why your SSDI denied? Were you working full time at your prior job and did you have any disability benefits or medical coverage through that job? Even though your body is not cooperating, your mind seems sharp, have you investigated any work-from-home jobs? A lot of employers allow telecommuting now for office jobs. Do you like to write? Maybe you can try to become an author. Think of jobs that require mind, not body.

I think your husband is under a lot of stress right now believing you are effectively never going to contribute to the household financially again, even though you have a long life ahead of you. This is compounded with the fact that he absolutely hates his job. I think you need to give him space to be angry about the situation (not at you) and you also need to start thinking out of the box for solutions to the financial problem. Expecting him to be miserable for the rest of his life working a job he hates is not a viable solution. Start thinking of alternatives together. Resentment toward one other is going to get you both nowhere fast.

    Bookmark   July 29, 2009 at 2:47PM
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Bumblebeez SC Zone 7

I agree with setancre completely and am so sorry for you and what you are facing.

    Bookmark   July 29, 2009 at 3:13PM
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I see there are people here who think it is unfair to burden my husband with my sickly, dead weight, and that my inability to contribute financially due to a horrible disease makes me a liability. My hubby, as of now, is free to pursue any job he wants and any lifestyle he chooses...he shall suffer no more misery on my account. I will find my own way...this is my gift to him, and my gift to myself.

That said, I should probably stop posting now, as it's only upsetting me further. I do however, thank each of you here for offering some alternative views...some I can incorporate into my life, and some I can't. Nonetheless, it was kind of you to take the time to respond. Beam me up Scotty...I have to go get problem-solving!

    Bookmark   July 29, 2009 at 3:22PM
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shiver, don't give up on SSDI yet, keep fighting. Part of my job is to help people get on Social Security for disabilities and I have NEVER seen someone get it without contesting denial decisions multiple times. There are alot of lawyers who will do these cases for free, until you win and then they will get so much of your back-pay that you will be entitled to. The Social Securtiy Admin. banks on people who won't keep fighting and give up, which is why they ALWAYS deny people 2 or 3 times. Most people usually win in the end.

If your husband is unwilling to even discuss a compromise, then I change my original response to he is a JERK. Maybe he is trying to get you to leave him, that way he won't be the "bad guy". If he's not gonna look out for you or your needs, you need to change your priorities to only worrying about yourself. I'm sorry this is happening to you.

    Bookmark   July 29, 2009 at 3:29PM
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I found it ridiculous how people on this thread supported decisions that your DH made. He is willing to take demotion and be paid $7 per hour (it is minimum wage!!! he is not 16, is he?) and people here stand by his side. It is ridiclous how some women are willing to defend a man no matter what. he didn't leave his wife, what a hero. pardon me, he is a jerk.

i would move in with my family and keep applying for disability and yes working from home is excellent idea. My daughter works from home writing advertisement for some products, all she needs is a computer and internet, nothing else. Jobs like that hard to find, but they are out there.

under the circumstances I would not rely on your husband and move on with my life. whenever man raising his kids or staying wiht his wife instead of abandoning them, he is elevated to a hero status. it is gross.

Do not listen what people here say. what he is doing IS NOT OK.

    Bookmark   July 29, 2009 at 4:11PM
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I'm with Finedreams on this one, completely. That said yes it is true most people get denied SSDI the first few trys. You my hve even been denied because you are still covered under your DH's insurance, it may have to lapse 1st.

Don't give up, seek legal aid, get your ducks in a row. You may want to look into the pharmaceutical companies programs for those who cannot afford their medications. Most have these types of programs.

I understand your feelings of resentment towards your DH, but think it is imperative you remain focused & positive about your abilities to make a plan for yourself and get yourself in a decent living situation be it with relatives or whatever so you can live healthfully. And not to EVER refer yourself this way again: "my sickly, dead weight, and that my inability to contribute financially due to a horrible disease makes me a liability."

You are not your disease.


    Bookmark   July 29, 2009 at 6:34PM
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Just curious... anyone else here suffer from a serious chronic illness or live with someone that does?

shiver, I suggest you ask the people in your support group for their advice on the matter. And, like I implied in my 2nd post, Disability usually gets denied the first time around. Try, try again. I know many families that live off disability. You may be in a rut for a while until the aid comes in, but it's doable.

At this point, I would vote against selling the house. Talk to a financial advisor first. It may be the only thing protected; they should be able to help you tremendously.

Don't give up the ship and don't let guilt and/or blame take you over. It's not you against him... it's you guys against the world. And, you are going to tune me out because of this, but I think you should talk to your doctor about your feelings -- you sound mad and depressed... which is normal in your situation -- you just may need some help.

I think some poster thinks it's easy to just say GET RID OF HIM or MOVE ON. I don't think they realize that you may not be able to simply "move on" or take care of yourself. And that just the stress of having to try could seriously hurt your health. Do you even have someone that can take care of you -- or would you just end up in a home with strangers taking care of you? Personally, I would take a caring, guitar playing, minimum wage making husband over strangers (or even my own mom). You are probably never going to have any money or savings so I'm not sure what dollar amount you are willing to compromise on, but it's kind of stupid to worry about money when you can't move or make your own way to the bathroom. I think you will realize that down the road.

You won't starve; I know you think you will... but you won't. If you are starving, find a library and post here and I will send you money. Believe me I am 99% sure you won't starve. There are too many programs in place to help. I've dealt with close to 100 chronically ill people some from poor walks of life and no one has ever starved, or ended up on the street (ok, there was one schizophrenic guy from the street -but he choose street life).

Take your husband's mental needs seriously. He really could be contemplating suicide. Yes, I know you are the sick one; but are not the only one affected by this. I know if you accept that, then you feel you must accept the blame for it  so itÂs easier to deny it and see him as a lazy guy who should be able to live up to your expectations. Maybe he physically or emotionally canÂt live the way you want him to  just like you canÂt live the way you want to --- doesnÂt make him any less of a man because he admits he canÂt do something, just like it doesnÂt make you any less of a woman. Accept each other as you are and work this out together on the same side on the same team  not as opponents. Turning against each other will get you nowhere.

I urge you to talk to your support group and read up on dealing with chronic illnesses. I can recommend some books if youÂd like. If your husband wants to be there for you, let him. And, I know you're sick, but just because you are doesn't mean you get to call all of the shots -- especially those concerning your husband. Life is full of disappointments, but sometimes, as I'm sure you know, expecations and hopes are improbable or impossible to attain. And no one is perfect...

    Bookmark   July 29, 2009 at 6:41PM
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"....unfair to burden my husband with my sickly, dead weight, and that my inability to contribute financially due to a horrible disease makes me a liability."

Appears your anger/frustration is reaching a crescendo. That's OK. It'll probably do that from time to time. Just don't be making important decisions when you're there.

Not saying there's not truth and righteous thinking in there. Just saying in terms of what needs to be accomplished that's not where to start from. Agree with catlettuce that you should not think of yourself in those terms. The good that you seek will not begin there.....but, believe me, I do get it.

Can you tell us what your limitations are right now? Can you say what kind of time line your disease typically imposes? Do you have people you can call on for help from time-to-time or are you all alone with DH?

    Bookmark   July 29, 2009 at 7:30PM
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Yes I do live with a chronic incurable autoimmune disease. And I would LOVE to quit my job and work on my art for a full time job but I know I cannot support myself nor provide our health insurance benefits by doing so. So I do what I have to do, even though I am in pain, and depressed at times because I'm not doing what I "Want" to do. That's life, it's not always fun.

I'm not saying OP should leave her DH (who I am to talk?) but I do think he is not thinking clearly about what will happen when he takes a less stable position. Perhaps he is overwhelmed with her diagnosis also, but now is not the time to make rash decisions about employment and it should be a decision they make together. She didn't decide to get sick, what if the situation were reversed? Would it be ok for her to leave him high & dry with no health insurance? Jobs are pretty hard to come by these days.

Realistically most of us are not working our "dream jobs", we have to work as a means to support our families and we pursue the things we love & enjoy on our days off, or after work. We do it because we love our spouses & kids and sometimes have to put them before our dreams.

I hope OP really strives to remain positive no matter what she chooses to do about her DH. Making yourself get up to do somthing, anything even go for a walk has such a positive impact. I don't want to walk the dogs evey night, but I make myself do it, even when I have to pop a pain pill on the way out the door. I almost always feel better when I get back-even when I'm so frustrated with life that I cry halfway through it.

Nope, no one is perfect your right on there, but somebody has to make a plan here so OP can deal with her health issues first & foremost.

"If his boss becomes angry that my husband has asked for a demotion and fires him, I will be without medical insurance and will never again be able to get any due to my pre-existing condition." -Exactly why DH should not make a job change right now. Maybe he could seek help for his depression without risking their health insurance. Anyway perhaps OP could discuss this option with her DH before either of them make any decisions when emotions are strained to say the least.

It would probably be a good thing for OP & her DH to seek some sound financial advice from an estate attorney as they are experienced in dealing with matters such as these. That could help her & DH get a plan of action in place and perhaps both gain some relief from the stress of the unknown.


    Bookmark   July 29, 2009 at 7:47PM
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My opinions of DH have been stated. However, given the magnitude of the situation, I don't see that it would matter much if he was earning twice what he is now. However much it is will be gobbled up in no time. I think the issue about him is whether or not he's going to be a help or just another problem to be dealt with. I don't know where he's at but regardless of my opinion of what has been described about him, I do think he's entitled to his sanity -- which may be with her or on his own. Perhaps he'll discover some things about himself. Perhaps he'll like them or perhaps he'll be ashamed of them or perhaps he'll be indifferent. Don't know.

Or perhaps OP is done with him regardless.

    Bookmark   July 29, 2009 at 8:08PM
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Shiver -

I don't think I can recall having ever heard a more pathetic story. Your husband sounds like he is extraordinarily selfish and immature in the extreme (sorry to be so blunt, but there it is). Someone once commented to me that a man without the motivation to care for himself will surely not be up to the task of caring for you!

The bright side to this otherwise heartbreaking story is that he is letting you now NOW, in no uncertain terms, that your needs for health, safety, and security are NOT a priority for him. If they were, he'd do everything in his power to protect you and your future together. Better to learn this now, when you're not yet so debilitated by your disease that you can't take steps to protect yourself...sad to say, there are probably others out there in a similar situation, but so far down the road that they feel there is no other option but to remain in a hopeless marriage. You are young, smart, articulate, and seem to have a pretty clear understanding of what your needs will be. I wish you good luck in extricating yourself from this situation and hope you'll find the support you'll need for dealing with your poor health. I am very sorry for your trouble.

    Bookmark   July 29, 2009 at 9:42PM
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ETA: I'd add further that it is not your illness that is the CAUSE of the difficulty in your marriage - it just happens that this crisis has revealed what was there all along. I think that you would have run up against these same issues had you had a child or children together. You've been given the chance to learn what he's made of; very sorry that this stress didn't bring out somebody better in him.

    Bookmark   July 29, 2009 at 9:55PM
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Due respect to you....NONE of us knows what we've got until we're tested. And I think most would agree this is quite a test.

The world is well-littered with spouses that bailed when they saw a future that was vastly different from their original fantasies. Common as nails.

Being twice divorced, perhaps I could be seen as being among them -- although my situation was NOTHING like this. It's the kind of thing that makes people wonder about themselves, I think.

The descriptions to date of DH's expressed attitudes and statements sicken me. But I'm not there and I don't know anything other than what OP has said.

    Bookmark   July 29, 2009 at 10:09PM
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I am sorry about the incredibly rough deal. I don't think it's quite so simple to judge the husband either, being the spouse of a seriously ill person is no picnic either, I suspect he is severely depressed. It might also be that he's experiencing a lot of stress in his particular job and another company might be better.

What has NOT been suggested, is counselling for both, and probably some ongoing therapy for husband. I also think they should get some professional advice about the house. It may be they hung onto it too long, and the husband trying the impossible (He's not likely to get a big pay rise so there's no point in resenting him for being unable to suddenly replace a second income.) It's also somewhat unfair to suggest the husband's feelings on the subject are irrelevant, clearly they need (through some expert counselling) to find a third direction.

I also suspect OP's speaking through a lot of pain and anger which would colour anyone's perspective of how things are.

It's easy to criticise another without being in their shoes.

    Bookmark   July 30, 2009 at 2:59AM
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Im really sorry for the op but i cant help but feel for the husband,realistically his future looks bleak,no kids and a sick wife,im sure he is depressed too .I absolutly agree with everything carla and pjb said

    Bookmark   July 30, 2009 at 3:23AM
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I see the forum is generally split in half regarding this issue, which is to be expected in most any situation. What I do find a little surprising is the sympathy for my husband...he is stuck with a sickly wife, without children, has financial demands, and will not be able to enjoy his life as originally planned. This is all true. But my husband gets to walk away...he is young and will remarry and have children, and I will be nothing but a bad memory. He will take minimum wage jobs until our divorce goes through so he will not have to share in the financial burden of my illness. In the meantime, I'll be lying in a nursing home for 50+ years, blind, deaf, unable to speak, and unable to move---there is no escape from this hell for me.

That said, why ruin two lives when only one really has to go down the drain? I will give him the gift of freedom...some people are just not caregivers, and you cannot make them be. I'm sure when hubby dies and God asks him why he couldn't keep his vows to his wife, God will understand that my husband's burden was too great.

    Bookmark   July 30, 2009 at 10:04AM
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If I am not willing to take care of a man in sickness, I am not going to say "I do". When we marry, we know that our partners can get paralzied tomorrow, might not have children, etc. If we are not willing to make such commitment, we should not say "I do". he said "in sickness". Now he backs off yet people feel for him. !!!! unbelivable.

Com'n people, healthy man in his 30s chooses to work for $7 an hour. That's what flipping hamburgers at McDonalds pays. You are telling me he cannot find anything better paid than that? My 21-year-old daughter who is still a college student is paid more for her job.

shiver, i am shocked people feel sympathy towards your DH instead of you. It is overall attitude in this society, people feel for healthy and strong and dismiss old, sick and weak.

People have generally very low standards for men, much lower than for women. I bet you if a man posts here how he is sick and his wife takes a way out, everyone would be on her case. people expect more from a woman. "boys will be boys". gross.

I do not suggest you divorce him, but i suggest you look for every possible help available elsewhere because you cannot rely on him. "Burden" my a$$. what a jerk.

    Bookmark   July 30, 2009 at 11:42AM
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Com'n people, healthy man in his 30s chooses to work for $7 an hour. That's what flipping hamburgers at McDonalds pays.

LOL McDonalds pays more.

Finedreams, I agree with your assessment of society's expectations and double standard, but I don't think that is the case here even if other people think so. I see it as shiver expecting something from her husband she already knew not to expect. That he doesn't step up to the challenge now is not surprising. Of course it would be nice if he did. It would be wonderful if he had the backbone to rise to the challenge, but I see him trying to relieve some of the pressure, and she already knew he cannot handle pressure. The only thing he can take any control over is his job so to him, the pressure from that is what has to go. She knew he was unmotivated. That she, her illness, has not served as an object of motivation is not unforgivable. Shiver says she knew how he is, and now her last post sounds like she's blaming him. I am hardly unsympathetic. I just know she feels desperate and is reaching for the only thing she's able to see, the one thing she can fathom as her saving grace because she is not aware of there existing anything else in the way of help. Actually, making less money will put them in a different income bracket and maybe more eligible for certain assistance programs, programs that might save them from drowning when it seems they will drown regardless of his income.

He will take minimum wage jobs until our divorce goes through so he will not have to share in the financial burden of my illness.

When did that come up? Do you have reason to think that is what he's up to?

    Bookmark   July 30, 2009 at 4:14PM
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I have to say sorry thermometer i didnt read your earlier post untill just ,and just read your last one.i think you make alot of sense.youve said exactly the words i would like to say,there is alot on my mind about this awful situation but will keep it to myself on this one

    Bookmark   July 30, 2009 at 4:57PM
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"People have generally very low standards for men, much lower than for women. I bet you if a man posts here how he is sick and his wife takes a way out, everyone would be on her case. people expect more from a woman. "boys will be boys". gross."

FWIW, I've known quite a number of situations where DW took a powder when DH became disabled. And they were quite aggressive in what they took away when they left. In each case, those that knew them thought it was sad but "understood". Among military marriages, especially, such stories are legion. I don't buy the "double-standard" statement at all.

Also I don't agree OP is "blaming" DH although she is clearly disappointed. She certainly has known his characteristics. Seems to me she's just had her hope dashed even though she knew that hope was probably unrealistic.

"...why ruin two lives when only one really has to go down the drain? I will give him the gift of freedom...some people are just not caregivers, and you cannot make them be."

In addition to OP's disappointment and despair, she's got a good heart and a good head. This is profound. Madame, I salute you.

    Bookmark   July 30, 2009 at 5:27PM
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Shiver-- one additional thought for getting your medications despite being turned down for SSDI-- I believe that most pharmaceutical firms have their own programs where they supply medications for free or at reduced rates to people who qualify. Ask your doctor or someone at your doctor's office about it. If it's a possibility, they may be able to tell you where to go or what to do.

    Bookmark   July 30, 2009 at 5:34PM
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"...I don't agree OP is "blaming" DH although she is clearly disappointed. She certainly has known his characteristics. Seems to me she's just had her hope dashed even though she knew that hope was probably unrealistic.

"...why ruin two lives when only one really has to go down the drain? I will give him the gift of freedom...some people are just not caregivers, and you cannot make them be."

In addition to OP's disappointment and despair, she's got a good heart and a good head. This is profound. Madame, I salute you..."


Asolo, thank you for the most compassionate words ever bestowed upon me. I will remember them at times when my courage starts to fail me. May this kindness be returned to you many times over.

    Bookmark   July 30, 2009 at 8:24PM
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I think the consensus is your DH is not going to step up to the plate as far as monetarily supporting the family in this crisis. I also see that this is not a surprise to you. You knew he was a type b personality but loved him for just those qualities. I'm guessing that without your income things would be tight even if he did not take the demotion. The demotion just makes it worse. NOW, you need to get as much public assistance as you can as soon as you can. With your medical needs taken care of you will be in a much better position to make the decision to leave the marriage or stay. My old grandpappy always said "you can't change a leopards spots." and maybe with the pressure off both of you you can salvage your relationship. Jenmonkey was right. Most people I've talked to who applied for disability had to contest one or more times before being approved. You also need to check into medicare/medicaid to cover medical costs. A lower wage earned by DH could very well help in qualifying for some benefits for you. Once you have your basic needs covered without relying on his job you can concentrate on your relationship or lack thereof.

    Bookmark   July 30, 2009 at 10:05PM
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Madame, I spoke from the heart. Until this moment I've never wept upon receipt of any response received. I am humbled...and grateful. Courage on your journey.

I'm gone.

    Bookmark   July 30, 2009 at 10:08PM
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Wow, this is confusing. In the OP's posts on Wednesday, her DH was seemingly still employed at 12:55 p.m because she posted "My husband has his mind set that he won't continue to work his job...", but just a short time later at 13:36 she posted "If hubby had stayed employed we could have...", indicating he had actually quit his job, not just asked for a demotion as he had intended earlier. At first I thought I misread her post, but she confirmed that he had actually quit, by posting at 15:22 that "My hubby, as of now, is free to pursue any job he wants..." I find it shocking that her DH went from protesting that he could no longer work at his current position, but would take a demotion, to actually outright quitting his place of employment, in less than an hour. Talk about not giving his wife any consideration. I certainly wouldn't have described his character as being "kind" and "loyal" as she did in the opening post, considering he made a choice of going from less income to ZERO income in the space of 41 minutes! I wish her all the best, she'll certainly need it.

    Bookmark   July 30, 2009 at 11:32PM
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Something occurs to me, shiver, and I really hope you will think about it if you haven't already. You are learning you cannot depend on your husband. I'm thinking it's possible he will leave you high and dry. Maybe that's what you meant in your post at 10:04 but not only that, I hate to think he may also mistreat you. You will be totally vulnerable and dependent on him. You already know he cannot handle pressure. Being someone's sole caregiver is a lot of pressure. Even adult children of infirm elderly lose patience. Lots of people do. It just might be wise to consider his lack of reliability as a blessing in disguise and use it to begin doing everything you can to become independent of his income. Ask on other forums on this site (caring for elderly a good place to begin) and other sites for people to share their knowledge about public assistance programs and various agencies, like sovra did. I know he is all you can see, but I'm hoping you will stop looking to your husband and take as much control of your life as you can while you can.

    Bookmark   July 30, 2009 at 11:34PM
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What a sad situation. What disease do you have?

    Bookmark   July 30, 2009 at 11:55PM
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if he actually quit his job without asking you, you are without health insurance right now. maybe his actions are blessings as you could qualify for state benefits since you have no insurance and no income. I wonder how many people still think "poor DH".

if in fact he quit his job, I wonder if you have to file for divorce as quickly as possible, so you can qualify for assistance as a single person. i hope you can move in with your family at least for now. also start looking for jobs that you can do at home, something Internet based.

I wish all the best. you sound like a wonderful and strong person.

    Bookmark   July 31, 2009 at 9:28AM
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Shiver, what symptoms did you have that led to a diagnosis? And at what stage are you now? What kind of time frame are you looking at before becoming totally incapacitated?

Perhaps your disease is one that is being studied? Is it possible you could become part of a trial study at a medical institution? That way at least your medications would be supplied to you?

Pardon me if I'm getting too personal but what illness are you suffering from?

    Bookmark   July 31, 2009 at 10:17AM
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I don't usually post about my situation any more but will to give the OP some background on myself as I've been there so to speak.

I know what it's like to be disabled; injured my back almost 10 years ago, in my prime. At 1st I had some bad days, now I'm lucky if I have some good hours. It's very hard on me, I was the same way, loved to work even though I didn't have a high paying job; I've worked since I was 11; I didn't know anything but working.

Having to rely on other people is hard. Even in my shape, the people I do have in my life, if I am having a good day/hour, I am there for them. Hard to say that it gets reciprocated. I hate asking people for a favor, most don't realize that if I'm asking, I truly do need their help.

Marriage - I don't know how we survived as long as we have. We've discussed divorce a few times, some how, we've always managed to work through it. It has not been easy & it's in the back of my mind that at some point he may say he's had enough. I know it is hard on my husband to see me in so much pain, it's hard on me for him to see it.

I know high medical bills. Even if you get medicare - they dictate what drugs they will pay for. I currently have 2 health/script insurances, my secondary will not cover my pain meds since I don't take generic. They will not cover the sleeping pill I take, they want me to back track and take something that has already been ruled out as not working. Even with a letter of necessity they will not cover it. The primary has given me issues - also do not want to cover brand - normally it's about $600-$800 for one med for a month, yesterday they finally "covered" it at $430.

I know what it's like to be afraid of your health declining due to not being able to afford medications. A few months ago not only would they not cover brand they would not cover generic, my local CVS covered the generic under their own plan. Taking generic for one month set me back so much. So far it's been 2 months that I've been back on brand & my pain level is worst then when I 1st took the generic.

Shiver, I get where you are coming from & I'm sorry. If it was me, I would 1st look at the last bail out by Obama for the house. It's possible you might qualify for help. We did not last I looked. I understand you will have a negative loss with the house; but maybe that's what you have to do. Call your mortgage company, as well as start looking at what the market is like in your area. Check out the real estate (buying & selling) forum, there are a lot of good posts there that may help you.

You 2 need to sit down and talk to see if the marriage can be saved or not; I'd imagine you are emotionally checking out right now; I think most people would depending on what he is really like at home. We don't know if he's a loving husband, you say he is sensitive to your condition, but is he really? Wouldn't he step up long enough until a solution can be figured out with the house? It's also very possible that he's sensitive now but will not continue to be. Does he have a temper? If so, be prepared for him to blow the longer you are disabled.

As far as your illness, I don't know how I'd feel in your situation. I know I would not want to live like that, living with the level of pain I have is hard; and feel that if it was an animal with something similar, we are given the option to humanely stop them from suffering.

Do look for a clinical trial. Depending on what you are diagnosed with, there may be a break through; might be clinical trials. There are a lot of knowledgeable people posting on your thread, ones that know how to find the information that might help you.

Government assistance - get an attorney. They turned me down 3 times, I was on my last appeal. If you are in NJ, I have a great attorney I can recommend.

Your husband & his job - what if he gave music lessons? Can he make some money doing that? As far as him wanting to be demoted, if it was to care for you, so that he would have less hours/responsibility so that he's got more time/patience to step up at home, I might suggest him not going so far down but somewhere in the middle; but realistically, that isn't going to pay the bills. From what I remember reading of your posts, he's wanting to be demoted for himself because he can't handle it not so that he can help you. To me, he's not seeing the whole picture and I'm not sure he's going to. He needs to step up right now to provide until you can get out of the house situation, I'm not sure he is actually "getting it" about just how poor you will be and that you will lose it all.

Counseling? I'm not sure if you can afford it; is there a church around? I do think you both need counseling but what the outcome will be; none of us can say.

If your marriage dissolves, what will happen to you? Will your family take you in?

    Bookmark   July 31, 2009 at 11:14AM
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First of all, let me tell you that I will not name my disease or get into many details about that...for one, it is a reasonably rare disease that someone reading this could identify me from. I also do not like that fact that everyone seems to have a "cure" for me, everything from eating more red cabage, to taking drinking some weird juice, to praying more and sinning less, to rubbing various oils on my skin. So I'm not going to give many details about it, but I will say that at this point I'm operating at about 50% of normal function (which is why I probably didn't get disability). I could go to being 100% disabled in anything from 3 months to 3 years without treatment, and with treatment, I can *maybe* get a decade before I'm totally fu*cked, possible even a few more years if I get really, really lucky (most don't though).

Another thing which reading the last posts have helped me understand...the process of my hubby going from being employed, to quitting his job and getting a minimume wage job actually took about a week. He told me he was going to do it last week, and I protested...on the day I made the first post he had a meeting with his boss, and that's when he quit. I was begging him not to, and I realize that begging is something I should NEVER be doing. My hubby, however, had been contemplating doing this for the past year and a half, so to him, this was not a quick process. To me, I felt like I got hit by a train.

Through various conversations with my hubby in these last days, it has become clear to me that he doesn't have the strength to walk down this road with me, and I most certainly do not have the strength to drag him kicking and screaming. I think we will part very soon. Another poster said "be glad you found this out now, verses later when you're more disabled", and I WHOLE-HEARTEDLY AGREE. My parents live in my town and have vowed to help me right through to the bitter end, as much as they can, even though they are limited by age.

To be fair to my husband, he was never abusive or mistreated me in any way...he was indeed a kind and gentle man, with a beautiful creative spirit. But he just cannot face this situation. I had hoped and hoped that he could, so I stayed in denial for this last year and a half, but now the truth has set us free.

I think I'm going to stop posting on this thread, as I really feel I got everything that I needed from it. To those who spoke words of encouragment, kindness, or spoke the truth to me about my hubby not being able to manage this, I thank you. To those who were a bit harsh with me, I was still able to see what my hubby may be thinking through your words. I was able to calm my panic (though I'm sure there will be more panic in the future), and begin to accept the situation for what it was. This is what internet support groups are all about. Thank you so much....good luck to you, and goodbye.

    Bookmark   July 31, 2009 at 11:27AM
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All the best to you Shiver, ill keep you in my thougts & send healing, good vibes your way. I hope you do drop by now & then to say Hello and let us know how you are.

    Bookmark   July 31, 2009 at 6:33PM
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Shiver, I hope you saw my post? You posted 15 minutes after me so I'm not sure. I know how long it takes me to write a post your size.

With your last post, if it was me, I'd really start to get serious about letting him go. Right now you are fortunate to have family to help you which you may not have the longer you stay, especially if they disagree with you staying with him since he's obviously not going to step up. If you stay, you'll always be wondering when he's going to ditch you. You're better off doing this on your own terms right now while you are able to control the situation.

I saw another post at another place almost similar to yours but from the husbands view. Email me and I will give you the link so that you can figure out if it's him. He pretty much said the same thing about the illness and the wife being bed-bound in nursing care. He was whining about the medical bills and why is he responsible for it. The last time he posted he hadn't moved out yet but it sounded like he was.

I looked for the link but haven't found it so far after scanning 10 pages. If I do find it I will post some of what he said.

Good luck to you.

    Bookmark   July 31, 2009 at 8:02PM
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I really think you are going through a depressed stage of your illness and are making a big mistake! You will probably never be able to take care of yourself and will always have to depend on someone, that's just a fact... who better to go through it with you than your husband?

I know you are disappointed in him, I know you feel guilty -- it's not as big of a deal as you are making it. If my husband told me today that he had to quit his job because he was feeling suicidal because of it, I would urge him to even if I knew it meant huge financial problems. You've been sick for 2 years, right? He didn't just go quit the first week. He's trying and doing the 'best he can'. Why do you have to judge him so harshly? You would think in your predicament you would know better... just because his problem may be more mental doesn't mean it's not real. Why can't YOU work again, oh, yeah, you're sick... Well, so is he -- get it?? He's stuck with you for 2 years and your leaving him now when he's at a low in his life?

I know how it feels... you feel you have lost control of almost everything in your life -- and one thing you thought you may have some control in (his job) he even took away from you. Big Woop - get over it. You think your parents or others won't let you down in ways that you haven't even imagined yet? I know I'm being mean.. but I am saying this for your own good. Take some time to think about this; don't make a rash decision and see if you can both get some counseling.

There is no need to rush into a divorce - quit acting out of anger/depression. It's only going to hurt you in the long run.

And, you can't have it both ways... either you're leaving him cause you think he's a lazy SOB who you can't depend on, or you really do love him and want him to get on with his life with another women and not have to go through all your suffering with you. You seem to be all over the place with your comments about him... is he this great guy who deserves a better life, or are you kicking the A-Hole to the curb? Which is it? At least get your motive consistant before you act. If you are truly leaving him because you want better for him -- I'd talk to him about that. He may really want to stay and be with you.

You've never said... Do you love your husband?

    Bookmark   August 1, 2009 at 1:21AM
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Carla, stop this. I loved and have always loved my husband, and would have tried to find a way to stay with him if possible, regardless of the job situation. The job issue was just a catalyst for what was really going on with him. He has asked me to "let him go and not condemn him to a life he can't bear, financially or otherwise." I love him enough to do so. For the record, he has never helped with my physical care, my mom has...hubby felt uncomfortable doing it. But I never loved this man for the work he could do (though yes, at the end, I begged him to keep his job for medical insurance purposes). I loved him for his beautiful spirit. Still though, I had hoped that due to this extraordinary crisis he would find extrordinary strength...I am hurt that it didn't happen, but it really isn't a surprise.

I hope at this time you'll stop with trying to assassinate my character here. You say you work with the chronically ill, but I think you may be burned out at this time, and need to direct your anger elsewhere.

    Bookmark   August 1, 2009 at 9:56AM
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PS In my very first post, when I started this thread, I said I loved my husband.

    Bookmark   August 1, 2009 at 10:07AM
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carla your posts become increasingly inappropriate on this thread. You kicking the person who is already down. please do not do that, it accomplished nothing for her.
"He's stuck with you for 2 years" is an awful thing to say to seriously ill person. And if you do work with termninally ill, I feel bad for them. Your last post made me sick, no compassion whatsoever.

I agree with shiver, direct your anger elsewhetre, you chose the wrong person.

shiver, please do not give up finding good treatment and getting disability benefits. i am glad you have a good family who are willing to help, hopefully you'll be moving in with them soon. also please rely on support groups.

PS carla read people's posts more carefully before you jump on people. "He has asked me to "let him go and not condemn him to a life he can't bear, financially or otherwise." OP's husband left her, she didn't leave him, you are kicking ill person whose husband left her. And your speeches of him taking proper care of her make no sense since her mother was the one doing it, not him. i don't know what causes you to always defend men (it is not the first thrrad) no matter what they do and always attack women. But this thread was a very wrong place to do it.

    Bookmark   August 2, 2009 at 2:44PM
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I think Carla is trying to provide some much needed balance to this thread.

Yes, the OP's situation is tragic, and I'm not lacking in sympathy for her. But it is also tragic for her husband. No, not as tragic, but then, he doesn't seem to have the depth of emotional resources the OP has. But attempting to understand his behaivior is not the same as excusing it. Both spouses have a responsibility to the marriage. And now, in some ways, due to her illness, OP is unable to carry hers. In other ways, due to his nature and temperment, Hubby is unable to carry his. Certainly his 'reasons' are much less sympathetic than hers -- but they're valid. That's simply who he is.

I think Carla was asking if there were ways Hubby could be supportive within the framework of his limitations.
And asking if there were ways Shiver could contribute financially within her physical limitations.
Yes, these are tough questions. But they're also very necessary to ask, and they can't be off limits!

Asking them does not make Carla heartless. In fact, they show the more practical side to her compassion -- because life will go on, and the choices Shiver and her Hubby are making now will help shape the quality of that future.

    Bookmark   August 3, 2009 at 12:17PM
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I agree with Sweeby. I didn't interpret Carla as being heartless. Her questions appeared professional. Tough questions? Perhaps. Heartless, no. Anyone here who has cared for someone with a terminal illness may understand these questions need asking.

    Bookmark   August 3, 2009 at 2:31PM
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I think anyone/everyone should post whatever they want to. If you agree and/or have something to add, post it. If you think somebody's full of it, post that.

Let 'er buck. If you don't want to know what other people think, stay away. It's what forums are all about. I wouldn't change it.

    Bookmark   August 3, 2009 at 8:33PM
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Thank you, asolo.

    Bookmark   August 3, 2009 at 9:11PM
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"But it is also tragic for her husband."
"I think Carla was asking if there were ways Hubby could be supportive within the framework of his limitations. "

she asked those questions after husband already asked to leave his wife. he is gone what she is asking about him being supportive? like she has to chase him on a street?

he already left her, what is so tragic for him? these questions would be all right in a timely manner but asking all these questions and praising a guy after he already left was just pointless. he asked her to allow him to leave and he is moving on, I don't see what is targic for him? do people read posts or just type whatever? OP says he left her yet people say oh com'n you must love him. it was not about his job, it was about him leaving their marriage, so what was the need to attack OP and praise her ex instead of providing some compassion.

next time people post how they get sick and their spouses left them i will post "oh com'n, what a poor guy, don't you love him?" i'll see how people like it.

    Bookmark   August 4, 2009 at 4:01PM
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"If you think somebody's full of it, post that."

yeap, and that's what I posted

    Bookmark   August 4, 2009 at 4:02PM
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In my defense... shiver, I don't think you ever said your husband didn't want to stay with you until after my last post. I was reading that you 'thought' he was bailing on you, and not living up to your expectations because of him lowering his job situation and your perceived future financial problems because of it. I was reading that you thought that in and of itself was bailing on you, I didn't. I read that 'you' were letting him go.. not that he was running away. Sorry.

Obviously, if he's totally leaving you there's no decision to make on your part and your post becomes one of feeling sorry for your situation and not really offering much advice about him. I do feel sorry because now you may have no insurance, no income at all, and no home whatsoever -- or you'll have to split what little there is.

So... Sorry... your husband totally bailed on you and left you high and dry when you were sick. He is a complete a-hole. There... make you feel better? I now pretty much dislike your husband too.

Although, I suspect you may be stretching your story a bit. I'm not sure he left you high and dry. I think he maybe he just didn't do things on your terms, you made mountains out of molehills, and maybe even gave ultimatums, etc. Only you know, and I am sorry if he totally left on his own accord. But I think there's a chance he's not totally gone and I urge you to reconsider if that is the case. If, I'm wrong.. I'm not really hurting anyone (except maybe finedreams, who may at this time be having a heart attack or at least a severe spike in blood pressure).

shiver, don't forget I work with the chronically ill. Despite what you think, I really am enjoying it and find it very fulfilling. I see the phases, the denials, the anger, the blame games they play, the acceptance, etc.. Just because I don't agree with you or say things you want to hear doesn't mean I don't know what you are going through. I think you want to be right. I think you want to say you're going to be starving in the street; I think you want to say you're husband is a bad guy and you're going to do what you can to make it come true. You're a victim and you're playing the part wonderfully. Hopefully, you will realize you are doing this and come around to see that playing the victim will generally only victimize and hurt you more. I know you're sick; I know it's not fair; I know you did nothing wrong to deserve this, and I know how sad, desperate and alone you feel - on top of being sick.

Two things can happen... you can either dig yourself deeper into a depression or you can hopefully with time and help come out of this phase. Again, I could recommend some books and I do urge you to talk to your support group, and your doctor or a counselor. Sadly, even if you weren't depressed before, I'm pretty sure with your husband leaving (either on his own accord or with your strong push), you will be. It's hard enough to take on a serious chronic illness by itself. I really do understand what you are going through... and shiver, I'm not trying to attack your character... just trying to make you realize some stuff... I am trying to help you. I can not stress to you enough how much I KNOW WHAT YOU ARE GOING THROUGH! You're not alone. I just don't want you to make wrong decisions when you're not in the right mind set. Good luck. I sincerely hope you find some peace and come to terms as well as anyone could that has to deal with what your dealing with.

Believe it or not sickness can bring about some benefits. Little things are recognized and appreciated more, you find out who you friends really are (and they will be the good people), you'll find money is not really all that important, and you may just have, and take, the time to stop and smell the roses.

Here's my quote for the day: A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses. (I read this almost every day and have gain great inspiration from it). Find your silver lining...

Again, good luck to you.

    Bookmark   August 4, 2009 at 9:53PM
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"Believe it or not sickness can bring about some benefits."

"A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses. (I read this almost every day and have gain great inspiration from it). Find your silver lining..."

Oh, Carla! You've outdone yourself! Unbelievable! This is utter, complete, totally offensive garbonzo beans. About as inspirational as childhood leukemia. I can hardly believe you'd heap this salted manure into an obviously open wound. Is this what passes for wisdom in your world?

    Bookmark   August 5, 2009 at 12:00AM
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Again carla i absolutly agree with you on everything you say,i too think the op has stretched the story,she changes it in the same day to often i think the husband is still with her ,sorry but i do, i think she is making some things up now

    Bookmark   August 5, 2009 at 3:32AM
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I think you want to be right. I think you want to say you're going to be starving in the street; I think you want to say you're husband is a bad guy and you're going to do what you can to make it come true. You're a victim and you're playing the part wonderfully.

Wow, that's astonishingly heartless. It frightens me that you work with the chronically ill, if this is your general attitude. You say that you enjoy doing so, but all I perceive is someone who has been warped by the experience, and has little to no compassion left.

    Bookmark   August 5, 2009 at 1:32PM
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"You're a victim and you're playing the part wonderfully."

"Although, I suspect you may be stretching your story a bit."

"Believe it or not sickness can bring about some benefits."

how "nice"...good job carla...

    Bookmark   August 5, 2009 at 2:04PM
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I once worked with someone who was dealt a very hard hand in life, through no fault of his own. He was unable to regain the life he had formerly, so he was always trying to garner sympathy for his ill fortune. I noticed that he occasionally said something good about his ex-wife, which would instigate even more sympathy for him, in the way of "You're a saint to have lasted that long with her, I don't know how you did it..." and I soon began to realize that perhaps he knew people would become suspicious if he always made her appear to be pure evil, and himself, the totally helpless victim. Nevertheless, we eventually discovered that his stories were hugely embellished, perhaps because his situation was so bad that sympathy was about the only thing he could use to keep his spirits up.

I don't feel we can assume that the OP might be embellishing things to gain our sympathy, because we have no real way of knowing. But if that is the case, it means she feels completely incapable of pulling herself up enough to investigate the measures posters have mentioned, to help her situation. I can't help but feel sorry for anyone who has sunk so low in hope. So either way, she has my heartfelt sympathy.

    Bookmark   August 6, 2009 at 6:00PM
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I just came back to revisit this thread. I quit reading when I realized that no matter what anyone suggested, OP had been there done that or had some other excuse for it not working. I don't want to appear hard hearted but you have to want help before you can get it.

I wish you all the best but it's time now to take the advise and do something for yourself as no one on a forum can come to your rescue. We can only give you ideas and things to try. You have to actually do the work.

    Bookmark   August 6, 2009 at 9:44PM
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My heart goes out to you in a very big way...I have had cancer, lost my job and my husband left me. It was amazing to see who I could count on and who totally avoided me. I don't think that is unusual at all.

If I had any wise words to offer,I would say to stop focusing on your husband right now. He will either stand with you or go his own way. You have no power to change that. Try to find a lawyer who will work for free and fight for your disability rights. Somebody in your support group or medical team must know of somebody like that. You have to use your excellent intelligence to dig in now and fight, no time for regrets, lost love, etc. You are in a battlefield; take up arms.

I'm not a very big prayer but I will pray for you and support you on here in any way I can.
With love,

    Bookmark   August 7, 2009 at 2:55AM
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