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shiver_mn

Serious illness causing marriage difficulties...advice?

shiver
14 years ago

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 hours...to 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.

Comments (72)

  • Bumblebeez SC Zone 7
    14 years ago
    last modified: 9 years ago

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

  • shiver
    Original Author
    14 years ago
    last modified: 9 years ago

    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!

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  • jennmonkey
    14 years ago
    last modified: 9 years ago

    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.

  • finedreams
    14 years ago
    last modified: 9 years ago

    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.

  • catlettuce
    14 years ago
    last modified: 9 years ago

    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.

    HUGS,
    ~Cat

  • carla35
    14 years ago
    last modified: 9 years ago

    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...

  • asolo
    14 years ago
    last modified: 9 years ago

    "....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?

  • catlettuce
    14 years ago
    last modified: 9 years ago

    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.

    ~Cat

  • asolo
    14 years ago
    last modified: 9 years ago

    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.

  • teachbls
    14 years ago
    last modified: 9 years ago

    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.

  • teachbls
    14 years ago
    last modified: 9 years ago

    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.

  • asolo
    14 years ago
    last modified: 9 years ago

    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.

  • pjb999
    14 years ago
    last modified: 9 years ago

    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.

  • tracystoke
    14 years ago
    last modified: 9 years ago

    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

  • shiver
    Original Author
    14 years ago
    last modified: 9 years ago

    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.

  • finedreams
    14 years ago
    last modified: 9 years ago

    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.

  • thermometer
    14 years ago
    last modified: 9 years ago

    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?

  • tracystoke
    14 years ago
    last modified: 9 years ago

    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

  • asolo
    14 years ago
    last modified: 9 years ago

    "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.

  • sovra
    14 years ago
    last modified: 9 years ago

    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.

  • shiver
    Original Author
    14 years ago
    last modified: 9 years ago

    "...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.

  • pris
    14 years ago
    last modified: 9 years ago

    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.

  • asolo
    14 years ago
    last modified: 9 years ago

    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.

  • amicus
    14 years ago
    last modified: 9 years ago

    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.

  • thermometer
    14 years ago
    last modified: 9 years ago

    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.

  • golddust
    14 years ago
    last modified: 9 years ago

    What a sad situation. What disease do you have?

  • finedreams
    14 years ago
    last modified: 9 years ago

    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.

  • yborgal
    14 years ago

    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?

  • theroselvr
    14 years ago
    last modified: 9 years ago

    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?

  • shiver
    Original Author
    14 years ago
    last modified: 9 years ago

    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.

  • catlettuce
    14 years ago
    last modified: 9 years ago

    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.
    Hugs,
    Cat

  • theroselvr
    14 years ago
    last modified: 9 years ago

    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.

  • carla35
    14 years ago
    last modified: 9 years ago

    shiver,

    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?

  • shiver
    Original Author
    14 years ago
    last modified: 9 years ago

    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.

  • shiver
    Original Author
    14 years ago
    last modified: 9 years ago

    PS In my very first post, when I started this thread, I said I loved my husband.

  • finedreams
    14 years ago
    last modified: 9 years ago

    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.

  • sweeby
    14 years ago
    last modified: 9 years ago

    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.

  • golddust
    14 years ago
    last modified: 9 years ago

    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.

  • asolo
    14 years ago
    last modified: 9 years ago

    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.

  • yborgal
    14 years ago

    Thank you, asolo.

  • finedreams
    14 years ago
    last modified: 9 years ago

    "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.

  • finedreams
    14 years ago
    last modified: 9 years ago

    "If you think somebody's full of it, post that."

    yeap, and that's what I posted

  • carla35
    14 years ago
    last modified: 9 years ago

    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.

  • asolo
    14 years ago
    last modified: 9 years ago

    "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?

  • tracystoke
    14 years ago
    last modified: 9 years ago

    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

  • rivkadr
    14 years ago
    last modified: 9 years ago

    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.

  • finedreams
    14 years ago
    last modified: 9 years ago

    "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...

  • amicus
    14 years ago
    last modified: 9 years ago

    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.

  • pris
    14 years ago
    last modified: 9 years ago

    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.

  • scarlett2001
    14 years ago
    last modified: 9 years ago

    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,
    Scarlett

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