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A couple of days ago, a woman wrote to me in the "ASK Michelle" section and told me her heartfelt, honest, and I think heart-wrenching story about her ill husband, who has multiple sclerosis, and the very real difficulties about living with someone who has changed in so many ways over the years. Many of the changes have affected his personality and made him very difficult to live with at times. I wrote her back and told her how I could totally see where she was coming from in terms of her emotions, and that I understood what she was saying. But I also wanted to post her story here (see below), so others could see it and reply to her and give her more suggestions, support and a sense of hope and that she is not alone. Please, if anyone has anything they'd like to tell her, I would really appreciate it--I'm sending her this link so she can watch for more replies. For example, do you know of another woman who has gone through this, and/or do you know of any resources for her? Thank you everyone!
"I am a 37year old female, well educated and completely healthy. I married my husband 8 years ago, knowing that he has multiple sclerosis. He was a vibrant, fun, clever and interesting person. Over the past 8 years, he has physically deteriorated (developed seizures, incontinence, difficulty walking distances, had a pulmonary embolism and now suffers from depression (but who wouldn't)). He no longer works, he stays home and does some household chores, is obsessed with our finances (we are doing ok), is mean and angry, hardly talks to me, hasn't held me or made love to me in years and honestly I don't even think that he likes me. I really think that I could deal with the physical limitations, it's the emotional stuff that is wearing me down. I've been seeing a counselor who asks me "How much more are you willing to take?" and I just don't know anymore. I'm so lonely and feel so trapped. He refuses to see a counselor or psychiatrist. I feel like an awful person for even thinking of leaving him, but I'm so unhappy that I don't know what else to do. I guess my question is "what kind of woman leaves a sick spouse?"
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I can't imagine the anguish, pain and frustration you must be going through. And I can't imagine the anger, pain and frustration your DH is suffering with his MS.
Years ago, I had a client who was diagnosed with MS. He was in his 40's, a successful businessman and well-liked. Then, he turned "evil." Dependent upon a wheelchair, he'd have someone wheel him into my office where he would sit with his cronies watching the stock market results (I was an investment banker, back then). Whereas he had once been a joy to be around, he became a pain in the rear. We all tried to be understanding and supportive of him, but we felt so sorry for - even protective of - his wife, who was visibly ragged by his constant nagging and bullying. We finally all got together to hold an intervention and told him how badly he was behaving, and saying that we knew it was because he was so angry about his condition. The good news is that he listened. His condition worsened over time, but, at least for a while, he had his cronies to talk to, his wife got a little peace and a break away from him, and they were able to work things out.
One day, a quadriplegic was wheeled into my office. I had talked to him over the phone several times, but had never met him. When he was brought in, the fellow with MS realized how much better off he was and started changing his tune. Sometimes, it takes a reality check - and a few good friends - to get a man out of his bad attitude. I think men take physical weakness much harder than women because they think they're expected to be our pillars of strength - and we probably do.
May YOU find the strength. Know that you can come here and find some moral support.
May 19, 2009 - 4:22pmThis Comment
Dear Lady from pa: I DO understand "my husband's side of it" even though I don't have the disease and he does. I am a mature, fair-minded, patient, understanding, woman who has the ability to "not just think of myself and how I feel, but how another feels". I have done this all the time, and still DO; however, I do also think that if I don't think of myself, then no one else will (even though my husband SAYS he does, to me ACTIONS SPEAKS LOUDER THAN WORDS), yes, even regardless of his "illness". Since I posted over a month ago he sort of gave me a "reprieve" at the moment from his crap attitude (yes, I understood what it was at the time, I knew it was either/all the disease/treatments/meds/mental which was affecting him... Well, in HIS case, I FINALLY "had a talk" with him when I was at the end of my rope, and he MUST have "listened" because "miraculously" he started being "nicer" toward me and in general (even my daughter noticed it, she lives with us and just had a new baby). So, that proved to me that for HIM, it was MENTAL and not the treatments/meds. I KNOW what his meds do as I educate myself on the side-effects of his drugs and they are NOT what makes him a jerk in particular-- THAT is his "mental attitude", not the treatments/drugs themself, but his feelings/thoughts about having the disease (which I also understand and give him the benefit of the doubt on). My point is that I have not wanted to take CRAP off him because he's in a bad mood because he's got ESRD, even if I know it's bad for him to have it. I STILL think that if I was the one who got diagnosed that I would do everything in my power to NOT treat him or anyone else like crap, because that is MY personality and obviously he does NOT have my personality. All I can say is that it's a good thing he started to be "nice" for a change because with all the stress we have to live with (financial, emotional, physical, his illness, my daughter living with us with a new baby, etc.) that I would not have been able to continue to cope with him with his nasty attitude. Now that he's being nicer at the moment that helped me (1) to realize he IS able/capable of being nice, (2) that I am obviously better able to cope with/tolerate/deal with him if he's not being nasty and it makes my life easier and somewhat better (which I'm hoping does not mean that I'm not "detaching" enough to have either his bad/nice attitude affect me at all, (3) and that if he "turns bad/nasty again" that I will start AGAIN "wanting to get out/leave him". I just can't take it and now I pretty much know that even more now, seeing BOTH sides of him take place from Jan-May since he was diagnosed. I see now that he can be nice and not nasty and also that his condition seems to be possibly improving with his ESRD so he should be happy about that. I try to be hopeful and positive with him and I have NOT ever yet to this day been mean, nasty, rude, disrespectful, etc. to him, and again, nor do I plan to be as I posted last month. I still don't really want to be in this situation, but I am in it and am "doing the right thing" ("Just be there when he needs you".) Well, I am doing that. The other side to that is that I have to be here for MYSELF if he's not going to. So that makes it a one-sided relationship when you're with someone who's ill I guess?! Seems so. Right now he's "doing better". I am hesitant to let myself believe it "will stay this way from now on". I do always feel I must STAY REALISTIC and not "what I wish things would be". I don't believe they will be (regarding intimacy, our "dreams", finances, etc.). I still feel as though I would rather be alone and on my own; however, I am going to really study over what Dave Balch wrote, as his post I think I can really relate to (about the questions of leaving or staying). Thank you all for your posts, sharing of experiences, and all.
May 18, 2009 - 11:19amNew Nan from Texas
This Comment
Coach from virginia is right! I cried the whole time I was reading what she wrote. The book is dead on! In 1998 I lost my kidneys and had a baby at 25 weeks on the dot and till this day they're good days and bad days. I had a kidney transplant that lasted me six year I will go thursday to get a dialysis access put in. When i had my transplant everything was way better even though I had to drink ton of medication but now that I rejected I have to start the whole process again like the book. It's not hard being sick. No one can even start to imagine how it feels to be so ill that your whole life is turned upside down? Then you have to worry about if this is my last day then who would take care of the kids? What would happen to the house, the cars, would they keep the kids together etc..? Yes, rude sometimes not because we want to it's just life. GOd Bless. Just be there when he need you.
May 13, 2009 - 12:56pmLady from pa
This Comment
I can identify with more of what has been written here than any of you can imagine. I have been caregiver for my wife through four bouts with breast cancer over the last seven years and, although she is doing well now, I have my own challenges in keeping things going as I have more responsibilities than I bargained for.
Should you leave? That's a question only you can answer for yourself, but as was mentioned above you have to consider the consequences. Will you feel guilty? Will you be able to live with your decision? How will you feel when he dies if you weren't there for him? Are you the type of person that cares what other people think? If so, how will you deal with the criticism of your choice from those who don't and cannot understand?
It seems to me that one way to look at it is to consider the consequences of making the wrong choice. In other words, would it be better to leave and be wrong or to stay and be wrong? Which will be harder to rectify: staying or leaving? My guess is that it would be easier to stay and be wrong than to leave and be wrong because it would be easier to leave than to come back.
Given that it would be easier to stay and be wrong, how about trying some coping ideas? I have learned a lot about dealing with this and have some specific suggestions (I realize that all of these things are easy to say but much harder to do, but I'm going to throw them out there anyway!):
1. Try to concentrate on the good things in your life rather than the bad things. I often spent a lot of time feeling resentful at the position I was in, but when I started looking at the things that were working, things seemed much better.
2. Accept a "new normal." A lot of the stress we feel is because we want things to be the way they were or the way we want them to be. They won't. Face it, accept it, and deal with it. Realize that "normal" is no longer what it used to be and that you have a new standard.
3. It is common for caregivers to fall into "victimhood" - I certainly did! Create something that is just for you. What do you like to do? If you like to garden, for example, then start a garden and work in it as often as you can; you will feel like it is your little "safe-haven" in the world.
4. Take time for yourself. It doesn't have to be a big thing like an Hawaiian vaction, but rather plan to have lunch with some friends... AND DON'T TALK ABOUT YOUR SITUATION. Take a 2-hour "vacation" from it and have a normal, fun lunch.
5. Look forward to something. Again, this doesn't have to be a big deal, and it is someting that you and your spouse can even do together. For example, make a big deal out of your (or his) favorite TV show; light some candles, make some popcorn, etc. Each week, then, you can look forward to this special time. Perhaps having this to look forward to will help him out of his funk for at least a little while.
6. Laugh. Seems impossible, doesn't it? Did you know that you can receive the benefits of laughter by forcing a fake laugh? It's true. Try to find some humor in your situation - it can be quite a challenge, but it's there if you look hard enough. When my wife and I were walking into the hospital for her mastectomy she stopped suddenly and said, "I forgot to bring my boob!" I said, "What do you mean? I'm right here!" It didn't change anything, but we laughed and felt better and that's what humor is for: to help you feel better.
7. There is a phenomenon called "compassion fatigue" - I was surprised and relieved to know that it is so common that there is actually a term for it. I suffer from it, and it sounds like most of the folks on this thread do too. Sometimes you give all you have and there is simply nothing left to give, yet the demands on you don't change. That makes it all the more important to try some of the things I mentioned above in order to recharge your batteries.
April 20, 2009 - 2:17pmThis Comment
Thank you Dave Balch! your possitive words brought confort to me. A little bit ago I was feeiling bitter and hopeless. I'm 33 years old and I have been married to my husband almost 6 years. Two months after we got married his mother passed away and few weeks after he was diagnosed with cerrhosis of the liver in almost in the late stages. Sometimes I find myself so angry at him because I feel cheated. We didn't get to enjoy our honymoon stage because so many horrible things happened. There where times when I would wake up in the morning wondering if today was my husband's last day. I stopped living our and my life worring about "our" last moments together. Your comment and God have made me love my husband regardless how bad I feel for myself. In situations like this I have to sacrifice myself and put my husband first. One day he will be gone and I want to have a clean heart that I loved him the best I could. I have to do it first because God has comanded me as a wife to take care of him and second, I want our son to see and to know that his father was loved and taken care of.
May 25, 2009 - 5:22pmThis Comment
Dear Dave:
May 18, 2009 - 11:56amThank you ever so much for sharing your story of coping/living with your wife's breast cancer situation. What you wrote hit home for me EXACTLY in that you wrote about those "internal questions", the biggies, and both sides of the staying/leaving scenario, which I have been struggling very hard with. It also helps that you're writing from 7 years experience. I've just passed through 7 years of grieving experience over the loss of my son and just the exact 7 year date (Jan. 28, 2009) was the date my husband was thrown out of hospital after having been diagnosed with his End Stage Renal Disease (ESRD), so now I'm into this, as you say, "new normal", which was very hard for me since I had already been learning a "new normal" for the past 7 years since my son died, now I'm having to learn yet and still ANOTHER "new normal". So, I can REALLY identify/relate to everything you wrote, including the 7 points you made. I've been keeping active with my "recovery/self-work" and was already trying to focus on/remember these things you wrote about (concentrating/focusing on myself, finding "other things/people" to do things with, making jokes (which we do since my husband has the epitome of British humour, very droll and dry), also not ALWAYS talking about the situation with people, trying to look for the "good things" (I make a grateful list often), and your point 7 which was "compassion fatigue" was a good one I had not yet realized, but this shed a LOT of light on the situation (by giving it a "name", even if I was sort of aware of it). Your post has helped me to focus more on the side of "staying" and "adjusting to it" (acceptance IS the "final stage of grief", grief being a "loss of any type" and our situation is a loss of a LOT of things both tangible and intangible", thus yet and still ANOTHER grief process, which I acknowledge, but I'm not sure HE does, although that's HIS prerogative, not mine, I can't MAKE him "deal with this", I can only let him know what I can/cannot "live with" on his part, thus holding HIM responsible for what he CAN do, as I don't expect him to do what he can't). I still am not entirely comfortable with the situation and admit I am not to the point of total acceptance, but your post helped me to see the side of "staying in it" and what I can do to make it better for myself (as I don't consider myself or like to be in "victim mentality"). I know he "feels bad" about having ESRD, but I'm not the one who is making him feel bad, that's something he's having to work out for himself. I am HERE and don't throw that against him. I've been trying to work out what's best for me since no one else can/will do that. I do think I've been doing all the "right stuff" since we found this out, and again, your post helped me to see both sides again (staying or leaving) and yes, it IS about the "consequences" (mental, moral, emotional, even financial, other people, regrets, guilt, doing what's right or "what is right", etc.). It's been complicated. It still is; however, your post states how we as the spouse/caretaker can "make the best of it" if we decide to stay in it. The biggest thing for me is about being able to "live with myself", so when I saw you wrote those words, this whole post really hit me spot on. I've tried to get more to a point in my life where I don't care so much "what people think"; however, no matter how hard I've tried, there still is a part of me that does care; i.e., I still think I probably would have at least a bit of a problem taking criticism, negative comments, unwanted advice, comments, etc. from people who wouldn't/couldn't understand, but I also think, at the end, if I deemed it absolutely necessary that I should leave in order to "save myself" mentally/emotionally/psychologically (due to whomever/whatever triggers my clinical depression/panic/anxiety/PTSD symptoms to a bad enough degree to a point where I am becoming dysfunctional or less-to-non functional), then I would have to also be able to tolerate the nay-sayers in any case, in order to save myself from destruction, at the same time not allowing anything/anyone to affect me that badly in the first place (hence, your "suggestions" on how to cope). I know that I will try EVERYTHING I can possibly do FIRST before I would/could be able to (still) think about being able to leave. For us, it's also financial which is another factor altogether, that just complicates the situation even further. But for me, it's more emotional even than the money part because I'm not really a materialistic person, although I realize I must be able to "take care of myself" in my later years (I was 53 on May 15, but at least I'm in good health). But also because of age discrimination and the economy, I feel I don't have much choice either. I am now fighting not feeling STUCK, which is another angle to this situation. I am fighting not feeling as if HE is the one who's "getting everything his way" on this whole situation, whereas I am NOT (or else I would be gone, back to that again). So that is back to where I'm looking at your 7 points and seeing that's what I've been trying to focus on, especially now that he's let up on me from his bad attitude, which allows me to focus more on "how to stay in it". That's why I wrote in the other post to lady pa that if he starts acting nasty again, I will AGAIN want to leave. I'm also looking into whether or not that's MY issue to deal with (not being able to tolerate nastiness from a sick person or whether I should take nastiness from a sick person or a well person, doesn't matter, the point being I don't want to take crap off ANYONE anymore in my life, no matter what the reason is). So, this is a long, drawn out process for me, which I guess it is for anyone who actually cares enough to even debate on whether to stay or not. I say we are caring people already and that it shouldn't make us BAD for wanting to leave, because if we didn't care, we would have just already left, and not even debated about it. If I just jumped up and did what I wanted, I would've just left and got out of it already or would've already made up my mind and just done it or made plans on how to do it seriously. For me this is venting about all the ways I feel and trying to sort out what's best for me, since he has already GOT what's best for him, which is that he has 100% treatment that I got worked out for him, he gets to stay in USA and live where he wants, and with a wife who looks after him very well and supports him. Me? I'm trying to find my way in all this. Thank you for your post. I am currently in that frame of mind, trying to focus on the positive because I'm "still in this". I still can't say whether or not I have totally decided to stay forever-- I just can't seem to get to that point right now, but I will take my time and I will wait and see and give myself (and him) time to adjust more and see how things go. Maybe this is a "commitment" issue for me, I'm not sure. I'm trying to find out what issues in this situation are MINE to work on as well (I don't focus on his, I have enough dealing with myself). I meet my responsibilities, I help him, I do everything I can. I don't deny or run. I'm here whether I like it or not. Your points help me to see a better side of things while I'm IN this. I wonder if I will ever get to the point where I can 100% accept that I'm in this "until the end". I have a problem with not "being in love with him", and I'm not trying to "wish myself into it". I try to stay in REALITY. I KNOW things will never be the same again and I can accept that part of it. I guess there's more for me to accept (or not?) Maybe I don't want to accept it? It's hard for me to accept that I will have to deal with him/this for the rest of my life when it's not what I wanted at all (of course no one wants this). I ask myself SO many questions. I wonder if this "is it" for me, if this is "my lot in life", so I better just get used to it and get on with it and accept it. I think ACCEPTANCE seems to be a key word for me and I guess I'm just not ready to accept that THIS is going to be my life from here on out. I'm good at adjusting and "making the most of things"-- I had to do that my entire life, I guess I just got tired and burned out from doing it.
Thank you for sharing your experience,
New Nan, Texas
This Comment
My husband and I just had our ten year wedding ann. I have to say it was not a very happy day for me. My husband has renal faliure and pretty much has gave up and keeps to himself. My family wants me to leave they say I'm to young to live my life this way(30years). I just feel so guilty even thinking about leaving him. I love him and care for him and his well being but,I'm just not in love with him any more. We are not romaticly involved and haven't been for some time. We don't even sleep together anymore. My days are always the same I work full time he doesnt work at all. We never go out or do anything together he is always on the computer playing.When he isnt in treament he stays in his office he even sleeps in there most the time. I have the weight of all the responsabilty the bills,house work caring for him and our pets and myself if there is time.
April 10, 2009 - 2:00pmI sit by myself most days while he sleeps or is on his game. I just am lost as what to do. I want to have fun and hang out with friends I want to have a life and a family but, I'm stuck in this depressing life with no easy answer as to what I should do stay and care for him or leave and go for my dreams. I feel there is not right answer and no matter what I do I will have regrets for the rest of my life.
This Comment
I am going through this as well. My husband has been diagnosed with End Stage Renal Disease (ESRD is about kidney failure and having to be on dialysis for the rest of his life or else die within a short time, so basically a "terminal illness" which "leads to death" as Social Security calls it! I have found out in a very short period of time (after I got him through all crisis and emergencies and arranged for his ongoing dialysis treatments 3 times a week), that I do not feel I can cope with this situation. He is NOT the person I married. I know it's "about the disease", but I do not enjoy being made to suffer by him (which he admits). This feels mean, cruel, wicket, and maybe even evil to me what he is "doing" to me, even if it's just because he's angry that he's got ESRD. He told me he feels "stupid" because he KNEW he had a kidney disease when we married and even though the "told me about it" and says he "didn't know it would come to this", I still feel he "knew MORE than I did" and I still NOW feel (and agree with him and his family) that he should've taken more responsibility for HIMSELF and took care of himself and maybe NOT considered getting remarried (to me, which was 3 and half years ago). We BOTH decided it was the right thing to do for us, to "start a new life", but looking back, I do not believe I knew ENOUGH about what I was "getting myself in for". He would probably say that I knew, but I'm saying I didn't know enough to be able to make the best, qualified decision about marrying him, because I don't think I would have (and I personally think he knows that). I almost feel "tricked", but not completely saying I was, but I still say he knew more than me and he also knew it would be bad for him not to follow his care routine and it was his choice to not do so, so now here we BOTH are. He knows it's causing me to be very badly triggered with my depression/anxiety/PTSD from which I've suffered for most of my life and especially after I had lost my 20 year old son to a van accident on his way to work in 2002 and have had a very hard life on grief processes due to my son's death, also due to bad childhood, etc. HE knew ALL about me and also that I have been in recovery program for MANY years and dealth with MY issues. He, however, has NOT (but I thought he had, until this sickness came up). There had already been decline in intimacy before he was diagnosed, but I blew over it because I knew he "wasn't feeling good" in general and that he was working fulltime (he has now lost his job due to ESRD). I realize this is all about his anger at ESRD and his ego, etc. as a man; however, I do not feel I wish to put up with this from him (bad attitude), as well as I feel I already had way TOO MUCH stress, horrible things, traumas, crisis, happened to me in my life already at 52 years. He is sometimes civil in attitude, but I never know when he will be a wicked jerk next. He knows he is better off and in BEST situation to stay married to ME, but the thing is, I DO NOT FEEL THE SAME, we are NOT on the same page anymore. This is first time we have disagreed in 3 and half years on our marriage. He is not coping well and I do not feel I will be able to cope much longer, but also I DO NOT WANT TO LEARN TO COPE AT ALL ANYWAY! I am not interesting in any longer suffering in misery for the rest of my life. The disease has ruined things altogether. I am not mad at him for being ill even if he didn't take care of himself so much as I just do not want to "go through this" for the rest of my life, never knowing if we can pay bills, his bad attitude coming and going and me not expecting him to "change" since I know things will NEVER be the same again, nor "normal". I never got to have a "normal" life and I do want that before I die in my gaining age of years. I have MUCH stress in my life now and I do not see the point of even WHAT this "marriage" is anymore anyway? What are we together for if except for me to "be there" for him when there is NO WAY that I will ever "get my needs met" in ANY way whatsoever any longer from my spouse. This situation is ONLY good/best for him, not for me, in my opinion. I always went along with everyone else before in my life regardless of me, what I wanted or not, how I felt/thought or not, now I just don't want to be that way or have that sort of life anymore. This was not why I got married and he nor our life will ever be the same again. I realize this is grief process. I do not deny or run (although I want to). But I do want to be REAL and TRUE. Since he knows he's causing me suffering and he stays anyway because he is taking care of his own needs, then it only makes sense to me to take care of my own needs as well. Again, what is point of marriage if both people have to be autonomous? Is it only for both to have a roof and money? It's certainly not for intimacy or for counting on the spouse anymore. Is it for companionship? What is a companionship/friendship if I never know what he is going to do next or how things are going to get paid for or work out or anything else really? I've asked myself "am I the horrible person" question until I feel myself completely worn out, stressed, and almost going out of my mind. He is driving me mad, this situation. Absolutely I feel myself going toward the edge SO many times that I feel I will have ANOTHER nervous breakdown, just as I did 12 years ago. This scares me somewhat. My daughter is very worried about me and so are a couple of my friends who know what all I've been through in life with horrible things happening (not all MY fault, such as my son's death). I learned a new way of thinking and life for myself and I made that, but now I feel I made ANOTHER mistake when I married my husband now, even though I felt I was doing right at the time. I think if I had known I would be abused by his son and daughter-in-law when we first got married and also that he had this bad of stage of kidney disease, that I wouldn't probably have married him. I do feel he is at least partially responsible for that. I also feel he is responsible for not taking care of himself. I also feel he is responsible for staying with me now because it's best for HIM but not for me, although he says he wants to work small jobs to pay off the debt I now have due to having incurred that debt since I got married to him because he couldn't do entirely what he said he would do and I had to take on debt to make sure we had what we needed as I couldn't find a job for a couple years. Now I am in very hard position to quickly get a job enough to pay for at least all my bills so I can have a car to drive to a job I hope someone gives me! I don't know how things will go with him for working small jobs and that is very hard to live with, the not knowing. I can live with it somewhat, but not to where I completely get demolished in mind, body, spirit, finances, etc. He has put me in horrible position and life and I hope it will be over with soon, this position I'm in. I don't know how, when, what, but I do hope and pray SOMETHING happens soon to change this situation, as I can't do anything about it at the moment because I have to at least find job first. Meantime, I live in hell and trying to make the most of it and I am NOT rude, ugly, mean, disrespectful, or anything else negative to my husband. I am a nice person and I intend on staying that way. He, I don't know, but I don't like who he is now and I told him this nicely and he denies it completely. He refuses to get any help at all for himself. I am trying to help myself by staying with recovery and support group, journaling, talking with a couple friends, looking for work for myself, etc. I feel I need out of this, but I don't know if/when/how that's going to happen or not. I hope I will be OK, I'm trying and doing my best each day. I feel myself in not good shape at all and I think this is about his mental attitude since he is on treatments, taking his meds, and following his diet properly now (even though he has been very angry and nasty about it). I understand that, but still, how much can I cope with? Is this some sort of "test"? Is this my "payment" for marrying him (making a mistake?) Am I bad person for not wanting this life? Am I bad because I am NOT 'in love' with him? I feel I am just biding my time until I can (hopefully) get out, to be perfectly honest. I don't know how that is going to happen at all. I also don't know how much longer I can go on this way. I feel him very mean now. I feel triggered to being nervous about/around him with his attitude. I also remind myself to not be intimidated by him either. We come from different countries and he is ONLY here in USA because of ME and he does NOT want to go back to Great Britain because he knows he's got better life here in USA (cost of living) and that he would take his double-loss if he went back and his family will not "support" him in any way I don't think, and neither does he (they don't want him, they are happy for me to have him on my hands!) His first wife left him when he had Guillame-Barre' Syndrome which he recovered from and when he told HER he had kidney disease she left him, then he met ME and I just feel he "diminished" it or somehow "let me believe" but not to the degree that if I said that to him now, he would say, "yes, but you DID know I have had kidney disease", but somehow this just doesn't feel exactly right to me. I have learned to "trust myself" and now I feel HE is "being selfish". I really do. I know he has to NOW "take care of himself" and "try to get back to some normalcy", BUT how all this is affecting ME and I don't think he is all too much considering about how I feel much at all (because he doesn't think he can afford to financially/emotionally/physically/geographically?!) This is a very hard and complicated situation for me indeed. There are SO many angles to it and layers and areas. It is very much driving me around the twist in my mind trying to keep it all straight. I JUST WANT AND NEED SOME RELIEF! This has been only 3 months, but feels like 3 years already. I can hardly see myself in this for 3 years more as I already had 3 years until now being married to him, but now this. It's horrible, I can tell anyone that much.
April 8, 2009 - 10:32amThis Comment
I must admit that your story really made me think. I am your age and my husband is currently going through tests to see if he has MS. You never know how people are going to handle being sick, and it is scary to think I could be in the same situation. If I am in your same situation one day, I don't know that I would know what to do either.
February 10, 2009 - 9:55amThis Comment
I read your story and you are me we are the same age. I married my husband knowing that he had MS. I thought we would be the ones that would not really be affect by MS, reading your story is the same, over the years I had to give up the man I loved, say good bye to a life that I wanted. You are right when you say the physical limitations are one thing the mental emotional changes are the hard ones. As a spouse a friend a wife, mom or dad we cannot change the course of the illness we cannot be responsible for what the disease has taken away. You need to do what is the best for you. We are small group of married people who have lived hell, who have had people pass judgment, give advice (me included) but it is one thing to look at a road map it is another to navigate that space.
February 9, 2009 - 8:16pmI know for my self if I stayed with him the illness would have consumed me as well. It has been hard I feel guilt shame I feel horrible for him, but staying with him would not change the course of the disease. I always thought I could make his happiness but I can’t, I can only make mine. So my advice is this you need to think about your self and what you want, there is no right or wrong good bad moral immoral sometimes to save the things that are most precious we need to let go, love dose not last forever but bitterness and resentment does. Do what feels right to you be truthful to your self and that can never be wrong. You make the situation work for you what ever that means you need to live, you need to live in order to be there for your husband in whatever capacity that is married or unmarried, you owe it to your self to your husband to live the life that you are given, you can’t live for his.
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