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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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Hey anon, wanted to check in to see how you were doing. Are there resources or organizations that we can work with to assist you? How are the sessions going with your counselor? And how has your husband been behaving for the past month? Thanks so much for keeping us up on everything. I look forward to hearing back from you.
October 13, 2009 - 3:41pmThis Comment
I'm back. So, I am the young lady who first posted the question that started all of these conversations...Things have not improved in my situation, if anything they have worsened. The emotional abuse has continued and I have finally put my foot down. I left him for a weekend (with my little boy), the only reason that I returned is to work on gathering all of the financial information and because he suddenly was under the impression that he would keep our son for 3-4 nights straight per week. I have met with an attorney, I will be paying him alimony for most likely 3 years to a tune of almost $1000 per month. That will hurt, but I can do it. I never wanted him to suffer anyhow or not be able to afford to survive on his own. I asked him to leave for a separation and he refused. If I am paying him alimony and he is receiving disability, I think that he may be able to afford the house on his own, which means that I will have to find a new home for me and my son. It's so funny though because he HATES everything about this house and tells me almost daily. Why in the world would he want to stay? Makes no sense, except to make it more difficult for me. We can stay with my parents, which will be an inconvenience, but we can. I've continued my sessions with my counselor. I'm working on my feelings of guilt. Of course, since I left he's been on his best behavior and is using terms of endearment when talking to me, but this is nothing new. This is how it works...he snaps at me, screams at me, is passive aggressive, is paranoid when I leave the house, so I can't...then eventually I get pissed and let him know it, so then he kisses my butt for awhile, I walk on eggshells until the next round. This has been going on for years. I don't think that leaving and filing for divorce will be easy, but I need peace in my life and in my son's. I fear that the longer I stay, the more my son will think that it's appropriate to speak to me in the same way and later in life will treat his girlfriend/wife the same. I have to do what is right for me and my son.
September 13, 2009 - 3:21amThis Comment
My husband has MS and was diagnosed in 2008 in his early 40s. I am late 30s. It was a sizeable attack that took him down in one swoop from working and playing sports to using a walker and wheelchair and being unemployable.
We have no children and have been together for 19 years.
The marriage has been vanilla and basically sucked all these years. It's non-violent... it's non-everything. We are like roommates with comingled finances. But he has always looked down on me and corrected everything I did. I can't drive the car to his liking, I can't cook to his liking, just everything I do is "wrong" or requires some correction. He blames me for not telling him about things we have to do... even though I do tell him the things. He forgets. I thought it was my fault. Maybe I did forget... maybe I am incompetent. Very depressed and started trying to figure out why I was so terrible.
In 2004 I packed my stuff and left. It was wonderful living so many days in a row where no one cut me down about everything I did. It was like the weight of the world off my shoulders. But of course about 6 months into it he got crazy and started stalking me and badgering me and guilting me until I finally caved and moved back in under duress. I secretly started therapy and after a year the therapist detected that my husband had Borderline Personality Disorder. I studied up on it quickly and found out she was dead on.
So I hung around figuring I can up and leave whenever something better comes along because now I can just ignore him. I had all the time in the world! People with BPD they don't remember being ignored or abused. In fact, it makes them be nicer. I don't abuse, I let him criticize me ruthlessly, and it just rolls off. But as the years pass, it gets old and I am starting to snap back.
So fast forward to 2008 and he gets hit with MS and it knocks him on his ass. The night he called and told me the diagnosis, I started crying... not because I was worried for him, but because I realized I had really screwed up and now I would be stuck here forever. My life was over. Then I felt selfish and ashamed of myself for having that internal reaction. I'm not a cold cold person, it just was a wake up call to me that this marriage situation was a bigger deal to me than I admitted to myself. Thinking I could just stroll along and leave whenever... that attitude blew up in my face.
I care for him and empathize and make sure his needs are met. I do all my caretaker duties and give him anything he wants and asks for because his condition is terribly painful for him. He has to give himself shots, takes like 30 pills a day, is devestated that he cannot run or play sports anymore. I would never want to have MS. It's a dreadful life-robbing disease once it gets to the point that it affects your mobility.
And so now I have a depressed, cranky, non-working, spouse with MS who still has Borderline and the combination is just ridiculous. His relatives come around now and they are finally confiding to me that he is impossible to deal with because he does the same stuff to them and they don't appreciate it. Lucky for them that it is not their job to live here.
So I am 18 months into the MS situation and starting to look around at whether I can really suck it up for the next 20-30 years. I work FT, I have to tend to the pets, and he won't do any housework. I have to worry about maintaning health insurance for the next 2 years until Medicare kicks in and so that limits my choices in life. So I am becoming angry and bitter and don't like it.
I have friends and support. I'm having more trouble dealing with the relationship issues that were there before the diagnosis. But now with the MS diagnosis and debilitations, I have guilt that he will never get another woman to love him, given his bag of hammers. That is the only thing I feel guilty about. His family gets it now that they have been around him more lately so I think I could survive the bad press of being the woman who abandoned the sick husband.
He would be happier if someone better came along who bought into his crap, but who will put up with an advancing case of MS and BPD disorders? It is intolerable for me, but I don't leave. I wish we could just be friends since that is all we are anyway... except I am trapped under the same roof and don't have permission to meet someone else and try again for a better relationship.
If I can muster the sense to move on, I already know that I will have to pay him alimony and provide his health coverage until Medicare kicks in, even though he gets a sizeable disability check and he will receive a large inheritance from each of his parents when that day comes. I have a FT job, but on furloughs so it will leave very little for me to live on while he has the house, cars, a disability check, his lump-sum award from SS, and an alimony check from me... but I would pay it all out in a heartbeat to wake up tomorrow and know that I can be happy.
So I suspect I may find myself in the same place as Anon, trying to put up the good fight until one day I decide I deserve a good life that is persecution-free in my own home. Its the only way I will be able to find out what is worse: waking up in 20 years realizing I wasted my life caring for someone who was mean to me, or waking up in 20 years feeling guilty that I wasn't there for him and that I got to have a good life.
October 17, 2009 - 7:40pmThis Comment
My mother has borderline personality disorder. For years, I, too would just ignore her. Somehow taking her weekly calls and just listening to her be miserable was a good way of keeping the status quo. However, no more. A recent visit made me realize how unhealthy her even being in my life at this point was for me and my family. She justifies everything and nothing is EVER her fault. She will never get better. Borderline is one of the hardest disorders to treat because people with is can rarely even address that they have an issue. I am just tired of it. It's not easy, because this person is my mother. But she doesn't treat me or my family the way a mother should. Your husband is not treating you the way a husband should, either. You need to do what you need to do to make yourself happy.
October 19, 2009 - 9:52amThis Comment
Well said.
His relatives do get to enjoy the short visits with him or seeing him on holidays, but I can tell they are glad not to have to deal with him all the time. Like I said in the earlier post, his relatives are finally showing their hands... that they knew he was messed up before I ever knew him and they just didn't want to say anything to me.
I understand their positions. It's hard for them to put up with him, and I have to believe it is super difficult with a mother in that condition. My mother is a piece of work herself ... not borderline... but maybe a step below Antisocial Personality Disorder.
I am grateful not to have such terrible personality disorders myself. I'm just the silly girl that feeds into them out of habit. :)
October 25, 2009 - 12:37amThis Comment
I read your post and can completely relate. I am ANON and have been struggling with alot of the same things that you are for several years. I recently went to a book store and found a book that you might find helpful too. It's by Beth Wilson and the title is "He's just no good for you" and is a guide to getting out of a destructive relationship. It doesn't only speak about leaving, but really helped me to put things in perspective and gave me some insight about emotional abuse. It's not a "hard" read and not boring which was surprising to me as I really am not that fond of self help books. I have been conflicted about leaving because of such horrible guilt, but I think that I am finally getting past that and know that my life is important too. I tend to feel more guilt when I see him struggling to walk, losing his balance or having difficulty getting to a bathroom quickly enough. I now feel though that I deserve to be treated well, it shouldn't be so hard to be nice to me! Not sure where you are from, but it sure would be nice to get a coffee sometime and talk with someone who completely gets it.
October 18, 2009 - 4:24amThis Comment
I am in Southern California.
My parents were abusive to each other and us kids which pretty much set me up to hook up with this kind of person... the Borderline Personality is just ridiculous. Its virtually untreatable and he doesn't know he has it anyway. Even if I told him, he wouldn't believe it and it would ratchet up his nutty-ness.
Let me know where you are from and maybe we can figure out how to connect offline.
October 25, 2009 - 12:31amThis Comment
I'm in the Detroit, Michigan area. Hmmm....not sure how to connect offline. Any ideas? The telephone doesn't really work for me as the walls have ears. Between him and the four year old I may be able to speak for minutes before getting interrupted.
October 25, 2009 - 6:23amThis Comment
email me at [email protected] ... it is a dummy email address I maintain. And then I will email you back from my real email account.
October 27, 2009 - 12:03amThis Comment
Anon,
Thank you for getting back to us. Your original post has affected so many people, as you can see, and I often wondered how you were doing.
I think you are thoughtful, brave and smart. You clearly have worked through this in many complicated ways, step by step, and it has led you here. You are caring for your son and yourself, and that's really the bottom line. I hope that you don't give in to the "guilt" feelings that you speak of, because there's nothing that can be gained by that.
I heard a psychologist one time say that we misuse "guilt" in our lives. He said that guilt, actually, has to do with Committing A Crime. We are guilty when we INTENDED to do something wrong. Not when we are trying hard to do something right.
I hope that you have found calm and peace in your decision (between the chaos that the new decision has certainly brought you, what with the moving and him pulling on your emotions every time you turn around). Please breathe, have confidence in your decision, and know that you are doing exactly what you must do. I hope we hear from you again soon. All the best.
October 14, 2009 - 8:14amThis Comment