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Living with and possibly leaving a sick spouse - a heartfelt story from a reader looking for advice

By Expert HERWriter January 7, 2009 - 10:17pm
 
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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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(reply to Anonymous)

Like you, I wait for each new 'fail'. For the RA to go for a new joint, or the drug I'm on to stop working. Each New Year I think...whats coming at me this year? Last year tried to kill me. I was your age when I was diagnosed with Rheumatoid arthritis. Now I have Sjrogrens syndrome and Lupus. Oh, and Cogans Syndrome. Yeah for me. I wonder too, if with each new...fail..if he will say "enough".

May 21, 2015 - 5:28pm
EmpowHER Guest
Anonymous

Good morning, so where do I began, first let me say I know exactly where you are coming from. My husband and I have been married 16 years, and Six years ago my husband was dianoised with cirrohsis and now is on the Liver transplant list, has been for almost three years now. A few months after he was excepted on the list he started messaging a friend of ours through facebook, (but in his eyes he didnt do anything because they were text and he never acted on it) It was several months later when I found out about it, a part of my soul died that day and things havent been the same. Im not happy because i walk on eggs shells around him , one minute his mood is great the next hes aggravated. I thought this was the man of my dreams, we were high school sweet hearts, he always made me smile, but now I dont know how I feel, im exhausted, scared, and I am starting to resint him.In stead of being thankful he was one of the few that was put on the list, he is depressed,. As bad as I hate to say it, I think he uses his illness as a crutch.I dont know what to do, please help.

May 20, 2015 - 12:08pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Honey, all I can say is that if you are putting up with all his crap on top of that nonsense then he has the NERVE and EGO in his condition to think that another woman would be interested in him, and is acting like a childish shady player. He really needs to see a psychiatrist, and you need to think about moving on. That is absolutely unforgivable behavior. WOW, he really needs a reality check, and maybe when you're not there doting on him anymore he'll realize what an idiot he is. I highly doubt that other woman is going to come running to his side. I feel for you. See a counselor and get some support please. I respect marriage vows, but I also don't think marriage should be a one sided prison.

May 20, 2015 - 1:17pm
EmpowHER Guest
Anonymous

There are good times and bad times in life. People don't seem to take marital vows very.seriously anymore. Unfortunately, we aren't always put on this earth for personal satisfaction and happiness. One would usually never think of abandoning their children, because they are their flesh, and in marriage God made two people one in mysterious ways through their vows to each other and before God. We are not always promised personal happiness in life. Life is about developing character and fortitude and never giving up and it is often a test of keeping our promised. The real rewards for those who stick.it out are in the next life. Abuse should not be tolerated. I was sick and left by my spouse and he had to bear a lot until after many years he decided to pack it in. I do my best to forgive him. because he was my only love and I recognize it wasn't easy. I must trust God to take care of me and take care of myself the best I can. It has been many years since the divorce and I am finally growing to appreciate the non complications of being unattached. We marry for happiness which is purely selfishness, even relationships are bastions to getting what we can get. There is much tragedy in life, so I try to enjoy the little things. I struggle financially and had to go through cancer alone at age 45. That was rough, but my bible says that God will never leave if forsake me. It's hard on the spouse of an I'll person, but never forget they don't get to leave their lot in life. Love is patient, love is kind, considering, hardly notices when others do it wrong, it bears all things, it is not proud. Love never fails. And we can only have that live through God, who IS love. We all fail at real love, but some hang in and keep trying whatever the cost. I applaud those people because that is the road of suffering. Would I do it? Not in my own strength I'm sure, but it is a decision.

May 20, 2015 - 6:20am
EmpowHER Guest
Anonymous

I have been married for 23 years. I have 3 kids. My husband was diagnosed with ms 4 years ago. Things in our marriage were strained before but he had become more depressed and unhappy and in pain all of the time. I supported him through it all but to protect myself I removed myself emotionally. I was not happy however, I would not have left him. I found out he cheated on me. With someone else with ms he found on the Internet. It meant nothing to him just stress relief. I asked him to leave and now I am devastated. How could he do this to me to our family? I don't know if I can forgive him and even if I can I will never trust him. I know we have no chance unless he gets some help but I just really wanted the man I married back.

May 20, 2015 - 12:50am
(reply to Anonymous)

I wonder if your husband feels less of a man due to his diagnosis and by having sex with someone else with the same illness he felt it was somehow a level playing field.
Not that its an excuse in any way shape and form for his behavior, because it isn't. Your husband needs counseling. He obviously is not happy but I reckon its with himself. I know that feeling. When your own body lets you down there is a massive sense of betrayal....of yourself. I dont know if marriages can survive this - in my experience it takes a lot of work and will. Only you will know if you have enough love left for that. Being sick can be a REASON for bad behavior but it is never, ever, an EXCUSE.

May 20, 2015 - 1:11am
EmpowHER Guest
Anonymous (reply to kiwitoo)

That was very helpful thank you. He doesnt even understand his own behaviir thats why he needs help.

May 20, 2015 - 3:18am
(reply to Anonymous)

Be kind to yourself too. Life is a tough game. xx

May 20, 2015 - 4:09pm
EmpowHER Guest
Anonymous

My husband walked out in 2012 after I had been struggling with the effects of a bad concussion that affected my ability to maintain steady work. He had been drinking heavily and I had always supported him in trying to get help. The last memory I have of him that day was throwing money at me which was demoralizing. I tried to hold it together for awhile because of my 'vows' while we lived apart, but he disappeared for a week in 2013 while I was really sick and I decided that was enough. Last year he left on a trip home to India and just never came back. The day after I discovered he'd cut off his phone, and had been seeing another woman. He just abandoned everything. I have become worse and may have a neurological disease and cannot work at all. I am in my 50's broke having lived off my savings all these years, and it is frightening, frustrating, confusing, and then there is no closure with him unreachable to even divorce. I feel like a hostage to a person who clearly doesn't give a damn about me or my family that treated him with generosity and love. Last year when my finances started to dwindle I really panicked, plus I didn't want to be a burden on my family. My self esteem was down the toilet and I was not getting support from anyone. I started to have ideations of packing it in rather than struggle again as I had all those years as a single parent. I had joined a chronic pain group and was encouraged to get a referral to the Rapid Access Program at the local hospital psychiatric department. I got in to see a counselor and they are helping me to get proper pain medication as the pain is causing so much of my depression, and I have some support. I have been a single parent most of my life but realize that sometimes you can feel just as alone with a partner. I also know in my heart that there is always an answer over ending your life, and when you feel that way you have to reach out for professional help and try to focus on your family, and how it will devastate them. The incidence of suicide in children of suicidal parents is much higher as it sets a pattern just like alcoholism or smoking. When we get so overwhelmed it is that fantasy place we escape to when we just don't know what to do anymore. If being with a partner is making a person that ill then they have to find another way of moving forward that still supports the ill person, but not to the detriment of their own mental health. Abuse is abuse despite where it comes from. Illness is not an excuse for violent behavior. Clearly that person needs counseling and support. Caregivers are not superhuman anymore than the ill. It is impossible in a blog such as this for any of us to fully understand all the fine details of one another's circumstances, any more than we have the right to judge one another. The stress for any of us whether we are the ill one or the supporter is draining and taxing on us physically, mentally , emotionally and spiritually. Family and friends can get burned out too. I really believe the key is to reach out for professional support. It isn't selfish to take care of oneself, and in the long term whatever you decide will have been a rational decision. The whole scenario is sad and not fair but unfortunately it is what has been laid before us. I truly wish all of you the very best and pray that your circumstances will work themselves out. Jean

May 16, 2015 - 4:35am
EmpowHER Guest
Anonymous

My husband is 54 and has peripheral neuropathy. He's a good man, and an amazing father to our sons, ages 6 and 8. I am 42. However, I have found the last 18 months particularly hard as I've fully grasped the effect his illness has had on my, his and our sons' lives. Sometimes it feels like I live with a verbally abusive person - from a tension and atmosphere point of view, not because he's abusive. He's angry and in constant pain. He slams doors, gates, windows, punches walls, countertops and swears, moans and groans. I battle with the atmosphere in our home. He now assists me in my home based business as he cannot work any longer. So we are together a lot. I have become very isolated from almost all my friendships. We have no sex life, and I can't talk to anyone about that, so I have a mask of normalcy while inside I feel trapped and hopeless. I am young and I feel like my life is over. I feel such devastation for my kids. I am chronically depressed, and attempted suicide 9 months ago. Running away, or dying is always an option in the back of my mind. I really appreciate people who talk about this, I have no one to talk to, and feel very alone and angry and misunderstood. Most of all, I feel guilt and shame for having these feelings towards my husband, whom I made marriage vows to 13 years ago.

May 14, 2015 - 10:24am
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