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

By Michelle King Robson 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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EmpowHER Guest

I am 67 years old. I have a husband who has cronic back pain for the last 30 years Because of that, he is a drug addict and has been to a few drug rehab facilities. I don't doubt he has pain. But I've been dealing with this issue for so long already. Of course, he's retired. but I am still working part time 2 days a week, 3 hours a day. Nothing to live on, but just enough to add just a little extra. At this stage of my life I am not able to get a full time job. I don't have ANY relatives left. I'm an only child (so is my husband). I do have 2 grown children one live several states away and has his own life and career, The other once, although just a few cities away, has her own daughter and life. If I were to leave, there's no place for me to go to, no job to substain me, and I loose all my medical insurance.
In a week, I'm going up to visit my son and my daughter and her family are coming with me. Everything has been fine up until now. Because I didn't buy him a gallon of ice cream when I went shopping, and instead I through I would surprise him with a flavor he raved about. Well, he just went blastic. Yelling, screaming, threatening about how he wanted a GALLON of CHOCOLATE ice cream. We haven't been talking since yesterday, and now he acting like he's on death's doorway. He did something of the same last year exactly a week before I went up to visit my son. That time he was able to be admitted to the hospital and I was able to get him into a short term rehab/nursing facility for the 2 weeks I would not be home. This year, I doubt he'll be admitted into the hospital. He can't be left alone for 2 weeks, (he can't drive and I'll have the car)
Do I miss my time/vacation? What can I do about him. Where can I take/put him for 2 weeks --- That's my main question.

June 11, 2016 - 8:27pm
EmpowHER Guest

I feel like we are married to the same person! I resolved to leave my marriage four years ago, after our oldest child graduated H.S. I had been married for 21 years to someone who once was goofy, fun-loving, and kind. We had a great sex life. That all changed about 15 years into our marriage. I married him when I was 19 and he 26. I think we just grew apart instead of closer together. We had not been intimate in over five years. Before I had my chance to escape, my husband suffered a cerebral hemorrhage and spent 17 days in the Neuro ICU. During that time he had numerous brain scans where they discovered he also had MS. Since that traumatic brain injury, he has not recovered mobility, has stopped working and filed for disability. He turned into a mean-spirited person. The only things that come out of his mouth are lies. He put on over 100 lbs. He resents our children (for their youth? for their agility? for my love?) and is nearly abusive to my elderly disabled mother (dementia, COPD, PAH) who lives in our home.
I've begun cutting myself to ease my own pain, disappointment, and despair of being trapped in an unloving, one-sided marriage. I'm only 45 years old now, we just had our 25th wedding anniversary, and I hate waking up most mornings. I feel trapped. He acts like an angel around others, including people in our Church, and never says a negative word about me. If I were to leave him, I would be labeled a bi@#h and would lose what few friends I have. The only ones that would support me would be my two older children, who see their father for what he has become.

June 11, 2016 - 5:39pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I totally understand. I DID leave for 6 weeks. His illness has exacerbated his bad points. I'm invisible. I'm 52 and sick of this shit. His family and my family went BALLISTIC when I left though I told them I just needed a break. Why are WE the bad people????? I vowed for sickness and in health but not being ignored, snapped at, etc. It's ridiculous. And yes, how do you leave a sick spouse? I'm still working on that. He can still work. I work. I'm not putting up with it much longer. I understand being in pain. I'm a hospice nurse but I don't understand the ugly behavior. I really don't. I AM INVISIBLE to him.

June 23, 2016 - 6:47pm
EmpowHER Guest

So much for in sickness or in health...

June 6, 2016 - 12:46pm
Mswife (reply to Anonymous)

I'm so glad that you haven't felt the soul sucking despair of caring for a spouse who uses you for an emotional and punching bag. My husband had MS. I fantasize daily about my freedom, but know that leaving him will place an undo burden on my teenage children. So, I stay. And am mistreated, disregarded, used, manipulated, and exhausted. I've been caring for him for half of my life.

June 18, 2016 - 6:42pm
Alohakam (reply to Anonymous)

My husband and I are in our 60s, but we have only been marred for 18 months. The problem is that he's nothing like the man I thought I married. He has anaxity and depression issues. And we are always broke. When we first met he had just retired and I was unemployed but I owned my house and he didn't. He was in massive dept but he did a lone to pay off his. But now mine bills have been maxed out. I had to credit cards bill before. I fell like I am not in a relationship I wanted but now I'm retired and in dept and couldn't survive with out his income. I fell like a kept women. But I can't talk to him about it, he just says he's sick and I can't ask him to stop smoking , or stop his marajuina use things he promised me. I do love him but I feel like he's breaking me. What can I do

June 11, 2016 - 9:37pm
EmpowHER Guest

I severely herniated my back in January, 2016. After a week of "manning up", I had to go to the emergency room in an ambulance because my wife "couldn't" leave work to help me. She showed up at the er eventually and made a show of being the sweet wife. I returned home and then begin the ordeal. Back surgery was required, which resulted in 6 weeks restriction on bending, lifting and twisting. During the recovery, I never felt right and couldn't walk properly. I turned out that I had reherniated and needed a second surgery, immediately. However, before that could happen, I was struck with diverticiulitis, which laid me out for 2 weeks (after "manning up" for a week and only going to the doctor when I was about to pass out). So I had a second surgery, and another 6 weeks recovery. The second time, I was very afraid of doing anything to re-herniate, so I stopped "manning up" and focused on my recovery.

My wife, for want of a better description, has been terrible the whole time. Ranging from accusations of faking it, to verbal abuse and threats to leave the marriage. I am still not 100% and sadly, am suffering another bout of diverticulitis, which is almost worse than the back.

She has not been supportive at all. She sees me as selfish and demanding when I ask for help. She gets angry if I ask the kids to help and resentful if she does anything. Other than at the ER or OR, when others are watching, she has not so much as held my hand or wiped my brow. Couldn't even hang with me for one full day after surgery, had to arrange "errands" for herself.

I feel isolated, abused, abandoned and unloved. She makes joke about it, "Nurse Ratched" and what not. But it's not funny. I know it's been a long haul and that I will get better, but this does not bode well for our future and old age.

For the record, before this I had never been sick except for broken bones, flu, that sort of thing. I have stuck by her and supported her through 3 pregnancies and 2 surgeries and 20 years of chronic back and neck pain. I made sure to understand what was going on with her, went with her to appointments, comforted her and waited on her hand and foot when she needed it.

When it was my turn? I got nothing but resentment. And here's the kicker. While I am the primary breadwinner, prior to the last 6 months, I was also the primary caregiver due to my flexible work schedule. I was the one to take the kids to every appointment. I cooked dinner every night and did the majority of the shopping. I arranged or performed all the house repairs, remodels, maids and everything else.

When it's her turn? I had to up the maid to once a week to keep her sanity. Now that she is doing the cooking and running kids around, suddenly "she does everything and I do nothing and never did."

I really thought when she had to do it herself that she would appreciate what I did. I was wrong.

The kicker was last tuesday night, when the diverticulitis was really bad. I had pulled myself together enough to work, go to PT and celebrate sons birthday, but that was all I could manage, so I went to bed. Lying in bed, literally in a pool of fever sweat, she come back and starts folding clothes on the bed at 9:00 at night (turns all the lights on) and then starts berating me about yard work (which we had an agreement on). I finallly shouted something along the lines of "Enough woman, leave me in peace." And that was it. She threatened to leave, called me selfish, etc.

Cold shoulder now for nearly a week. She was kind enough to offer me mixed nuts whilst I am on a liquid diet, but that's about it.

So, I must say, I am not having much sympathy for the caregivers right now and frankly I am considering divorce, because I can't imagine old age with someone like this, or like some of the "caregivers" I see commenting here. What part of "In sickness and in health" do ya'll not get?

June 6, 2016 - 7:21am
Lorajo (reply to Anonymous)

Thank you for speaking for US. This site has made me feel like I don't deserve to even have a spouse

June 12, 2016 - 10:53pm
Lorajo (reply to Anonymous)

Thank you for speaking for US. This site has made me feel like I don't deserve to even have a spouse

June 12, 2016 - 10:50pm
EmpowHER Guest

I'm 50 years old. Have been married 23 years this August. I'm the one that is sick. I have had severe GI issues. Part of my colon taken out. Have pain daily since. I also have had multiple other issues. All this created me into a very anxious person. I was once so vibrant, running around. Doing and Doing. For my family (2 children and a husdand). I loved being helpful. Now fast forward I have been sick for 5 years. My husband more often has to grocery shop. Takes me to doctors. He has been very verbal about how unhappy he is. My kids son 17 and daughter 27 try to cheer me up. My husband has gotten so angry, the kids can't stand to see it. My question is....I feel so scared for my future. Also watching my husband slip away from me is so hard. Yesterday at the er again. Stomach pain. We waited hours. I got an allergic reaction to some meds. He gave me a look I have never seen. He said I just want to go home. This is so disappointing . Is he going to leave or are we both just torching each other. I love him so much and wish it was different.

May 28, 2016 - 8:52am
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