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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)

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
Anonymous (reply to Alohakam)

First of all yo

June 27, 2016 - 5:04pm
EmpowHER Guest
Anonymous

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
EmpowHER Guest
Anonymous (reply to Anonymous)

I am truly sorry that you have felt unsupported during your illness and it sounds like you are justified in feeling that way but I am really offended at your "I have no time for caregivers comment and in sickness and in health comment. you sound like you have issues in your marriage that may have been highlighted by your illness but pre date your illness.
I am married to an abusive jerk who enjoys making me feel small. he has a chronic illness and whether you believe me or not I have cared for him and loved him through all his challenges. I left a job I love and family and friends to move to a climate he felt would be better for him. I am alone and isolated. I have sat nights in er and in hospitals I. have researched diets I have done everything I can think of for him and he treats me like a servant.
I left him a month ago.....I guess I am horrible. last year I found a lump in my breast. I went to all my appointments and biopsy alone. I heard the word cancer diagnosed alone....my husband said he didn't have the energy for me. last month I finished my last chemo and rang the all finished Bell in the clinic alone. then I called a lawyer.
lover and marriage and sickness and health is a two way street.
thanks for the judgement. I have enough guilt for giving up. your post made me cry.....thanks

March 12, 2017 - 1:10pm
(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
(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
Anonymous

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
EmpowHER Guest
Anonymous

My husband has been chronically ill for the past 9 years. He had a lot of terrible symtoms, but no doctor has been able to find a diagnosis. We got married about a year ago, and I thought I knew what I was getting myself into. At the time, he was doing fairly well with coping with his symptoms and he had just gotten a new job. I envisioned figuring out ways to make life more comfortable and exciting for him. We had a plan for how we would work around his illness.

3 months into our marriage, he took a huge turn for the worst. He can barely function on his own. I do everything for him - make all his meals, walk him to and from the bathroom, even help him shower. All the while he plays video games to keep his mind off the pain. He isn't working, and I have had to take an extended leave from work to help him. Now it looks like I could lose my job. We can't afford a caretaker and don't have any family or friends who can help so I can go to work.

I am absolutely miserable and keep thinking I made a mistake in marrying him, but then I feel guilty for thinking that. I am only 23 and have completely stopped everything for him. I should be graduating college this year and had just gotten a new promotion at work, but everything has been put on hold to be there for him. I love traveling and have a huge desire to see the world, but now I'm confined to where we live. I can't even eat a normal diet because he has severe food allergies and we can't risk cross-contamination. On top of that, we fight ALL the time because he is in so much pain and i get so scared and depressed. Sometimes I think about how if I just left him, I could go back to work, graduate college, and get out of debt so I can travel the world. But I feel like such a terrible wife for thinking that when I know he is in pain and agony every second of the day. And I don't think he could survive without me.

I get so scared that life will just continue on like this. I feel like I've thrown my life away for him. And yet, I know I love him and need to be there for him as much as I can. I feel so much guilt for being so selfish, yet I resent him for the life we have to live, even though it's not his fault.

I just needed to get this off my chest and maybe get some comfort for feeling this way. He knows I feel this way, because he is really good at reading me, but I try so hard to hide it so he won't be so hurt.

May 14, 2016 - 8:02pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I'm going to be straightforward, here, and tell you that you need to get out. You are YOUNG, and you cannot compromise your entire life. You and your dreams are important. Not to say that you shouldn't care about your husband and help when you can, but when you look at the long life you have ahead of you...I think the best answer is to realize you made a mistake (which we all make) and do what you feel is best for you.

August 8, 2016 - 2:01pm
EmpowHER Guest
Anonymous

I NEED HELP!!!

I have a 2 week old son. My wife has just been diagnosed with stage 4 cancer. I am off work now but soon I will have to return to work. It's killing me thinking that I have to go back to work when our time together is so limited. Any advise for coping?

March 11, 2016 - 7:59pm
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