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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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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

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
Susan Cody HERWriter Guide (reply to Anonymous)

Hi Anon

I echo everyone else's sentiments, I am very sorry to hear this.

Please reach out for as much family and community care you can read. Have someone start a GoFundMe page to help pay for childcare and/or health expenses. Spend every second you can with your wife.

Please stay in touch with us.

Best,
Susan

March 22, 2016 - 3:39pm
EmpowHER Guest
Anonymous (reply to Anonymous)

My husband of 40 years was diagnosed with stage 4 bladder cancer 10 months after his doctor refused to do a test I had requested. His diagnosis came only 9 months after my own breast cancer diagnosis surgery, followed by radiation and oral chemo.
Understand you will go through a wide array of emotions, from anger to grieving. Your wife will also experience some varying emotions. If she becomes angry easily, please understand and don't take it personally. It's not you, she will just be angry with her situation. It will be hard, but life is so precious. Hold her close, be sure she still feels like a woman and not a disease. Encourage her to do whatever she wants to do. If she wants to talk, listen. When she goes to the doctor, go with her or have someone go who can be her advocate.
I lost my darling husband this past October after 3 years of treatments. I read a saying the other day that stated the worse grieving is for the person who is still alive. It's very true. I felt I was in the first stage of grief for the entire 3 years. Pick one close friend you can trust to vent your feelings. To your wife, family and the rest of the world, you tell them you are taking it one day at a time. Love your family to the best of your ability, you would expect her to do it for you if the conditions were reversed. I wish you all the best. You and your family will be in my heart.

March 20, 2016 - 11:35am
Maryann Gromisch RN Guide (reply to Anonymous)

Hello Anonymous,

I am heartbroken to hear this. What type of cancer? What treatment or palliative care have been suggested?

Do you have a strong support system of family and friends? Is it possible for you to take a leave of absence?

You will need much love and support from family, friends and others who are going through a similar situation. Speak with her oncologist about support groups in your community. This experience may be beneficial to both of you. Reach out to your religious community, if you belong to a church, synagogue or mosque.

Will keep you in my prayers,
Maryann

March 14, 2016 - 8:36am
EmpowHER Guest
Anonymous

My mother has MS and has since I was a teenager, so I understand I struggles of living with someone affected by this disease. Most of the people don't seem to know anything about MS and it's long term implications. I have met a few different people with this disease and one thing most have in common are personality changes, if you do any research you will see that it is because of the changes in their brain, it isn't based in depression. Many people have to leave a spouse who has MS because they can even become dangerous because of a lack of impulse control and anger issues. . This woman has to see that in the long run it will be in her best interest to leave.

March 6, 2016 - 7:21am
EmpowHER Guest
Anonymous

I too am 37. In 2012 my Husband of 10 years was diagnosed with Cardiomyopathy with advanced heart failure. Our marriage had become strained leading up to his diagnosis, his moods had changed, he started gaining weight, and his libido had dropped. After the diagnosis he became very depressed and was in denial about his health. I started to resent him a lot. As he got sicker his personality changed more. He was no longer the giant teddy bear I married, he was more like an angry Grizzly. I started to consider divorcing him because he was making the kids and I miserable. The day we found out that he would need major heart surgery to bridge him to transplant I told him I was considering divorce because it was really becoming too much for us. I told him that he had to quit work, get on Social Security, and do what the doctors ask. I expressed to him how his behavior was effecting the rest of us. Some may of thought it was insensitive, but he understood and did his best to change. We stayed together and I saw him through the surgery, rehab, multiple hospital stays, and additional surgeries that led to a 3 month stay in the hospital during the 2015 holidays. I stayed as the surgeries failed, I stayed as multiple organs failed, I stayed until he quietly slipped into a coma on 1/30/2016, and I stayed until he peacefully passed away at 42 years old, from a terrible, incurable brain bleed. The point that I am making is that my husband was my best friend. I loved him with all my heart. I realize now after losing him just 5 short weeks ago, that the only reason that I wanted to leave him was because I did not think that I was strong enough to watch him go through everything that I knew that he was going to go through. I knew from the beginning that he only had a 40% chance of survival and those odds went down every year that he did not receive a new heart. I am so grateful that I was able to spend those last couple of years with my best friend. We had more bad days then good, but I focused all my energy into the good days.

March 4, 2016 - 10:43am
EmpowHER Guest
Anonymous

Hi , I have to laugh at some of these comments .. I know every bodies situation is different so I'm not judging . I was the one who was left after being Dxed with MS because my Ex said she didn't want to be a nurse for me , which she never was . I would have never even thought twice (I don't think) if she was sick and I would have had to take care of her. In fact over 18 years , she never worked and I did take care of her every need off my $300grand plus income. Fast forward 10 years later I'm fine . Just needed a little time and I was kind of a asshole and depressed for awhile back then t. I have a new wife that's much younger , prettier and understanding on my bad days . My ex calls often and leaves messages of how much of a mistake she made . The laughable thing is that the grass wasn't greener for her anyway. She has been recently Dxed with cancer , has to work just to live a shitty existence. I learned a huge lessen from the whole thing and changed the way I trust people or think about marriage . Every body will get sick or need help if you live long enough and sometimes its just a bump in the road . Life is great even at its worst ..

March 2, 2016 - 1:30pm
EmpowHER Guest
Anonymous

He is mean and angry. I think it is time to stop blaming his behavior and treatment of you on his medical problems. Sure, he has medical problems. Sure, you want to be understanding. But he is also a human being. If he is treating you so badly you should not be made to feel guilty because you want to leave. He will survive without you. You can check up on him occasionally. His illness does not automatically make you a victim of abuse, and you do NOT have to feel guilty about not accepting this. Putting a guilt trip on YOU because HE is abusive is the typical domestic violence problem. Blame the victim. But you keep seeing HIM as the victim. Stop blaming this all on his medical problems and expect him to treat you like a human being, or leave him.

March 2, 2016 - 10:07am
EmpowHER Guest
Anonymous

Hello, I am 41 years old and my husband had liver disease. We have been married 16 years today. He was on the liver transplant list for for three years but sick a total of six years. Being married to someone who is very sick isn't easy, especially for the ones who is caring for them. I felt like nothing I did was enough, he always told me how thankful he was to have me, but his ammonia level would go up and he was a total different person, nothing I said eased him, nothing I did helped the situation and once his levels come down it was a totally different environment, he didn't remember anything and to be honest his sickness took over my life. I was always on the computer trying to find ways to cook better for him, trying to find things that would help his health overall, plus worked a full time job and took care of two teenagers. Sometimes I wanted to give up, there were days I didn't know how I was going to find the energy to do what I needed to do. All I could do is pray that god would get me through this. October 9,2015 we received a gift, he received his new liver. Within days the man I married 16 years ago was back, he only stayed in the hospital 6 days, they called him the miracle transplant patient. We still have our ups and downs, its only been three months but I have to remind myself that its only been three months. I guess I thought once he received his new liver our lives would go back the way they were. I've realized that our life will never be back 100 percent but it will be close. Please keep your faith, I know its hard, I know your tired and wanting to give up. I want to let you all know that I will keep each and everyone of you in my thoughts and prayers.

February 11, 2016 - 2:43pm
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