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

By Michelle King Robson Expert HERWriter
 
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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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JMC663

Oh my word this is so close to my situation but the other way around. I have been married to my wife for 12 years and knew at the time of us meeting that she has just been diagnosed with m.s. I was 20 at the time and she was 24, she was wonderful in every way and loved every single bit of me and me the same to her, we had 2 amazing children aged 9 and 5. They and my self have grown up with their mum and my wifes condition getting worse and worse. I had to give up work in 2011 to look after my wife and our children. Her condition now is edging on Primary Progressive, she can no longer care for her self, has incontinence and last week collapsed and is now in hospital as I write this 300 miles from home. I have amazing support from my wifes parents and with the issues of this week have had my family step up to the mark for pretty much the first time. My wife will not be coming out of hospital for the time being because I have made a very selfish decision to insist on funding for 2 permenant carers for her as I have had enough. It has been very hard and I am getting a little upset writing this but I have lost my wife to the illness. She thinks things are ok but they are not, I just need some normality for the first time in 10 years. I am always though toying with the thought that I would love to meet another woman, not for the sexual side of things but for sharing, someone I can walk with and talk with, someone who I can have a laugh with and enjoy life again. My only advise is to be honest with those around you and your self, if it is too tough admit it and tell people what you want for a change, you live only once in this world and there needs to be a balance between stresses and enjoyment in life. I am praying for your situation God Bless you.

April 26, 2015 - 9:11am
EmpowHER Guest
Anonymous

Hi. Been married 22 years to my bride. 4 months into our marriage she got sprayed by a chemical at work. She became a chronic paranoid schizophrenic and life changed for us both very fast. Physically she was poisoned and mentally i didnt know her. I was 23 and lost but fir God. I decided that i made a vow to her and the lord to take care of her, sometimes the only thing tht brought me home was that vow. Its difficult enough being a young man and having no sexual contact but you add on the fact that youre only existance is for someone who hates you, life, and everything about life, and you start dying inside. 21 years later i still am her caretaker, the husband part was gone long ago. She is more a sister, and a sister in christ than a wife. But ive kept tht vow i made and when God takes her home i will be sad and happy because she will be the gal i loved again so long ago.

As for me ive learned that i lost myself and who i was, in the past year i foubd a friend who makes sure i do something for myself once a month and altho i have changed, i am gradually finding joy in life again. Before now i was just waiting for her to pass away so that i could die myself. Dont get so far down that you see no light like i did. Stop and see your worth beyond caretaker. God bless you. Hang in there. One survivor to another

April 26, 2015 - 12:47am
EmpowHER Guest
Anonymous

I married a strong, hard working, thoughtful man. 18 years into our marriage, he had a coma, for reasons no one could find. I sat by his bed day and night, helped him learn to walk again when he came out of it, was his 24 hour care giver. Then he got rear ended by a bus, which landed him back in bed for 3 months. He has sleep apnea, which, because he wont spend the money on a machine, keeps me awake every night, poking him when he stops breathing. He is "sick" all the time with one thing or another , is physically unavailable, says random, very mean things, even to friends, becomes easily angered, is never happy with anything I do or say any more (and makes sure he comments about it). If it is his bike, or something he like,s he has all the energy in the world, even if his frustration levels are non existent. If it is something his family likes..he is "sick", "tired" or "too sore". it has been three years of hell, but I feel guilty for wanting a life, wanting to be able to live, and do things, when I know he is still in pain from the accident

April 25, 2015 - 9:32am
EmpowHER Guest
Anonymous

I left my husband 2 years after his stroke. He's telling everyone that I left him because he had a stroke. That isn't true. I was going to leave him before his stroke but didn't move fast enough. I had a place lined up to live, money in the bank, and was ready to go. THEN he had the stroke (due to not taking care of his health, going off his cholesterol meds cold turkey, being alcoholic, refusing to treat sleep apnea, etc. etc.). For the whole 11 years of marriage, he was abusive. You would never know it because he is personally charming. Mostly his abuse happened where no one could see. This poor excuse for a man had anally raped me, shoved me, shot a gun at me. He struck me, intimidated me, committed many acts of sexual assault other than the rape. He called me terrible names, screamed obscenities over everything. His psychological abuse was well thought out and a daily occurrence. He refused to support me financially and demanded money from me for a home I couldn't afford but he wanted. He manipulated me into giving money to him for his kids college educations, which I 'freely' gave in order to keep the peace. He accused me of running up his credit card when I never had one - it was his daughter who did it. In other words, my life was hell for most of the marriage. Only my close friends saw any of his abuse. Because I was still married to this horrible man when he had the stroke, I became his caregiver through that and other illnesses and surgery. Without me he'd have been in a nursing home. He couldn't have had better care than I gave him. I left when he could again take care of himself. People believe his claim that I left him because he had the stroke and is now handicapped. Believe me, I was totally justified in leaving. TOTALLY. I was in fear for my life through the marriage and during the caregiving and still am. He wants to shoot anything and everything and is even more disturbed than he was before. On top of all the abuse I suffered, I now have the added stress of people thinking I'm the bad guy. I was brought up to be so responsible that I still feel guilt over leaving, but if I hadn't, I could be dead today. I'm just saying, don't ever think you know what is going on in a marriage or why a caregiver might have to leave.

April 16, 2015 - 10:07am
EmpowHER Guest
Anonymous

My wife is leaving me after 5 years together. I developed a severe nerve problem and other autoimmune problems. I love and adore her and she still loves me. Being that she is still young and my life looks bleak I don't begrudge her leaving, I just wish her happiness.

I will have to find my way or die, but I recognize this is my challenge and I don't want it to destroy her as well. Honestly many times I think it has been harder on her than me. She was not in pain but stood by and watched me suffer for years. I have been blessed and think no less of her even of it pains me to think of life without her.
If your life and goals no longer align then do what is best for both of you.
I wish you the best.

April 8, 2015 - 11:04pm
EmpowHER Guest
Anonymous

I stayed with my wife during her 6 year battle with cancer until the day she died. I didn't see the fine print in my marriage agreement that said I could leave at a time like that. I will never have to look back and regret having not done everything I could have. For some of us it's that simple.

April 8, 2015 - 5:34am
EmpowHER Guest
Anonymous

I had struggled with a similar situation with my ex-wife. We were married for 16 years. Four years into the marriage, she suffered an injury to her back and started treatment for chronic back pain. Half way through our marriage, I noticed her deterioration and she became increasingly self-destructive. I held on as long as I could, caring for her and being faithful to my vows. "For better or worse, in sickness and in health" kept me hanging on for a very long time. Unbeknownst to me, I could not see how destructive the relationship became for me or our two children. I found myself obsessing over her self-destructive behaviors and neglecting my own needs to take care of myself and my children. I lost sight of going to the gym, my hobbies, my friends, and other things that made me happy. I was afraid to leave her alone. I began taking on all responsibilities around our home. I began to feel guilty that I wasn't doing enough. Perhaps, if I would try harder it would help her be happy and I would feel loved. The downward spiral occurred slowly over many years. It was subtle, progressive, and was affecting all relationships in my immediate and extended family/friends, our finances, and my children's academics. I didn't notice how bad it had become because I was always putting out the latest fire. I was unable to see the forest through the trees.

In this experience, I have learned that I had to rebuild my confidence in myself to make the appropriate decision for my situation. I did this by working on my relationship with myself. By relearning boundaries, recognizing and no longer enabling destructive behavior, and sticking to ultimatums that I bestowed.

I learned that for those of us surviving situations like this, no one can tell you what is the right thing to do in your situation. Only you can determine that. I was unable to make that determination for years. In my mind, a logical voice wanted something better but a self-deprecating voice in my head kept me locked-in to fight the good fight: rescuing, sacrificing, and being the martyr. I was then able to see that my needs and happiness were important and fulfilling them was not selfish, it was necessary.

I know many people in similar situations that have chosen to stay and many that have chosen to leave. In either case, support groups and counseling are critical components to maintaining the areas of ourselves that help us rise above the anxiety, depression, worry, and self-sacrifice. I have learned that the ones that are most healthy in these situations are strong in mind, body, and spirit. The tools I used to help myself was writing in my journal, regular physical activity, reduction of alcohol consumption, self-help books, getting out for group activities with my kids and other health adults, opening a business, counseling, group therapy, taking classes, staying away from other intimate relationships, and trying new healthy things that made me happy.

As long as your decision is your own and you have YOUR best interest in mind, whatever you chose to do IS the right decision. In my case, I found that once I could see the forest through the trees, the circumstances made make that decision for me.

Good luck. Stay strong. You are a survivor!

April 5, 2015 - 10:46am
EmpowHER Guest
Anonymous

Get out. Get out now. You can sacrifice your life and be controlled by all this nonsense about how you "can't feel this way" - extraordinary! - and how "you're a bad person" or you can ease away and find a life.

The longer you stay the worse you will feel. The longer you stay, the more ill your partner - who has done nothing wrong and is not at fault - will become, and the more drowned in his illness you will become.

My husband has a chronic illness which means that we do nothing, all day long, year after year. I'm the sole earner. He wants to do nothing - though he is physically capable - but if I manage to prise him from the bed I have to pay for everything which means that unless I go somewhere on my own we don't go far.

He's a good, loving man. And I have a life too, one that is small and miserable.

Get out now. Hater's are going to hate, and they're going to tell you that you're a piece of shit because they would like nothing more than to reclaim their life too.

Get as much support as you can for your partner in place. And then go.

April 4, 2015 - 9:48am
EmpowHER Guest
Anonymous

Here is my life. After living together comfortably for 40 years the wife got sick. No more housework, no more sex, lots of running errands. Lots of work. Period. Remember our vows, for better or for worse. Worse has come and we don't bail out boys. Are you bailing out for sex, intimacy, you dam loser, don't bail. Remember your honey, how she loved you all these years. She needs us guys. Don't bull s--t your buddies and feel sorry for your sorry ass. It's time to man up. Practice safe sex boys. That's why the good Lord gave you two hands. Be faithful and stick with your baby till the end. Right to the bitter end. That's keeping the marriage vow till death do us part. If you bail, everyone will cuss you as a miserable two timing assh---e. Don't do it. Keep the girl. She loves you till the end. End of story. Dig it?

April 2, 2015 - 12:03am
EmpowHER Guest
Anonymous

well reading this article I could just not help to want to cry I tune of multiple sclerosis my husband and I have been married 36 years. I got multiple sclerosis in 2009.... I was diagnosed at a very late age thank goodness. I have lost the ability to drive im incontinent I had to leave my job why my husband does everything...... I can see him wearing down. I feel like I've become a burden on everyone. we get along and we love each other he says he's committed to me but I can't help to think he could have a better life without me. he's healthy and is very active and I am NOT......... but if you ever left me I think I probably stop eating and die. but I would feel happy that he would have a new life

March 23, 2015 - 4:16am
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