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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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EmpowHER Guest
Anonymous

Well here's a opposite to all that. I have a chronic incurable disease which belongs in the MDA family. There is no know cure or medication to help it. I don't let it stop me though. I'm active, work, great attitude and fun to be around. Nobody ever hears me complain about my situation. It's called acceptance and I live life fully with limitation.
Now my point. My significant other of 13 years, who promised to care for me forever just ended our relationship. When we were together we laughed, enjoyed each other, great sex and did things that were within my limitations. We always talked about when the day comes she will need to take breaks and let one of my kids fill in so she can take care of herself. She jumped the gun and said she needs to take of herself NOW! She was too busy taking care of me. Now the extent of my care today , July 1, 2016 is: let put my hand on your shoulder as we walk for stability, put on my clean bed sheets, and make sure I get into the car without falling. That's it! I cook, grocery shop and run around for and with her. So I guess maybe she did me a favor now rather than when I'm really disabled. But I'm really disappointed.

July 1, 2016 - 2:24pm
EmpowHER Guest
Anonymous

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
Anonymous (reply to Anonymous)

I can relate to you so well. My husband has chronic back pain and has been addicted to pain pills. He is on Methedone and that makes him sleep all the time. He is moody and he over reacts to most situations. He tries to make me feel guilty if I want to travel to see family. I don't give in. I have to have some life. He will purposely schedule procedures or doctor appointments to make me stay home. I go anyway. His insurance will pay to have caregivers come to the house to help.
I am sorry for him and anyone who has a disability but I don't have to sacrifice my happiness to be a good person. Go see your kids. Don't be mean about it but go anyway.
I know what you're going through
Taylor

July 15, 2016 - 9:33am
EmpowHER Guest
Anonymous

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
Anonymous

So much for in sickness or in health...

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

Anonymous: n sickness and in health is my daily mantra but it is a constant day to day grind that is wearing me down and has been for the past 6 years. I have my own health issues, work full time, act as transport/advocate and appointment coordinator for all of my husband's doctor appointments. I handle all the finances, shop every week. You get the idea. I'm tired and burnt out. So please don't throw that at sickness and in health mantra. I'm living it every day as is everyone else in this forum. I'm set to retire in 16 months and hope I can continue the pace.

July 12, 2016 - 8:33pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Amen to that. Know one knows what we go though. Closed minded people that judge should leave this thread.

August 12, 2016 - 1:40am
(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
EmpowHER Guest
Anonymous (reply to Mswife)

I identity with you. "Soul sucking dispute" about sums it up for me. I am very compassionate and I always try to see things from his point of view but I don't deserve the abuse he dishes out no matter what his circumstances. I have a five year old son with him and I stay for my son`s sake.
Sincerely,
Taylor

July 15, 2016 - 9:56am
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