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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

After being in relationship with him for 3 years, he broke up with me, I did everything possible to bring him back but all was in vain, I wanted him back so much because of the love I have for him, I begged him with everything, I made promises but he refused. I explained my problem to someone online and she suggested that I should rather contact a spell caster that could help me cast a spell to bring him back but I am the type that never believed in spell, I had no choice than to try it, I mailed the spell caster, and he told me there was no problem that everything will be okay before three days, that my ex will return to me before three days, he cast the spell and surprisingly in the second day, it was around 4pm. My ex called me, I was so surprised, I answered the call and all he said was that he was so sorry for everything that happened, that he wanted me to return to him, that he loves me so much. I was so happy and went to him, that was how we started living together happily again. Since then, I have made promise that anybody I know that have a relationship problem, I would be of help to such person by referring him or her to the only real and powerful spell caster who helped me with my own problem and who is different from all the other ones out there. Anybody could need the help of the spell caster, like of issue of not be able to get pregnant for many years, lotto, his email is DRAISEDIONSPELLCASTER@OUTLOOK.COM you can email him if you need his help in your relationship or any other problem like wining lottery your problem can never remain the same again, it will turn a thing of the past in your life.

July 27, 2016 - 7:43pm
EmpowHER Guest
Anonymous

I lost my 1 years relationship three months ago . My ex left me with so many pains and since then I have been heart broken and shattered. I have contact 11 spell casters and 8 of them has rip me off my money without any result. I have Emailed so many sites online looking for a good spell caster till I was directed by a 28 years old girl to DR ADODA who help. At first I never believed him because he was requesting for some amount of money to buy items, it took him three weeks to convince me and something occur to my mind and I said let me give him a try . I was very shocked when Marcus called three days after I sent Dr ADODA HELP the items money. He apologies for all he has done wrong and I am very happy that we are together today because he proposed to me last night that we are getting married next month. I will advise you to contact Email :adodalovespelltemple@gmail.com. because he has done wonders in my life and I believe he can help you out in any problem. FROM MISS Arabella.....

July 27, 2016 - 4:56pm
EmpowHER Guest
Anonymous

My husband was diagnosed with MS 7 months after we were married. We knew he had something wrong because he was having trouble with balance and walking. I thought after diagnosis things would get easier. But they have only gotten worse. He is on disability and stays home all day. He has a hard time making changes to how he does things. A lot of the day to day I am cleaning up things, and helping him do things. I make his breakfast, get him dressed, prepare lunch most days, go to work for 8 hours and then come home and do all of it throughout the night. We both didn't want kids because we wanted our careers and each other to be the plan. My career has taken a backseat to his illness. He has no drive to leave the house EVER. I am someone who sleeps next to him but helps him with everything. I am not his wife. Do we love each other YES, but I can't keep this up. I need to live my life because we have only been married for 4 and a half years. This was not how it was supposed to be. We are so unhappy with each other and I cannot deal with the constant destruction in my life. I don't want to divorce but I do want a life. I would love a life with him but he doesn't want one. He has told me that. He wants this one to fast forward to being over.

July 15, 2016 - 1:22pm
(reply to Anonymous)

It is such an unfortunate situation for you both - starting out with a hopeful future only for it to be dashed. It is very difficult to accept this disease and it sounds like your husband is struggling to do so and is depressed. He may benefit from counselling as well as anti depressants to help him get through for now. My husband refused to accept it at the beginning. It was like a hot ball that he kept throwing at me and I kept throwing it right back. I used to attend MS meetings and go to social MS evenings but he wouldn't come as he was frightened of what the future may hold. I must admit I was shocked at what the future may hold when I saw others whose MS had advanced quickly. My husband also refused to take care of himself - wouldn't wear a coat in winter, wouldn't eat regularly or healthy meals when not with me - basically he acted like a child and he wanted me to be his Mum. I didn't sign up for that. I eventually left as my daughter became mentally unstable due to the dreadful atmosphere between us and because of how much he had changed. It is so much better now that we are in separate houses. We are still married (minus the intimate side) but the difference is that the respect is slowly but surely coming back into the relationship. I feel for your situation as you still love each other deeply and it is heart breaking that you want a loving relationship and he doesn't which is very difficult. I hope that you can get some help for you too as it sounds like you could do with someone to talk to. It can be very isolating as a carer of someone with MS and you can feel very alone. If you are in it for the long haul, you will have to put things in place for the future - carers to come in and help him while you go to work (it is very important that you do not give up your career as this will get you through). The MS Society can help you with information regarding this. Please don't suffer on your own. Take care,

July 16, 2016 - 6:30am

The kind of woman who leaves a sick spouse is someone who is at her wits end. My husband was diagnosed with MS when we were engaged. We were married for 16 years, however, I didn't bargain for the controlling, lying (he calls it fibbing), manipulative, competitive streak that this nasty disease brought out in him. Life became so intolerable that I was confined to my room. One of the reasons for leaving in the end was because my chronic back pain which has left me semi-disabled following child birth (his child) became in my husband's eyes irrelevant. I would ask him each and every day how he was feeling, however, this would not be reciprocated. If my husband had a relapse I would wait on him hand and foot, however, whenever I was ill or suffered back pain he would simply leave me in my room and not make enquiries - I wouldn't even get a cup of tea.

The second and perhaps more important reason was that my teenage daughter became mentally ill from the dreadful situation and atmosphere between us in and around the house. My focus became my daughter who spends half her time with her dad and half with me (her choice - she is 15 years old). My daughter is on prozac but is slowly but surely getting better. My husband and I (still married) are more tolerant of each other right now and better friends than before. Whilst we were both together and in such terrible circumstances we could not help each other, however, now we are there for each other when it matters. Grant it, me more than him but I can handle it with distance between us when needed.

I still love my husband (at least the man I married) and I long to see the person he used to be. I pray for a cure for MS so that one day he may eventually return. This heartbreaking disease puts a juggernaut through your life. For those of you who think women who leave a man with MS I ask you to walk a mile in my footsteps before you judge.

July 6, 2016 - 10:50am
EmpowHER Guest
Anonymous

Indiana-im the one with heriditary colon cancer,im in remission,found out now i have autumne disease,living on chemo and just had a growth removed off breast.just went through genetic cancer testing,my husbandd is not helpful,i feel i burden himcause he cant live his hunting life,on top that we have a 28 year old cerbral palsy son that lives at home his our baby huey.he is mobil but requires help in every way.i cry out to god alot and look at i had a great job which dr said i cant do no more,but i beleive in the marriage vowls.but the one that walks out of the one who ends up sick for no reason of explaning as cancer.i believe god come and show his self to that person.marriage is not easy healthy but you walk hand in hand with each other one day at a time its hard.but think if it was reversed would you want walked out on cause you became ill.yea ill say my husbands a butt but ive crawled to vomit cause chemo left and never asked can i get you something.ive learned dont expect and then dont get get let down but i beleive it takes great faith and tell god we married for better or worse,i cry on these storys cause iwant to be normal how does people not want to love and help that person with sickness.well i feel its selfish of the healthy person cause i would never give up on my son.so pull your pants up deal with whats been given to you ,love unconditionally and watch god show up even if you dont beleive in god.his there and i know the people who are praying gods breaking him.life isnt always easy but how we chose to deal with whats been given to us.so if the healthy spouse leaves i pray god gets hold of them shows them life isnt always about them.ill be praying for all you guys.

July 3, 2016 - 8:05am
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
HERWriter Guide (reply to Anonymous)

Hi Anon

I'm really sorry you're going through so much. Seems like your husband may be instigating issues right before you leave in order to force you to stay. While he needs a lot of help. you also really deserve time off.

Is there anyway one of your other children could come in and take care of him while you go?

I assume private respite care is not available to you, financially. Could you get a nurse;s aide two hours a day? I think if you get someone with references, this would be about $15/hour although I know that quickly adds up. Could your children help to pay?

Since you work, he doesn't seem to need you 24/7. Once hour in the morning and once at night - would that work?

Do you have a friend/neighbor who could help?

Best,
Susan

June 27, 2016 - 1:33pm
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