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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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Expert HERWriter Guide Blogger

Timeforme - When a family member has a serious illness, there often are actually two patients - the person with the disease, and the caregiver who is helping the other person. Often the caregivers don't see themselves as being in need, and don't get the time and attention and support that they deserve to have in order to cope with and survive the family illness even though the illness has changed the family dynamics, added additional responsibilities, made many planned events no longer possible, affected finances, and in general has turned life upside down in many ways. A question for you to consider is whether you've gotten any outside help to take care of yourself and what you're going through? Are you trying to deal with this totally on your own, and maintaining a false front to show you're "with the program" at all times? Have you considered joining a support group? What are you doing for YOU?

July 12, 2010 - 6:13pm

I have read through this thread of incredible conversation at least three times. It feels amazing yet strange to see so many other women living in such a similar situation. Some of you have made decisions that I am struggling with and some of you posted your situation many many months ago. I am curious if there is anyone out there that posted their situation a year or so ago and have comments about how they feel today about a decision to stay or go.

I have posted as timeforme on another thread, but essentially... I am nearly 44, been married about 15 years and have 2 children under the age of 10. My husband was diagnosed with Progressive MS about 10 or 11 years ago and has been in a wheelchair full time for about 8 of those years. We are lucky that he is still able to work full time as I have been unemployed for over 2 years after being the major breadwinner for all of our relationship.

I hear what so many women say .... it is not so much about the MS.. or the disease.. as it is about the emotions or the depression or the personality change. Yet, I am beginning to learn that this is all part of the disease. We tend to categorize the physical limitations of the disease, but the emotional and cognitive impact is also a natural affect and becomes a natural limitation.

I am the caregiver and I have become resentful.. I don't want to be this person, but I do not look forward to him being home. I work all day either with kids, job hunting, household or errands and know that I am totally on-duty when he arrives home. The MS takes over and takes control. We have great days and we have horrible days. I love him. I hate him. I love our family. I hate this disease. I hate what it has done to our coupledom, our relationship, our love affair and I have no control and I have no impact. People feel sorry for him and they expect from me.

All of the above has made me resentful and that is not who I am. I deal with this one day at a time and do my best to keep a smile on my face... but my family knows when I am not 'with the program'. I feel like I am suffocating on some evenings, some days....

I have set some goals for myself and will try to stick with them, but I am fearful of the impact on our children if I choose to leave eventually. They will blame me, most will blame me...

Really? am I doomed to this life? Is this horrible to think of my life like this? selfish?

I am really curious about how others have felt after they decided to stay or go and what impacts they had to deal with.

thank you,
timeforme

July 11, 2010 - 3:30am
EmpowHER Guest
Anonymous

Understand your situation my husband is ill with MS.

What I can tell you is please think about cause and effect without time restrictions that just means that all of us are accountable (not blame) for all that we do and say.

Please read about Nichiren Daishonin's interpretation of the Louts Sutra, best English translation by Burton Watson.

May 12, 2010 - 1:41am
EmpowHER Guest
Anonymous

My husband has been chronically ill with Crohn's Disease, Heart Disease, Diabetes, Emphysema, and I have been the only financial support and caretaker for the last 10 years. My son lives with us, is going to graduate school in CA and I've had enough. I've stayed with my husband for the sake of my son and I'm done being a martyr and sacrificing my own life. My husband is cantankerous, depressed, argumentative, always telling me what to do, and this 63 year=old woman can't wait to live alone. If your ailing husband stops bringing anything positive to the relationship, it's time to move on. Otherwise, you only have yourself to blame for your lack of courage to live your own life. We women are programmed to put everybody else first. I'm done with that part of my life. It's my turn to live life on my terms.

May 11, 2010 - 11:42am
(reply to Anonymous)

Anon,

I really appreciate you writing in and adding your story. It sounds like you've been on the road to this decision for a long time, and I can tell that it's been really hard. I think you are right -- we as women do tend to put everyone else first, it seems to be part of our genetic wiring in addition to being socially acceptable. I would be interested to know more about you and how you finally came to the decision to leave. How will your husband be supported and cared for without you? I ask only because I think that's a major obstacle for many spouses who otherwise might choose to leave.
I wish you only the best, and hope to hear more from you.

May 13, 2010 - 8:26am
EmpowHER Guest
Anonymous

I would suggest that you are the kind of woman who deserves a life AND deserves to care for herself as a valuable human being. My story about MS reads exactly the same as yours, only I stayed until I became clinically depressed and almost committed suicide. I am now 35 years out of that marriage having come to the point that I had to realize we were BOTH valuable enough to seek and find help. Overcoming the "shame" and "guilt" of leaving was NOT easy. It STILL is NOT easy. However, I do believe that the value of being whole as a person WHO HAD THE COURAGE TO MARRY YOUR FIRST LOVE, outwieghs the danger of ending up like I did. My brother gave me the very best counsel I think when he told me " you have to learn to give others the priviledge to misunderstand". They will never understand... they cannot walk in your shoes. I wish you the very best. The only bad decision is one that takes you down with him to the point you are no good to him anyway. If you want someone to listen who has been there... I am at .
D
(Author's personal email address removed by EmpowHER Moderator. We encourage those who want to reach out to others to use the email feature of this site instead of publicly posting email addresses. )

February 21, 2010 - 11:03am
EmpowHER Guest
Anonymous

Hi all...it's me Nicole the original writer. It's been almost 2 weeks since I left my spouse. He filed for divorce first (not surprising since he has always had this need to control me). He is trying to obtain joint custody with he being the one to maintain physical custody of our son, and me to receive visitation as required by law. I've tried to rationalize with him that he is not well enough to care for a 4 yr old active boy, but he plans on fighting me tooth and nail. He is suing for custody, alimony, child support and legal expenses. He hired a criminal defense attorney who called me on Saturday morning screaming at me that I was threatening my spouse for not letting him have 4 overnights this week. I submitted a proposal for visitation to include Monday to Friday 3pm -5pm (after school), Wednesday overnight and one overnight on the weekend. He refused it and is supposedly going to offer me another option (I'm sure it will be assanine). He is unable to care for our son 24hrs per day, much less for days upon a time. He's going to make this hell. My son and I are staying at my parents house until Sunday and then I will be moving into my apartment. I've had to buy all new furniture and household items, but that's fine. I feel like even though everything is a bit of a mess, that things are looking up. I feel at peace with my decision. I've had days that I've cried, but not out of despair...mostly fear when it relates to custody. I know that I'm going to be in a much better situation.

February 17, 2010 - 5:26pm
(reply to Anonymous)

Nicole,

My favorite sentence that you wrote is, "I feel like even though everything is a bit of a mess, that things are looking up." I think that's amazing. Your strength and fortitude through all of this has been impressive. It shows me just what a good mother you are.

I too am sorry that your husband is acting this way, but it seems natural that he is lashing out this way. His options right now are (a) try to control you, be angry and make your life miserable, or (b) look himself in the eye and realize where he's wrong in all this. From all you wrote, it is clear that (b) is not something he will do.

You are taking the high road here, and while I know how hard it must be to handle it on a daily basis, you are doing a masterful job of caring for your son. You've taken him to a place where he feels loved and safe, and I'm sure it's a bit of a relief to him Having to go back and forth between his two parents is not ideal, especially when one is so angry, but it is better than living in the middle of conflict.

I know that you will make your case about the care your son needs and your husband's physical inability to provide it, and I'm certain that the judge who hears your case will take all of that into account. I hope that when your husband gets through his initial flush of anger that he'll be able to be less vindictive. But right now it doesn't appear that will happen.

I know all of this just confirms for you the fact that you did the right thing. Hang in there and know that we're here for you, too.

February 18, 2010 - 7:13am
Expert HERWriter Guide Blogger (reply to Anonymous)

Hi Nicole - I'm sorry to hear that your husband is behaving in this manner, but from what you've said before I'm guessing it's not a surprise to you. You convey a sense of peace as well as the determination to go forward with your decision and your new life. I hope your parents and others are able to provide you some avenues to vent your frustrations and maintain a calm level-headed approach to the legal manipulations and maneuvers that are ahead.

Sometimes the hardest part about taking an action is making the decision on which way to go, and you've clearly got that hurdle behind you now. Please keep in touch and know that we're here to listen and help anytime you need us.

Take good care of yourself, and your son. Pat

February 17, 2010 - 5:37pm
EmpowHER Guest
Anonymous

my name is sandra and Iam in the same boat as you,side by side I also have a husband with MS for 10 years it is not easy lots of probembs to many to tell .Short story is. We agreed for him to go to a group home where he will be safe,someone allway around for when he falls,to make him meals when Iam not there, to help him shower and all the other things that he needs.How do you leave him?????? do it now,It gets harder down the road.I still have not,dont think I will I also need hep reply to me we will talk heart to heart for real

February 17, 2010 - 12:03am
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