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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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EmpowHER Guest
Anonymous

Hi, glad i found this blog, I'd love some advise from anonymous strangers hmm, well I'm 52 man, my wife an i are married 29 years, she started having health issues 30 years ago, it started slow, i stuck with her through ups and downs, we had two kids now grown, she has a series of health issues, from intestinal disorder to asthma, to copd, side effects from being on steroids, etc, she smokes cigs and never tried to quit in spite of my pleas, then 13 years ago she had a bad car accident. had neck injury, spine surgery, no paralyzed but mobility lost, lots of pain, cant drive anymore, doesnt want to leave the house, on pain meds daily, depression, chronic pain bordering on firbermyalgia i think, constantly angry takes it out on those of us around her, i no longer feel loved, we aren't romantic, no sex in 10 years, im there for chores and errands basically. i had a chat with a relative recently, a woman, who her husband died not long before, and she had told me how lonely she felt. later on i thought to myself, well my wife is alive but i am lonely too! i still have some feelings for her but they are growing faint, I think its past the point of no return now, and i'm thinking of going but guilt is still holding me back, i wish someone would just say go you need to. i'm not getting any younger, and i can always hire a handyman to do her chores. love to her some thoughts... thanks

February 26, 2015 - 4:16am
EmpowHER Guest
Anonymous (reply to Anonymous)

i'm so sorry you're going through this and for such a long time. i obviously can't advise you to do anything but i can tell you you are not alone. there is a cool website called well spouse. it helped me a lot and many there have made the decision to leave their ill spouse. maybe you can find some insight there. please know that someone out here is thinking of you! sending peace your way :)

February 26, 2015 - 4:38am
EmpowHER Guest
Anonymous

I've been married 14 yrs. In all these years, there have been countless medical problems for him...me one. Many of them were accidents...I've decided he's the most careless man on the planet Earth. It is simply not possible that his luck is this bad, plus many injuries were proof of idiocy. Like wear googles. A human can't lift that. You get the idea. He also had chronic ear infections but until he stopped smoking the doc wouldn't do tubes...he's still a smoker, and its 12 yrs later. I've seen him through countless kidney stones (again refused doc advice and continued Tums abuse and abuse of mtn dew). I've seen him through 3 shoulder surgeries. All accidents that make him look dumb. One was "I have no idea how" ...a doc said "impossible." Others...doing somethg only the Hulk could manage. But what he did manage...was addiction to pain meds...and I had to see him through that too, twice. Now its been nearly a year and the best doctors cannot diagnose him. It seems like an IBS sort of deal but after tons of hosptalizations, countless tests, and thousands of $ there is no dx and we are just treating symptoms. Hes been put on a strict diet and told to stop smoking (AGAIN) but isn't doing it. It really hurts that the kids and I are on this horrible diet for his sake and not only does he eat thgs he shouldnt, he still smokes and lies about it...and HES THE ONLY ONE THAT COMPLAINS ABOUT THE DIET!
And speaking of complaning...he's seriously the biggest whiner I've ever known in my 39 yrs. He can have the same flu but he is sicker. He has never told a medical pro his pain is under 5. Ever. My kids can handle pain better. But this "poor unfortunate" man is surely worth it right? He must have some redeeming qualities? One. He works hard at work. No where else. Plus he doesn't miss work..until this past yr he couldn't workat times...and lay offs for big amounts of time. Not his fault. But overall a shitty husband. He rarely apologizes and often has zero reaction when I tell him I'm lonely in this marriage. I saw on facebook he asked a lady out (she has since cut off all private chatting with him..no answer lol). He's not hot or anything...or socially adept..or smooth or secretive to cheat...at least that's my opinion. He's a terrible liar but a "good" omitter. He's terrible with money...a big source of his issues in gereral relate to immaturity. He's 41 and still would rather spe nd on fun without thinking ahead to how much we need when the bills are due.
With all this awfulness I've tried to forgive and move forwRd with him forour kids. Then 2 wks ago he went way off the diet and began smoking like a chimney again. He was hospitalzed for days. As soon as things begin to get better for him physically...he has probs with an eye. After 4 docs and diff diagnoses, they removed somethg he has no idea how it happened. Doc said it was plastic. Its yet another medical mystery. Oh and another thing...the man is never well. Ever. in 13 yrs. It can be weeks after yet another prob and clearly he's doing good. Someone asks how he's doing with ------- problem and he will always say somethg to the affect that he's well enough to do fun stuf but wow I'm still terribly sick. Hes become a total joke to many family members. I've begged him to stop talking this way..and to stop constantly talking about all his med issues around our kids. He usually doesn't stop...bc there is no one more important than he...just like no one could hurt or be as bad off as he. But all these probs mean he's so caring when I'm sick right? Wrong. I'm on my own. In fact I had a cancer scare and he told me he didn't think he could handle it. Like I could handle a drug addicted husband getting 3 surgeries? With an infant at the time? I've asked why I get the shitty husband and he gets the great wife. He brags about me all the time to everyone. Even on facebook! So the other day he tells me he can't move his foot. I googled and its called drop foot. His gi doc said to see a neurologist asap. I told him I don't think I can handle it. I've seen him through so much. Held on to duty and vows when I felt I couldn't do it anymore. Put one foot in front of the other cause what wife leaves an ill husband? A wife in a bad marriage to an ill pain in the ass, that's who. If he were a good husband I could bear all. But going through all this with my kids to watch (again) ...I don't see it.

February 16, 2015 - 2:12pm
EmpowHER Guest
Anonymous (reply to Anonymous)

You are funny...even though your situation was far from it. It's sound like your husband might have Aspergers...with little understanding of self care or the needs of others...but a consistently hard worker. I wish you a whole and happy life what ever you decide.

February 16, 2015 - 11:10pm
EmpowHER Guest
Anonymous

I am so happy I came across this. I have felt so alone, felt like a horrible human being because I am so emotionally exhausted from having a husband that is constantly ill.
None of it is his fault, it's just the hand he was dealt. And he is not a whiner at all. I have been there for him through 5 back surgeries, multiple procedures and tests, and uncountable doctor and specialist visits. I have had one major illness in our 23 years together and he was there for me, but no where near how I am there for him.
Our relationship needs work, we need to reconnect as a couple, not as patient/caregiver. His illnesses are not life threatening or completely debilitating, but they consume our lives. There is never a "good" time to talk about us because there is always something wrong. I feel like a complete and total heel because I have come so near to the end of my rope. I am tired of being Superwoman. Tired of it all being about his illness. Tired of feeling like I am a roommate and not a spouse.
I know he doesnt want to be sick, he isn't a hypochondriac, but how can I wave the white flag and be selfish and say what about me? He has health issues but I dont. He has physical limitations but I don't. He lacks energy but I don't. I do go out with friends, I do things for me, but 90% of my time is with him and for hIm. I want him to act like he WANT me, not just that he NEEDS me.
I just feel so stuck. He has told me to move on, that it's ok for me to go, but I know he doesn't mean it. I love him. I want to be here for him but, god help me, where does one draw s line?
I am just happy I am not alone. Thanks to all of you who shared.

February 4, 2015 - 6:45am
EmpowHER Guest
Anonymous (reply to Anonymous)

Check out the caregiver page on EmpowHer http://www.empowher.com/caregiving-support

Don't go it alone:
*Seek out a caregivers group...preferably one headed by a professional.
*Ask him about couples counseling and seek out a counselor with chronic illness experience... Chaplains are a great resource in this area.
*How can his extended family help more?..Maybe come stay and help sometimes or take him home.. give you a vacation even...more than once...preferably a few times a year...Once a month if close enough. A can of worms here with potential conflict but also healing...the best thing that can happen to any of us.
*Also there are places that can take him for a week or two...preferably with rehab. Hire help for care or chores. Maybe his family can help pay or he could start a fund fund on line...to give him a part in his care.

Worthy concepts:
*Carve out a personal life and goal you can work on a few hours a week.
*Tell him loving what you need from him and your own life..that you are willing to find middle ground but you have to have your needs meet also...because you will burn out, get sick and or feel resentment if you don't...Game plan with him...so he is not just focusing on his sickness.

Here is class he and u can listen to:
http://www.cnvc.org/ProfileInformation/2011/11/23/marlena-willis

Check caregivers video on this Stanford...It's about more than just cancer.
https://stanfordhealthcare.org/en/programs-services/cancer-supportive-ca...

February 4, 2015 - 10:17pm
Susan Cody HERWriter Guide (reply to Anonymous)

Hi Anon

You are not alone at all. Please check back here, this is a busy thread and I think it's good to keep talking and expressing our feelings.

Best,

Susan

February 4, 2015 - 7:43am
EmpowHER Guest
Anonymous

To Anon whose husband has MS:
I was surfing the web while thinking about the same issue that has preoccupied my every waking moment for at least 10 years. Should I divorce my husband or not? Is there a way to fashion a new relationship or for me to accept all his increasing disability and nasty attitude for the sake of our family, 2 daughters?
He was diasgnosed with MS around 1988 while I was pregnant with our second daughter. He has slowly progressed is now in an electric wheelchair mentally somewhat cognitively impaired but essentially still competent and intelligent.
He was an avid sailor, racing high speed trimarans and in general a risk taker. I am the conventional working person who kept it together all these years. He was productive managing property we own but always has been 100A% for himself first at all times. He is handsome charming presenting as a warm friendly fun person to most people-not me when we are alone for long. I honestly believe there is an unacknowledged conspiracy among the healthcare providers to hide deny express the very real fact that MS often changes personality, changes in the brain or psychological need create an extreme lack of insight, ability to plan, lack of empathy -reduced "executive" function. Not dementia but mild to moderate cognitive impairment that wreaks havoc on communications, future planning, cause a lot of rage in both the patient and the family especially spouse. At the same time the MS patient receives attention, care, sympathy, empathy, lots of offers of assistance etc. I have put up with way too much abuse believing he is worth it as he still father of our daughters and we have already made it so many years.
I have made stupid decisions about this marriage. I should have divorced long ago, accepted the fallout, been honest with myself and allowed our daughters to face reality, too. I am 66, lonely, financially ok, living in my own house seeing husband frequently pretending we are still a couple. Every moment all he thinks or talks about is himself, not complaining about symptoms but talking about his inventive ways of dealing with impairment and charming others to provide him with services, household chores, and now probably driving. I have every possible symptom of depression and anxiety. I seem immobilized and and I guess frightened to start divorce process now although I will be financially compromised if this goes on. I wish he would have another serious accident and end up in some facility because otherwise he will continue to drive, spend money, sail and have accidents eventually maybe seriously injuring someone other than himself. Friends have refused to drive with him for many years.

I am still trying to manage this because our younger daughter has suffered with mental illness diagnosed last year in college. It has added an extreme weight on me as I worry what will happen if I die. She is very sensitive an worried about her dad. I believe he plans on capturing her to be his caregiver when and if she cannot work or be independent.

I think if a peron is good, kind generous and caring having MS would still be a major relationship challenge. BUT if it was difficult before all the problems will be magnified. Get out while you are still able to take a shower get out of bed and maybe read a book.

January 29, 2015 - 12:51pm
Julie Bareford Brittain

It is a miracle that I happen to find your story today! I too am "stuck" in a relationship I am not happy in. I have dated this man for almost 6 years now. He is a once successful businessman with quite a selfish attitude. He lost everything when the economy hit bottom. (this is when I met him) He was at that time recovering from a horrible motorcycle accident that nearly took his life. For the last 4 years, he has been very ill and finally went to the doctor and received a COPD diagnosis...stage 4. He has done remarkably well, considering how many times he has been hospilized and near death. In and out of the hospital, meds, O2 etc...

I was ready to leave this time last year when he suffered a terrible accident in a fire. He had 3-4 degree burns on 25% of his body. We spent months in the burn unit, me taking care of him at home....him invading our lives.....
We have no sex life except for 2-3 times a year for a few seconds. I can't hardly bring myself to kiss him at this point and I just want out. I have gained 30 lbs in the last year, 50 since we met. My life is completely different than it use to be and I want it back!

What kind of person would I be to walk away and let this man die alone? Broken hearted? He has grandchildren I love. How do you explain? (I am 47, he is 54) I was planning my breakup to happen today when I found your response by shear accident! Your story is the only one that has ever some close to my situation! How do you deal with the guilt of just walking away????

January 17, 2015 - 3:32pm
EmpowHER Guest
Anonymous (reply to Julie Bareford Brittain)

Where are his kids? His x or siblings? They need to be involved in his care. Maybe it's time he lives in a situation where he can get full time care and attention ...and you can still visit. If his family takes him, you won't know if that will all happen with grace, but you should not have shoulder this alone. I see so many of us women on here are not sure how to ask for help, set boundaries and communicate with empathy but assertiveness. It's not easy but we have to learn...because it's easier then killing ourselves slowly by being a caregiver martyr.

January 18, 2015 - 4:08pm
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