ask: Living with and possibly leaving a sick spouse--a heartfelt story from a reader looking for advice
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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Michelle, thank you so much for sharing this story! The emotional aspects of her letter are very familiar to me and I wish I could reach out to embrace her and let her know that her feelings are very normal. Both are going through different stages of grief which are typical when people and love ones face a loss, a terminal or degenerative condition. These stages are actually the start of a healing process which may last longer with conditions such as MS.
I had to understand my own grief process when my hubby was diagnosed ALS three years ago. The sense of loss and frustration was beyond measure. I felt cheated and angry at him for getting sick. The prognosis on ALS is 3-4 years of life. With two young kids I often blamed him for not taking care of his body and for leaving all the burden of the house and his illness to me. To better understand this grief process I read a book by Dr. Elisabeth Kubler-Ross "The Five Stage of Grief" Here is a summary in a nutshell:
1. Denial and Isolation.
At first, we tend to deny the loss/terminal diagnosis has taken place, and may withdraw from our usual social contacts. This stage may last a few moments, or longer.
2. Anger.
The grieving person may then be furious at the person who inflicted the hurt (even if she's dead), or at the world, for letting it happen. He may be angry with himself for letting the event take place, even if, realistically, nothing could have stopped it.
3. Bargaining.
Now the grieving person may make bargains with God, asking, "If I do this, will you take away the loss?"
4. Depression.
The person feels numb, although anger and sadness may remain underneath.
5. Acceptance.
This is when the anger, sadness and mourning have tapered off. The person simply accepts the reality of the loss.
During grief, it is common to have many conflicting feelings. Sorrow, anger, loneliness, sadness, shame, anxiety, and guilt often accompany serious losses. Having so many strong feelings can be very stressful. But denying the feelings, and failing to work through the five stages of grief, is harder on the body and mind than going through them. When people suggest "looking on the bright side," or other ways of cutting off difficult feelings, the grieving person may feel pressured to hide or deny these emotions. Then it will take longer for healing to take place.
Not everyone experiences all stages and these are not necessarily linear, they can be experienced in not particular order at any given time. From depression back to bargaining, back to denial for example. What is important is to recognize them and find ways to cope with each stage. The hardest part for me was to learn to separate myself from the disease and for my husband to delegate the things he had always done himself, like managing the finances.
I also had plenty of those "bad" days where I wanted to just take off to never come back but I gave myself time to reflect and accept my feelings for what they were. His disease has given me the greatest opportunity to find the true purpose of my life while I am on this earth. I believe in a higher plan and without this disease and this journey, I would have not sought spiritual growth. I have learned to be more patient, empathetic, and love in a way I did not know I could. I am learning to step outside of myself and be of service to the man who I promised at the altar to be there in "sickness and in health". Those words now were not meant to be taken ligthly.
Her husband's behavior is not unusual. He needs to come to terms with his own illness and she needs to de-personalize or detach herself from his disease. There are many support groups and online chat rooms where both of you can participate and learn from other's experiences. MS is managable and there are many new treatments offering hope. These are ususally discussed on those forums.
Our journey was also challenging but we have found times to laugh and make fun of the situation. For example, since he is totally paralized we need to use a hoyer lift to transfer him to/from the bed to the wheelchair. We call this moment the Disney ride. When he needs to have a bowel movement, the kids call it daddy's poopy time. We laugh a lot and he smiles. My favorite is when we need to suction his trache and his oxygen saturations drop from 99 to 57 (pretty bad), while the lips are turning blue and he is gasping for air, the lady that helps me who is from Kenya and I work on his chest and calmly I tell him it is time for the Kenyan drums on his chest.
We are in a better place now after 3 years despite the fact his disease has continued to progress at a fast speed. But as a caregiver, spouse and mother, I have re-defined what is "normal" for us today. My hubby's journey is different than mine, but we both bare the burden of dealing with the disease in our own way. On his end, the disease has taken his identity, his physical abilities and his manhood, and for me it had robbed me of a husband who was the breadwinner, the protector and my lover. While he is beginning to see that those around him love him with unconditional love I force myself each day to see the bright side of this experience. We may have settled for a new way of living with his disease but not every day is perfect.
I think women are better equipped to be caregivers, and men do worse when they are the ones experiencing the serious illness, especially at such a young age. The feeling range from seeing themselves as failures to being a burden to their family. Nature design the programming of men to be the hunters, the protectors and they do not do well when disease hits them.
Grieving and its stresses pass more quickly with good self-care habits. It helps to have a close circle of family or friends. It also helps to eat a balanced diet, drink enough non-alcoholic fluids, get exercise and rest. I meditate and read self-improvement books. One of my favorites that has also helped greatly is Eckhart Tolle's books. http://www.eckharttolle.com/eckharttolle.
If good self-care habits are always practiced, it helps the person to deal with the pain and shock of loss until acceptance is reached. It has been 3 years for us and during this time I have learned more about who I am and what I am made of.
There are many other books I read throughout this journey but one that had a major impact on me was this one. You do not have to be of any particular faith to benefit from reading it.
"Don't Waste Your Sorrows" by Paul E. Billheimer (Author)
January 8, 2009 - 2:25amThis Comment
Your letter gave me hope to cope with my situation. My husband is also sick. He is 57 years old and has heart problems having suffered 2 heart attacks but the most difficult for us is his anklelosing spondalitis. Don't know if I spelled that right but it is a disease that attacks the nervous system much like MS. He is in pain everyday and night. He is cranky too and irritable which is understandable. He doesn't sleep well at night as the pain keeps him awake and he makes noises in reaction to the pain sometimes making it difficult for me to sleep. I met him 10 years agao and he was my knight in shining armor and was so wonderful and fun. We went out and did fun things like movies, dinner, dancing, karaoke but all that has stopped now due to the progression of the illness. I met him through a dating service and did not know about his illness until it started to get worse. He was a high achiever all his life, very smart and good looking. He was a senior computer engineer and a retired army sargent. I learned so much from him. I am a special education teacher but am laid off currently which didn't help my frame of mind but I'm hanging in there. Now he cannot work due to medical issues and sleeps all day since he can't sleep well at night. He does some chores but I do the bulk of them which since I'm available, I don't mind doing. I've endured 2 heart attacks with him and this back disease. I still haven't accepted it and neither has he. He is depressed and has been so for quite some time now. I'm depressed too because I want my life back. I'm now at the point where I'm reaching out, in that, I want to know how to do this.
September 20, 2009 - 5:52amI need to tell someone how bad I feel. Your situation is very similar to mine. I am 37 years old, my husband is 41. I have been disabled since 1998. I have been in 2 car accidents that were not my fault. I have Fibromyalgia, cervical and lumbar degeneration, nerve damage to my spine and back, chronic pain, female medical problems, insulin resistance, metabolic syndrome,and too much more to list. My husband has Gastroparesis, which is paralyzed intestines and stomach. This caused severe Diabetes. His blood sugar levels go over 600 many times, it should be between 70-99 on an emoty stomach. He also has Barrett's esophagus, lung problems and more. He worked before he became ill, and I stayed home and cooked, cleaned, took care of his daughter, laundry, work clothes, and also rescued and cared for abused animals. Also, went through years of hell w/his x-wife and court battles and her just plain evil ways. I pushed myself and always push myself constantly through so much. I have had 3 miscarriages, but by the grace of God have my Baby now. My baby is my life! My blood relatives have no use for me or my husband and even my baby. Because my mother helped me out financially b/c we are both disabled, they are worried about their inheritance. My mother and brother have really done a lot to hurt me, unforgivable things, they are not even sorry and get mad if I am upset. My mother didn't want to hear about how hurt I am about the other siblings disowning me and literally walked out while I was going to cry. She says she is tired if hearing about it! My mother told me also to not call her anymore. I have no family and my friends I had were lost b/c of shenanigans my mother and brother pulled. I am all alone with every responsibility from my children, animals,financial worries b/c we are both disabled, cleaning house, cooking, I have to hold down the fort. My husband does not seem to understand w/my injuries, I can not do EVERYTHING like I am doing. He also complains about not being able to get better b/c of the doctors which is true, they don't know what to do, but he won't find other doctors. He doesn't check his blood sugar like he should b/c he feels since the insulin he has to take is so high& his paralyzed stomach won't absorb it, and he will still be sick, why do it? He can take over 250 ccs a day of insulin and not get right. Insurance won't pay for him to go into a nursing home to get 24/7 care and regulated to later get an insulin pump like the Endocrinologist wanted. I understand how sick he is and frustrated over the system, but I am sick too. I am overworked, depressed, isolated, and in terrible pain. I can't even go to my Doctor's b/c I am doing everything else. I am miserable. He does try to do some things, but not hardly ever any work, work,dirty jobs. He fusses at me all of the time and swears it's me doing it. He passes out in the middle of talking to me, if he does talk to me, b/c he is always too sick to talk. I am so lonely, I have no friends or family, I am so emotionally hurt by them and now him. I want to have more children, but we don't even get along to do that. I am stuck. I am going to be 38 years old and I can't waste my childbearing years on a marriage that is so unbearable at times. I don't want to leave him, especially b/c of my baby's sake. I don't want her being shifted back and forth. He thinks he should get 50/50 custody, but he is not able to do that w/his conditions. At least even w/ all of my problems, I can care for my baby very well. I am so distruaght! My Father is the only one that could help me and he passed away in 1995. He was my angel, my rock, the family picked on me constantly b/c I am the youngest of 4 children, 17, 15, 14 years difference in age from me. I came along 14 yrs later. My Dad would always tell them to leave me alone, he defended me during fights w/my mother. He was always honest and fair, and right was right and wrong was just plain wrong, no matter who you were. I miss him so much and I don't know what to do anymore! My Rock is gone, my best friend, is gone, the best Daddy in the world is gone! And everyone, family,husband, is against me. My husband used to help me w/ my family. He became my rock, but that's gone, he gets so irritated w/me, and I think he should be darn glad I do everything I do! I am just really alone. I have my Baby, who I breathe for, and my children in fur. My step-daughter is there sometimes, but is a teenager who has been brainwashed by her mom who abandoned her and her sibling from another marriage, for a different man & left the state. So, she has her own issues. I try to mother her and help her as much as I can, but she has learned how to cut off feelings and not deal w/pain. So, her I am, drenched face from sobbing, missing my Dad so terribly and feeling abandoned myself by my mother and siblings. What can I do, can someone help me?? I don't even have a friend. Never did I ever think my life would turn out this way. The one blessing I really do have is my baby, but she will have no Grandpa who would have loved her more than life itself alive, or my husband's father who passed away(wonderful man, God Bless Him), and my husband's mother, who had a heart as pure as gold and so much love to give, she passed away(all very young), and no family ALIVE on my side is worth it or even cares about my baby. I have no family to share her with. I know you have your own problems, but I need someone to talk to, could you maybe even post this, I am learning when I can about all of this new technology.
March 18, 2011 - 12:09amHi Anon
Thank you for sharing your story and I'm sorry you're facing so many troubles.
I think it's good to get all your feelings out like this and I think you probably feel better by just talking about it.
We need your help so that we can help you further. Can you tell us what you think you need to do to change things? What are the most immediate things that you need help with? It seems you've had some issues for a very long time so if you can compartmentalize parts of it (say, "physical", "emotional", "financial", "marriage:) so that we can help you, one issue at a time.
We're here to help but since we don't know you, let us know some initial steps that you think need to be made and we'll work with you from there.
We hope to hear back from you!
March 18, 2011 - 11:48am~Susan
I also have Fibromyalgia etc, the disease of a thousand faces and my hubby has Diabetes etc for 20 years now. Take steps to get control of YOUR life....not your husband's. You sound like me.....the blind leading the blind and I do not mean this negatively, it is just the way it is when a sick person must care for a sick person.
March 18, 2011 - 9:22pmYou might as well be getting some things done while you are grieving....and yes, I feel awful that you are going through this.
1. Make a list of priorities (what you need to get done on each day of the week, what specialists you must see, your support group meetings, grocery shopping, therapy visits, doc appointments, time out while your child is at a day care or sitter so that you can have 2 hours free time each week, laundry duty, floor and toilet scrubbing, etc) for yourself. It will empower all of you. See what it looks like on paper.
2. Stop expecting a clean house and learn to eat soup, macaroni and raw vegys and fruit.
3. Let the emotions take the back seat. Your Fibromyalgia support group will listen and give you some encouragement. Think about giving yourself one day for chores and then a few hours to your husband. He can use the VIM too and pass out if he has to, at least he will be contributing to his child's health and sanitization.
4. Get tough. Your man can learn to cope too. Look up respite centres and drop him there for a couple hours so you can have a break!
5.Visit the chiropractor....any medical person who is covered under the health plan for free. And when you have seen them all....start over.
6.Visit Storytime at the Library...it's free, fun and something to connect to with your child....your husband would even like it.
7. Find a church, a bible study, various blogs, emails, compose poetry about love, family, parents, how much they mean to you and enter them into contests.....there is usually prize money.
8. Don't be afraid, and don't be defeated. Life will get better, change, and there will come some restful and happy times again.
(because of my health, half of the month is good and half is very painful but I live wildly good for half a month)
9. turn on music with high pitch like flute or birdsong. It stimulates brain waves, uplifts, I have read......and it educates your child.
10. Check out the art galleries or make simple crafts, knit, sock puppets, folk art paint,
What ever else you can come up with will be appropriate for you and your situation. Remember to focus outside your diseases as much as you can. I have found so much to live for in illness and have learned how strong us caretakers can be.... besides,,,,I want to be a Grandma! Luv & Care!
Hi Anonymous,
March 21, 2011 - 7:59amWow!! You have come up with some great ideas. I'm positive your words of encouragement and strength will provide some help for someone in a similar situation. Thanks for being here!
Anonymous, I'am 46 years of age. I have the same health problems you have from a work injury. My husband has severe chrons, scolosis,osterporosis and a bad back. Back surgery did not work. I've been dealing with his problems for 20 years and my self 9 years. We have two teenage daughters and that's it. No family everrrrrrrrrrrrr. No emotional or finacial support. If i'm not worrying about him Im angry, lonely , sad, bored and un-yhappy with my life. Always a struggle finacially. I have my girls and they let me know there here for me but never no fun, no family, it really sucks. Sometimes I feal like that movie ground hog day. I love my husband and it is not his fault for his illness but what is to get out of life but hardship and love that gets me through. Linda
June 12, 2011 - 4:06pmThe post the woman wrote about her husband and Als was helpful for me as I am living her exact story. I need to find a way to not be angry at him. Thank you.
January 20, 2012 - 4:37amWhat a heartbreaking situation for you. It is easy to see that you are struggling on so many levels; it's a very complicated question, and you're obviously very torn.
Your question, "What kind of person leaves an ill spouse?" is the heart of it, isn't it? We take the vows, "in health and in sickness, for better or for worse," and in some way that part even seems more solemn than the rest, because we are agreeing on the day of our marriage that we will not abandon our spouse in his or her time of need. I am sure they were even more poignant for you, since you knew he had MS at the time.
But there are deal-breakers. One answer to your question about who would think of leaving an ill spouse might be "Someone whose ill spouse is abusing them."
It sounds as though you are living in a situation filled with emotional abuse, and it makes everything more difficult. The question is, do you have to take that emotional abuse until your spouse dies?
Part of the answer depends on how you will feel in the future (in either case). If you honor the relationship regardless, if you stay and keep trying, will you feel as though you gave your all and can look back with no regrets? Or will you feel as though you made the wrong decision because you were immobilized?
Part of the answer is medical. It is not the physical challenges that are defeating you, it is the psychological challenges. Have you or the two of you spoken to his doctor about the severe changes in his personality? Could changes in medication be responsible for any of it, or possibly help with any of it?
Here is an article on the "MS Personality," which also discusses when a psychiatric evaluation might help and be in order:
http://findarticles.com/p/articles/mi_qa3939/is_200008/ai_n8928332
Part of the answer lies in how alone you feel. Have you considered a support group for people who have family members with MS? Here's a site that helps patients and caregivers share their experiences:
http://www.healthcentral.com/multiple-sclerosis/connect.html
And a blogger who writes exclusively about MS caregiving:
http://www.mscaregiver.com/
and here's a page of blogs she's written over time about the need for the caregiver to take care of him or herself:
http://www.mscaregiver.com/category/caring-for-yourself/
and here's a page from the National MS Society that discusses MS and caregivers and offers resource lists:
http://www.nationalmssociety.org/living-with-multiple-sclerosis/relation...
There is a magazine called Real Living with Multiple Sclerosis. I wish they had a website, but the magazine itself looks like it might be something you'd be interested in "on how to cope with the clinical and personal consequences of this disease." Here's a subscription link through Amazon:
http://www.amazon.com/Real-Living-With-Multiple-Sclerosis/dp/B0000C4CY1/...
Bnet does reprint articles from the magazine; by clicking through the archives, you can find lots of different topics regarding the disease:
http://findarticles.com/p/articles/mi_qa3939
I hope that we hear from others who have walked this path and can share their experiences. In the meantime, don't beat up on yourself. Try to decide what might help your situation -- some respite care? some more support? -- or whether your husband's lack of ability to be a good spouse to you is something you truly can't bear.
If you are at the end of your rope and are deciding to leave, perhaps offer an alternative: either separation or counseling.
You are in a tough position as an MS caregiver. Please take the time to figure out what you need for you, and then see if a first step occurs to you. If you need help finding an active support group, let us know where you are and we'll find you one. Until then, take care, and let us know how you're doing.
January 8, 2009 - 11:35amI am going to tell my story in hopes of helping just one person or maybe myself. This is the story of two teenagers that fell in love on a ball field back in 1979. It was early fall and I had graduated high school and she just began her senior year. It was a awesome day and I was tossing slow pitches to a girl whose breasts left little room to throw a strike. She was petite and beautiful wearing a mint green tank top and a paisley wrap around skirt. I knew her but was surprised she was at the plate seeing how she was known to be deeply into a bible group called the way. As for me I was a well known hockey player in town with a bad boy rep and attracted girls I'll call rebels. Somehow her and I ended up alone in right field having a deep discussion about life,love,marriage and kids.I always knew I could win a girls heart when they realized I was also soft and sensitive but this day and moment was gonna change my whole life. I swear to all that is holy I felt the hand of a angel on my shoulder and a whisper in my ear. I heard or felt a voice tell me here she is, the one meant to be by your side. Wake up! don't blow this anyways I had a hot girl and this chicks to pure to risk being with a guy like me. Yeah of course I got the girl but what's important here is my memory of that day. It was as close as I can call a religious expierence. I knew then how one might feel upon reaching the top of Everest or being first to set foot on the moon. A few months later I was in a car being driven at 100mph by a close friend that hit a solid granite wall. Four of us took that ride but I was the sole survior. I was badly injured but not lucky enough to be knocked out. I wish I was spared seeing and feeling death and the guilt and loneliness that still keeps me awake nights. In all that was so bad there she was at my bedside everyday and she always made me feel safe. We got married in 1983 and had more than most our ages. Hard work and some insurance money I got helped, but 67,000 was'nt exactly a fair price to take the ride I did.Well to shorten this up I'll say friends looked at us like John and Yoko and we had true love and a boy and girl. In 1997 I got sick, no warning just pain and fear. Turned out my pancreas slowly stopped working properly due to internal injury from the car accident. It took 17 yrs to almost kill me but who knew back then. I was told I had permanent nerve damage and would never improve plus become diabetic. For six years I tried any thing except voodoo to relieve the pain. I spent those years on a heavy and ever increasing regiment of morphine. My wife was always by my side but sometimes I needed her to watch my back.I still feel her pain, she tried not to show it but she has eyes like a puppy or small child, you know when they're sad. In 2003 I could no longer work and kept getting other ailments. Eventually we had to sell our main home, then the cottage and boat plus our way of life. Waiting for SSI to be awarded took 4 years and that was a killer. We moved into my sisters house to cut costs and wait out SSI. I never knew it was the begining of the end, she never talked to me about how she felt. Looking back I feel she lost respect for me as a man more than not loving me anymore. She was working two jobs it was hard on her but I did'nt plan this out so I could watch reruns all day. Then one day she never came home neither did my son. No reason, no kiss good bye not even a I'm sorry. I was left alone after 29 yrs without income, transportation and soon a place to live.All she has is anger towards me for the way things turned out.I'm,not exactly pleased either we both lost it all. However I'm still the one in pain with scars and a broken heart.The truth is in a way I can't blame her for wanting more out of life but did she have to be so cruel.
December 3, 2010 - 11:44pm