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How can I move on with my life without hurting my disabled husband?

81 answers | Last updated: Aug 31, 2015
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An anonymous caregiver asked...

My husband became disabled 8 years ago with transverse myelitis and was partially paralyzed from the waist down. He has issues with bladder, bowel, sex, mobility (legs & spine), pain etc. He had back problems prior to this and surgeries. My problem is I cared for him 24/7 for approximately the first 3 years and for the past 5 years he has no interest in me at all. There is no coming to bed, no intimacy, I have to think for both of us because most of the time he just isn't mentally with it, I think due to the medication. I feel so lonely and don't want to have an affair, but I have tried everything and I do not want to spend the rest of my life like this and the guilt is what kills me. We have been married for 25 years and had 4 great children who are now grown and it is just him and I and I am extremely lonely. Any suggestions on how I can move on with my life without hurting him.

 

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ljkrajcik answered...

Thank you. I have confided in a friend but they feel after 25 years I should stay in the marriage as he was a good man, but I am so lonely. He was a great husband and father, but that is the thing "was". Adult daycare will not help as he doesn't need any assistance now but he just isn't the guy I married. I have thought of counseling and suggested it to my husband and I don't think it will help because I have tried everything and he doesn't seem willing. I don't know how to get feelings back that I no longer have, they are all gone and counseling won't bring them back.

 

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ljkrajcik answered...

Thank you. I have confided in a friend but they feel after 25 years I should stay in the marriage as he was a good man, but I am so lonely. He was a great husband and father, but that is the thing "was". Adult daycare will not help as he doesn't need any assistance now but he just isn't the guy I married. I have thought of counseling and suggested it to my husband and I don't think it will help because I have tried everything and he doesn't seem willing. I don't know how to get feelings back that I no longer have, they are all gone and counseling won't bring them back.

 

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An anonymous caregiver answered...

Your husband sounds depressed too. I would push the counseling suggestion again. Or what about group therapy with other individuals in the same boat. And you need to find a support group so you won't feel so lonely, even if your husband can't be convinced to get help. Help yourself. Find some friends and plan a monthly outing, dinner or a movie. What about a taking a class in something you like to do? You can hire someone to come in and watch your husband if he can't be left alone. and what about your kids? Do they live near by? They can help out too. Start with little changes, don't try and change things all at once.

 

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An anonymous caregiver answered...

I am curious, as I am in a very similar situation, did you stay? how are things working out for you? My husband & I have been married for 11 years; it's been 5 years since his stroke & 1/2 our marriage. Except there is no marriage anymore. He is a man-child and I take care of him. (I also took care of my severely ill, bed-ridden mother for 2 1/2 years until her passing this past Sept) I am chronically depressed, have chronic anxiety/panic disorder. I'm fatigued, don't sleep, the list goes on. I am 52, he is 45...i'm afraid of having a stroke or heart attack. I don't have anyone to help me. I, too am sick, but had to stop treatment due to not being able to tolerate the side effects...suicidal tendencies. I am currently in counseling. I don't want to hurt my husband, I could not live with myself, yet I hurt every second of every day. I'm burned out, so so burned out. I want to go on with my life while I'm still alive & am able to. I don't know what to do. I don't know how to go on.

 

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ljkrajcik answered...

I am so sorry. Yes, I have stayed with him because of the guilt I feel every time I think of leaving. Maybe in the future, but I am not ready to make the move. He is 57, I am 47 and like you there is no marriage, but I don't want to hurt him as he was a fantastic husband and father for 17 years but the last 8 years it has been like being a parent again. It is a very tough situation and no support that I could find online and counselors usually try to keep the marriage together that is why I chose not to go to counseling. I have a friend who I could talk to and he got me through the first several years. He was married so of course he told me I should stay, looking back, still not sure if I made the right decision.

I think if you are ill too, you need to start thinking of your health and getting other treatment because if you are not well, there is no way you will be able to take care of him or anyone else, or be able to go on with your future. I didn't have anyone to help me either and I know how burned out you are and I had 2 kids 9 & 16 when he got sick and I know where you are with it because I had no financial help anymore (took 18 months for disability) so I worked 60 hours a week to support him and the 2 kids, no sleep, very little food, weight loss, anxiety, depression and nobody to lean on for support or help while I just could have 30 minutes to take a breath. This went on for about 3 or so years until he could finally do some things for himself, but he still relies on my for a lot due to physical disability and the short term memory loss.

See if you can find someone to care for him, you may have to pay someone to come into your home, but even if it is for a weekend get away, visit family or friends or just be by yourself to think. Not sure where you live but normally a warm climate weekend vacation, or go somewhere you have always wanted to go or do something you miss. You need to do something for yourself. I found just being able to take a shower and having 15 minutes to myself gave me the 2nd wind I needed to keep going. I also had my children and I kept them laughing and in activities so they kept me going too.

I always thought marriage was forever and affairs were never in my mind, but looking at the situation, what do we do? I don't want to hurt my husband either, but I don't want to feel this loneliness/depression etc. We are not old and have many more years that we should be able to enjoy.

I am at the point where I just want companionship, intimacy, having a good time again, enjoying family, with someone I can carry on a conversation with and laugh, but I do not want to leave my husband as he has been a great man so I would need to have an affair, which I am totally against too, plus there are so many crazy people and diseases out there, I still question is it worth it. My entire thinking has changed and I am not looking for love again because I don't want my heart ripped out for any reason.

So I am still in limbo as far as a decision, but I deal with it day to day and if something happens it happens, I can't make future plans at this point. I work and take care of the house and we basically stay home by ourselves.

Good Luck, let me know what you decide, it is tough as it seems like it will never end. I always go day by day, and I was told that we are only given as much as we can handle. I am not sure why we were chosen but we have been and everything happens for a reason and I haven't figured out the reasons yet either and maybe someday I will have answers to both of these.

 

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An anonymous caregiver answered...

we are living parallel lives, except for the children. i have an adult daughter, who currently lives with us. she is wonderful with him and has often times saved me, however she is a young woman with a job & friends & a lot of life to live as she should.

we also waited 18 months for his disability, needless to say, we're not exactly 'well to do'. we lost both our incomes. i am a firm believer in fidelity, but i believe there are exceptions to the rules in some cases....like these. i have a friend from my young past, i reconnected with about a year ago. we live a couple of hours away from each other now. he's in a similar situation with different circumstances. we get together every 2-3 months. it's wonderful just to feel a hug or a kiss or in my case, have a conversation. i feel sad when he leaves, but it also gives me something to look forward to. this way works right now...we speak online everyday. he's been very supportive and an amazing friend and the distance between us is okay. makes it kind of special. i know that i want to go on with my life, i can't live like this anymore. i also know that i could never live with myself for walking out on him. time will tell...

in the meantime i'm going to get my meds in order. made an appt with a new neurologist for him; hoping to get him in an outpatient adult day program for stroke.

thank you for answering. i really thought i was alone; it's a shame that any of us are in this situation... hey, good luck to you, no matter what you decide. i'm sure i'll be around if you ever want to talk.

 

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ljkrajcik answered...

Good luck to you too, it sounds like we do think somewhat alike and we are not alone and there are probably many others out there that are in the same circumstances. Glad you are going to get yourself in order medically and if he is in an adult day program, it will give you the little extra time that you need. Our children do see what we live with and I have 1 that says to leave, the other says stay and I don't want to hurt my children either. Sounds like you have a friend like mine, even every 2-3 months and talking daily to someone else is a big help and the hug/kiss is all we look for, just to know there is someone who cares. My friend is the same way, very understanding and a very big part of my life, if it wasn't for him I know I would have left many years ago.

Take care and go day by day and hopefully things will get better.

 

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An anonymous caregiver answered...

I know that fidelity is a law of marriage, but when the marriage you agreed to goes away, and the only thing holding you there is obligation, then I think the rules change. My husband had stroke the second year we were married, he has since had two more. It leaves his just damaged enough each time to have to start over. We have been married nine years now and each of us has kids from previous marriages. His kids want me to stay, mostly so they don't have to change their lives to help him, and mine want me to leave, because they see the unfairness of the entire situation. The truth is I would never, in a million years, agree to marry the man that I have ended up married to. After six years of one thing after another, I have decided I need to have an outlet, a "friend" who understands the situation and is not going to push for a relationship. (like I would jump off that bridge again). It can't be wrong to have our needs met when everything that made our marriage a partnership has been ripped away. The million things that you fell in love with about your spouse are gone and you're the one that is long-suffering. I tried this for 6 years and no thank you to anymore. I go out of my way to plan one vacation a year without any family and make it a point to meet my "friend" every few months. I sleep just fine without any guilt, I feel like a woman again and I don't resent each and every time I pull in the driveway. I don't consider it cheating, he is not the man I married, he can't even remember dating me, our special events, or our wedding. I do have guilt that I didn't realize it sooner and tormented myself over someone elses perception of wifely duties, and that I hurt my own health in the process. I may not stay forever, but I find it easier to stay for now. I love my "friend" but I have learned a lot about marriage and am not signing on for this again with anyone!

 

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An anonymous caregiver answered...

I married my husband when I was 18, and before our second anniversary he became disabled in an accident. He nearly did not live. Months in the hospital and years of physical therapy restored him to a semi-independent state. Over the years he has become intolerable. He is angry and rude. He doesn't seem to care for others' feelings. He says irrational things. His worsening state is mostly because his health has deteriorated and he has become less able-bodied. On the other hand, he still, on occasion, has a sense of humor. He is still capable of love although he mostly shows these positive feelings toward our grown children/grandchildren. And he is still human even though he acts the demon at times. We have been married 33 years now. I have thought of leaving but the guilt got me, too. There is no physical contact (for the last few years), although I am as much to blame as he is because his overall attitude makes me angry then I don't want to be near him. Even though this post is about marriage, I believe it is more about the attitude that we as caretakers take toward our situations. I frequently try to view our situation objectively. I put myself in my husband's place. The anger turns to compassion and I am capable of being a more understanding person. I am glad I have stayed. I believe I am strong enough and smart enough to see through my husband's behavior. I can often (not always) let his comments and attitudes roll off of me. We get along fine when I don't react, because when I react negatively, it's like fueling a fire. I realize that he doesn't have proper coping skills, but who can cope properly when thrown into such a nasty situation? I make sure that my husband has plenty of company by inviting people over so he has someone to talk to besides me. I make sure that he still feels like an important part of the family. I fill my life with family, friends, a career that I love, and prayer. And I feel good about myself for my decision. Each person has to come to his/her own terms with decisions made about staying with a disabled and difficult spouse. I sympathize with each of you and hope for the best in your situations. As for me, I won't leave. The misfortunes were flung at my husband--he didn't deserve them, and I married him for better or worse--we just got a bad deal and we will deal together even without the typical and expected marriage arrangement.

 

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tiredguy answered...

This is going to be both my opinion and a question. My wife and I have been married over 30 years. I knew at the 8 year point that I wanted out. My wife is and has been mean, controlling and insulting to both me and our 5 children. I planned to divorce her after our children were adults and out on their own. Well my plan got screwed up because she because she became ill with ms. She has been on various depression medications for years with little to show for it. She is totally disabled and bedridden. I have spent the last 20+ years working, taking care of our children and her. Our children are all adults now and refused to spend any more time with their mother than they have to. They have each at various times told me to divorce her and leave. Recently they told me that they were worried about my health. They told me that if I didn't divorce her, I should at least get a girlfriend. They know that I am miserable in this situation. I have never looked for any action on the side, but I have to say that for the last few years I am constantly thinking about it. Some "Experts" have suggested that I put her in a care facility and move on with my life. Good idea, but I am not a wealty person and I cannot afford a care facility for her. So after taking everything into consideration I beleive that i'm now ready to look for someone on the side. Some people may think that i'm a scumbag, but I really don't care anymore. I'm going to start looking out for my mental and physical health and I think you should do the same.

 

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ljkrajcik answered...

Your spouse is totally disabled and bedridden and has been for 20+ years in which you have been caring for her. I think under those circumstances you are not considered a scumbag, just someone who has been lonely for a long time. I understand the loneliness as our children are grown too and one wants me to stay the other says leave. We have been married 28 years, but my spouse is not bedridden, but because of the disability has chosen to avoid contact, avoids helping me make decisions or do anything he is capable of doing. He just makes himself dependent on me. Good luck because you have to do what is best for you and it sounds like you are ready for companionship.

 

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An anonymous caregiver answered...

I am also in a similar situation. I have been married to my husband a little over 9 years now. 5 &1/2 years ago he injured his lower back on the job and is now unemployed. I took on the role of the breadwinner and am now working full time to support our 2 children plus him. To be quite honest, I feel like I am slowly withering away to nothing. We are both still young (35 & 32) and I feel like he isn't the man I want to be married to anymore. I have never been depressed in my life and recently was put on an antidepressant because of severe fatigue. I thought it was brought on by too much stress, but the Dr stressed that it must be depression. It seems to be helping some. I feel more energy, but the situation is still the same.
Here is some of what I am dealing with, and maybe just talking about it will make me feel better. A typical day for me goes a little like this: I wake up in the morning at 6:15, get ready for work, wake the kids up, get them ready for daycare, and then head out the door at around 7:30. Meanwhile my husband is on his way to bed (he is up all night long). According to the doctors, he is unable to care for our children (3 and 5yrs), so they go to daycare every day. I finish my day at work, get the kids, and come home and proceed to make dinner, clean up, etc. Meanwhile my husband complains of not being able to sleep during the day (too many phone calls, too much pain, meds make him tired etc) so he goes back to bed. Therefore I keep the kids until their bedtime at 9pm. I usually go to bed at 10 so I usually get an hour or so of "me time". I feel like I never see my husband anymore and when I do see him, he's always grouchy. Always yelling at me and the kids and slamming things and usually breaking things in the process. I have had to replace several things he has broken and we have some holes in the walls where he has taken out his anger (usually about the kids being "too loud"). He blames it on his anxiety. He spends all (and I mean all) of his waking hours on the computer playing video games or watching videos/movies. I believe he waits until after I go to work to get a few hours of sleep, then wakes up to play on his computer as much as he can, then goes back to sleep when I get home with the kids just to wake up again after their bed time. Not only do I have to deal with this, he begs me for intimite time all the time and after the way he treats me and his attitude, that is the last thing I ever want. Not to mention the fact that our sex is absolutely not satisfying at all to me physically or emotionally. I hate feeling this way because he isn't like this all the time. Sometimes he will help with dishes and cooking and occasionally the laundry. Plus he helps with the kids at times when they're not annoying him so I feel guilty for my bitterness towards him. I feel he is fully capable of making himself better and more self reliant, but he doesn't. He won't be able to support himself on his own, so it only kindles the fire in my guilt for wanting to take the kids and leave. Anyways, thanks for letting me rant on this forum. It's difficult for me to see others struggling like I am because I know what it feels like and I truely feel for you.

 

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f*$$cancer answered...

I am so relieved to read these posts to know I'm not alone!s my husband got hurt at work 7 yrs ago and has degenative disk disease. We have two kids and I do everyrhing! I get so frusterated getting told he can't help with anything but he can do whatever he wants if it's one of his hobbies! Hell I was out doing the shopping and running errands one week after my c-section. Because he was to miserable! He has turned into a mean nasty person especially to our oldest! He's verbally abusive to us both, and criticizes everything we do! Since he was injured he hasn't done one load of laundry or dishes, doesn't clean, or cook! I feel like he is a child and not a spouse! Yet he will stand for hours to tie feathers! I am lost, I survivedd breast cancer, went to every doctor by myself cause he was in to much pain! Now I feel like I'm wasting my second chance cause we can never do anything because it will cause him to much pain and we are barely surviving financially, I'm so depressed because the cancer might be back, I'm so lost!

 

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Caring Community answered...

Hello "f*$$cancer," Sorry to hear about the challenging situation you are facing with your loved one. You may consider joining a cancer support group in your area or calling a cancer hotline to speak to someone about your situation:

Depression is a serious health problem that requires attention and care from a doctor or licensed medical professional offline. This is not a problem that can be resolved in an online forum or in the comments section of articles on our website. Please immediately seek help by calling 911 or a toll-free crisis hotline, such as 1-800-784-2433 or 1-800-273-8255.

You may also consider reaching out to your local Area Agency on Aging to receive information and referrals on free and inexpensive services locally available to you and your loved one: https://www.caring.com/local/area-agency-on-aging

 

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An anonymous caregiver answered...

It's been somewhat helpful reading through these. My sister has been married for 25 years and her husband has had medical problems for most of that time, and had been disabled for more than 10. His family "doesn't believe" in counseling, though it is clear he is depressed. My sister has been getting counseling for many years, but he is getting harder to deal with.

He can be a very nice guy, but even before the illnesses he had issues with anger when he doesn't get his way. He holds grudges. He gets so much of this from his family. He hasn't talked to his sister in years and now he and his mother are not talking to each other due to a stupid disagreement.

My sister got a part-time job this past year which helped make her feel useful, but quit it due to all the stress of trying to work around his numerous doctor appointments. He is the classic example of, "if something can go wrong it will" when it comes to his health.

And my sister is so determined to prove that she married for life and is the perfect wife that she's running herself into the ground. She just told me this week that they're upside-down on their mortgage, they're worried they'll lose the house, but they also have massive credit card debt because he took out some additional cards in his name and went on shopping sprees! While that was hopefully before they realized what trouble they were into with the house, he still was being financially reckless when they're on a fixed income. About 20 years ago they already declared bankruptcy, and I wonder if they're headed for that again.

She had a hard time telling me about the money trouble, because she feels stupid for letting it happen. About the spending spree she said, "I couldn't stop him."

I really wish she'd take a firm stand and say, "shape up or I'm leaving!" But I don't know where she'd go. She's barely worked in years and doesn't really want to move in with our mother. She does have tons of friends, our mother and their kids where she lives, but I live 1200 miles away.

And to make it even worse, their daughter has inherited her father's lack of financial sense. He has never once apologized for anything, and she likewise gets very stubborn and tries to do the same. She has said before, "I'm never right," because of course he's never wrong!

So I'm wondering what I should do. Do I just listen to her vent as her life goes down the toilet? Do I try to offer advice? Do I tell her that she should think about whether or not her husband is being a bit controlling and passive/aggressive? She's made it very difficult for me to know what to say, because she's right to a point. I don't think she's stupid, however, as much as she's codependent. She's the martyr, and I almost think she enjoys that sometimes, like that gives her something she can feel good about.

 

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An anonymous caregiver answered...

Hello, and I am glad I have found someone else out there with a similiar moral dilema to mine. My husband became disabled 4 years ago with TBI, and what you have written really hit home for me. We are married 27 years, and also have 4 children and life is not what I had planned for. My husband has now become more of a child to me, and there also is no more marriage here. My family and friends say so easily...just move on with your life, but that is easier said than done. I feel guilt and responsibility not to do that, but at the same time am losing my mind with lonliness and it is starting to get to me. No one understands this unless they are living it. My children are very understanding of it all, but I just can't seem to separate from responsibility and what I deserve as far as happiness at this point. I wouldn't wish this situation on my worst enemy!

 

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tiredguy answered...

Since my last post here I found a website that has been very helpfull and informative about caregiving. I suggest you go to or look up the "Well Spouse Association". Also the Book "The Tough & Tender Cargiver". Both have helped me in my situation. Good luck everyone.

 

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John Work answered...

WOW, these posts are an incredible eye-opener......here I am thinking I'm alone, but, now I see that others face the challenges of loving your chronically ill spouse while feeling empty inside. I am so hurting it's hard to write this. My wife, whom I love, is always angry at me, all we do is argue. Her pain, and pain meds, and the cycle of doctors and scripts and pharmacies and insurance, all add up to a sea of frustration. I love my wife, have given every ounce of emotion and commitment and money to making things better, only that everything has gotten worse. We've lost our home, our finances are a mess,....I can't even finish writing this now

 

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An anonymous caregiver answered...

Thirty years married and nothing left of thte marriage. We have three grown chldren and very soon the last one is leaving home. I can't imagine this is all there is going to be to my life. I am 55 years old he is 61. We have both changed, over the years we were so busy raising children we lost us. I realize now that our children is the only thing that holds us together. We have nothing in common. The only thing he wants to do is sit in his recliner and watch tv. He isn't interested in having any friends or family over to socialize. When family is coming over I have to tell him he has to turn the tv down and or turn it off and actually talk to people. Most of the time I am constantly telling him to turn the television down while family is here. He turns it down for a second and then right back up. Our visiting is interrupting his television watiching. And yesm he could tape it on DVR. He just has no interest. Our kids don't know that I have to force him to be somewhat socailable while they are here. He use to work afternoons and me and the kids had friends over and had a great time. Then several years ago he went back on days and I haven't had friend since. Well, I do have a lifetime friend but she lives about 2000 miles away. The old local friends are all a thing of the past. I have no life with him. We had sex maybe twice in the last year and don't think we will ever have sex again. It use to really bother me, now I don't care. I don't want to be with him anymore. I don't want to hurt my kids either so I think at this point I need to find a way to make it bearable. I am on a anti-deppressant so I have at least stopped crying all the time. I think as long as a person has hope they have something, when hope is gone there is nothing but grief. I am just using this forum to vent and try to make myself feel better. I am sorry for all you ladies who have so much to deal with, God bless you.

 

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An anonymous caregiver answered...

Man reading these posts i fear trodding down the same road. I met a great woman just under 3 years ago and took on her child as my own. Since she moved in it has been one health problem after another, physical, mental, surgeries, pain, painkillers. A back condition that never seems to go away. I have struggled with doing everything at times, and with her everlasting depression the pain flares up and she cant get out of bed and with the meds she cant really drink or hike or walk really much more than a few blocks then she has to go to bed. Im in my mid 30s and i love to live life... I have hung in there to help her through but just as things would get better some other thing comes up or the back pain flares up again. She would love to be intimate but without the rest its just not interesting anymore to me, i come home to a disaster of a house with 5 loads of laundry and 2 dishwasher loads of dishes and clutter all over the place and she is sleeping due to the pain and meds and shes gained 80 pounds on her very small frame.

I long for female companionship that is fun again, where every second topic isnt about pain or meds or sleep or rest. Im craving other women pretty bad i have cheated a few times and couldnt really help it just for release and really wish i didnt feel the need. I do love her and hope things can get to normal but the past 2.5 years i have been a caregiver and at times feel like a single dad of a great kid thats not even mine.

Id feel bqd to just leave, seeing as there are medical explanations for everything and she has been receiving treatment, plus my relationship with the kid...

I just wish she would finally get better. She wants to get married but i cant until she is better i have a very hard time with the idea of "locking in" when we havent even lived together a day where she has been normal, healthy, and a fully contributing member of the household -- ihavent even been able to find out what that would be like yet.

 

margo-z answered...

To "it was me 73" I believe communication is important. Before you throw away the big picture for only one part of your relationship, it is a good idea to be a true partner. Have you tried telling your wife you want to work on something different in the bedroom that will benefit both of you? I waited until late in life to marry. Due to life events outside our control, my husband became very depressed. We separated and are now healing, trying to reconcile. Sex was never a problem for us, but during this reconciliation, we have learned that it could have been even more exciting if we had only communicated more about it and everything else. He is in therapy and it's been great to finally talk about our needs instead of letting life happen "naturally". There's something about discussing such a natural act that seems unnatural to many of us. Your wife may just be unaware of all the possibilities. You could also try marriage counseling. This would probably be something easy to fix, but you might also find that the big picture has a problem as well. Analyze and communicate as much as possible before taking a step you might regret later. Consider the great possibility that if communicating about this is uncomfortable and something you would rather avoid, you might not ask the right questions before you begin the next relationship and get a situation that makes you realize that this one was nearly perfect in comparison.

 

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Alone&Tired answered...

I am so happy to know I am not ALONE! I have been married for 14 years and have two children 12 and 8. My marriage has been great most of the 14 years. My husband was a wonderful husband and father; however he has been ill for a year now. It has been the hardest year of our lives emotionally and financially. I have an extremely demanding job and it is difficult for me to care for him, my children and still work a full time job. We need my income, so I have no choice but to work, but I cannot stand what his illness is doing to our family, to me and to our children. I have lost my husband and my children have lost their father. I see the disappointment in my kids eyes and I feel their pain because I feel the same pain. I am becoming a bitter and cold person. It is my way of dealing with things and I truly hate the person I have become. I often want to leave and never look back, but I am not sure if this would be good for the kids. I am afraid this would hurt them worse than living here with a father that can no longer actively participate in their lives and an extremely unhappy and stressed out mother. I feel my kids are often on their own. My husband is here most of the time with them but he has a hard time taking care of himself let alone the kids. I have little help and struggle every day. I am worn down. I am 38 yrs old and feel like I am 50. If I leave I worry what will happen to my husband. He has no money coming in and no one to help out. I feel like most of our friends no longer come around. Who wants to be around someone that is sick all the time and cannot go or do anything. I have become a single parent, but I am not free to find happiness. I am stuck with a man that I no longer know. We do not have a marriage any longer. We barely talk and we are no longer intimate. He is capable, but it takes him so long to recover after that he is unwilling. We no longer have a savings. All savings is gone and I am finding it difficult to keep up with his medical needs as well as day to day expenses. I hate living like this. I no longer have fun. I am trying the best I can but it is not enough. I do not know how much more I can take. I see happy people and I get upset. I see couples being affectionate and I cry. I so badly want to have a "normal" conversation with a man. I want to do simple things, like go to a movie, dinner, walk hand in hand down the street. Have someone go to my son's hockey and football games with to cheer him on. Go to my daughter's band concerts and tell her how proud we are of her. Instead we are alone. My children have me and I have them, but we want more. I want a husband and they want a dad. I miss the simple things so much. I know he does too, but it is so hard! Life needs to go on, but it is the most difficult thing to do when you feel empty and alone. I am so happy that I have found this board. I wish everyone on here the very best!

 

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An anonymous caregiver answered...

It scares me, after reading all these posts, is this how my husband feels? I'm the one who's disabled, after 23 yrs. of Healthcare, I now, am no longer able to work. I had 2 failed back surgeries 1ST one in Dec.08 the 2ND Dec.09 I did work for 6 months between surgeries, after the 2ND I couldn't barely get to 4 hrs. a day. I worked endoscopy (tech) & in between each procedure, I'd cry, then put on the happy face, & do the next, I couldn't continue this way, my job wasn't able to keep those hrs. I totally get that, so I had to stop working, from 2010 -2012 I went through all the disability steps, I still to this day, can't believe it, here's the flip side, I do what I can, to the best of my ability, I believe my husband thought he was getting a house wife, I tell him if that where the case, I'd still be working full time. He doesn't have to care for me 100%. financially, yes, but fr. going to very independent women who helped raise my step-son, to being financially dependent, shouldn't be the worse thing in the world, yet, I feel so alone, I sympathies with what your all saying, but what about us? How we feel, we don't like not having our "normal" lives, I get those who have to be care giving in every way, I do what I can & what my body allows, I push myself to have fun, I pay, I push to pls him & me in the bedroom, I pay, if I clean I have to recline after 20 min. it's a constant circle of getting know where, I know he wants to live, I go out with him, until I can't, it's never enough, & I can't continue hurting myself to save what's left of this marrige, what about the disabled person, we hate this more than you realize, what I wouldn't give to have work again, feeling like I matter, I know I'm depressed, & in pain 24/7. I wouldn't wish this on my worst enemy, with what I can do? why isn't it enough? I know it's not what it was, in all aspects of our marriage, but that's what ya do, when there's changes, the changes happen to both husband and or wife. When my husband had gotten primary placement of his son, I was there helping to raise him fr. 8 till now, he'll be 18, I never had children of my own. since my surgeries, & my changes, I've never felt more left out, & it hurts, I didn't ask for this life at 41, & thank God I can do for myself, after a 3 level fusion I'm thankful that I can walk! not far, but I can! So why & how do have them understand, I know their sick of my pain, & they don't really understand, & Maybe it is me, emotionally, & I don't realize? I don't know, just confused, lonely, & wanting my family back!! It really does go both ways, I know how I feel from this side, I have made sacrifices, I guess this is why I'm confused, maybe their being selfish, On my bad days, it's really bad, so he'll go to the bar, well that's getting old, so this is where I thought the similarities of how we feel being on the op piste sides, I am glad I found this site, it makes me realize, I have to stop complaining so much because I'm pushing him away, but now with him gone working all day & going to the bar afterwards, well sometimes I feel I have to, because that's not acceptable behavior after so long, I am still a women with needs, when it becomes a chore, that hurts, my levels fr L3 to S1 have so much affects on our lower bodily functions, yes, it takes longer, sorry, I'm not able to have an orgasm within 5 min. He blames the meds, I just wish he was more understanding, compassionate, & patient!!

 

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pdbowers answered...

I recently lost my partner of 23 years after a series of strokes. I myself have mild cerebral palsy. The last 8 years of my partners life were spent with him being unable to walk or talk, but we could still communicate, usually with yes or no questions and facial expressions. I had worked full time and took care of my partner up until the last two years of his life. After working for over 30 years, I medically retired due to mobility issues, and exhaustion. It wasnt perfect all the time, and intimacy was in the form of true love and affection for each other. There were times I thought about leaving but knew that if I did the guilt would have killed me. I also deeply loved my partner, and I knew he loved me. Over the years during his illness, I thought I had mentally prepared myself for his passing. It turns out his death was devastating and heartbreaking, and I will always love him and miss him. A part of me has died, and today, almost 5 months since his passing, I am trying to get to know myself again. No one understands what a caregiver endures unless it has happened to them. If I could have Mike back today, I would do it, but would Mike want to come back as he was? I doubt it, and I am happy he is free from a body he was trapped in. Will I ever have another relationship, or will I even want one? I dont think so. Today my goal is to live one day at a time, be kind, and one day be reunited with my loved ones in Heaven. Prayer is something I do daily now. Caregivers have a very rough road. While it was one of the most satisfying things I have ever done in my life, at this point, would I do it again? Honestly, the answer would have to be "no". I am here to lend an ear or word of encouragement if anyone is interested.

 

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An anonymous caregiver answered...

My husband and I are both 45 years old and have been married 21 years. He began having neurological problems about 6 or 7 years into our marriage, but could work and we had a decent relationship.

We could not conceive children so we adopted a baby. Less than a year later he started having small strokes. His fatigue and health issues began to overpower his ability to be husband and father. Five years ago he had the stroke that disabled him, and now he cannot walk, cannot talk, has to be fed through a stomach tube, and is mostly bedridden. We adopted another child during this time as well.

I have been his caregiver for the last four years, with his physical and medical needs increasing more and more. He is totally like a child to me, and we have no relationship at all. We can't even have a conversation, and he can do nothing to help care for our 8 and 2 year old. In fact, he mostly shows anger toward our 8 year old, which breaks her heart because she loves him and worries so much about him.

He is in a separate bedroom in a hospital bed, and wears diapers due to bladder and bowel incontinence. He has rotten breath due to poor dental care and his body odor is horrible. Intimacy was gone about 9 years ago, due to his physical problems and impotence. Fortunately he got on disability right away so financially we have been blessed.

I have been working from home for the last year. I homeschool our 8 year old. My husband's parents come a few hours a week to visit with him. They show no obligation to help care for their son (he's their only child and they are financially well to do), or to give me a day every week to just get away, even though I've asked them several times. I have NO help caring for him, and he can't qualify financially for community programs that would help. He can do nothing for himself, including eating and toileting. I have to stay home with him constantly, although I do go grocery shopping and run quick errands and tell him to stay in bed while I'm gone. We get no visitors because family and friends just don't seem to know how to deal with our situation. We are all stuck at home by ourselves most of the time.

I would have never married my husband in the situation he is in now. I struggle to understand why God keeps him alive, miserable in his body. I struggle to understand how and why I am in this situation. Our 8 year old is really suffering because he is so hateful toward her, but she sees how overwhelmed I am caring for him and the high level of stress I am under. She also constantly worries that he is going to die. I am giving of myself all day long, caring for the chilren, feeding my husband, helping him in the bathroom all day long, working for an employer, taking care of finances, home and car maintenance, arranging for medical supplies, medications, and washing pee soaked clothes and bed covers. I go to bed lonely every night! I feel such a strong commitment to the wedding vows, but an affair is so tempting! I miss having a man to talk to and share life with and have a romantic dinner with and cuddle with in bed. It's heartbreaking. I recently realized that lonliness in a marriage with a chronically ill spouse is probably the worst kind of lonliness. There is really no way out of it, and no way to have your emotional and physical needs met that would help you to be a better caregiver. I have made the decision that if my husband's health deteriorates much more I will begin the process of admitting him to a skilled nursing facility, which Medicaid will assist with paying for in our state. It's not worth sacrificing my health and the emotional health of two innocent young children to try to maintain his care in our home. Only God is getting me through this, even though it's hard to feel His presence many days.

 

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Trapped3 answered...

Thankgod i have finally found some women who know what i am going through.My husband who is 41 & im 36 has been disabled for 4.5yrs we have 3 children 16(from a previous relationship)And we have two together 10 & 6.5yrs.We have been married just over 10 yrs but i am extremly unhappy & have been since he came home from hospital he has a rare cond called Guillan Baree syndrome he has no sensory funtion he can't feel anything from his lips to his toes,but is hyper sensitive in some areas.Before this he had never been sick in his life,he went from healthy one minute to being in a wheelchair the next yes its a horrible thing and i do take responsibility for my unhappiness,he was in hospital for 4mths the 1st 2 mths i mourned him & missed him,but after that i got used to doing my own thing & doing everything for my kids who were only 12,5 & 2.5yrs and then when he came home a totally different person & everything had changed,i haven't handled it & i can't.I did try councelling but that didn't work & talking to him never worked all he can say is"I m just the worse person in the world"And so i don't bother now,i just don't talk to him.I was a stay at home mum b4 his ilness,but was just about to start a course but had to cancel it because i didnt know what to expect when he came home.So for the 1st 3yrs he did nothing much,i feel he should of doing more therapy because if their was a chance he could walk again he had to keep his muscles moving,but no all he did for 3yrs was sit and watch tv,be on the internet or read a book,so i weny from having him at work and having my space to having him home 24hrs 7 days a week,so i ended up saying he needed to go out 1 day a week,just so i could be at home & have some me time at home & maybe have a friend over.He didn't like it at first but he did it.My husband doesn;t have any good friends either,where as i have lots of friends & always have,i don't know what i would do without my friends!!!!And as for sex well he can do it but due to his condition he can't feel anything so the connection has gone & its not like it was,so i rather not & no longer interested in being intimate with him ever.He finally went to university last yr as he his very smart,but it seems like they are on holidays more than being at uni,so i never have friends over & i can't even have a private ph call because he is always home & only goes out one day a week.He doesnt go back to uni till march & he finished in November.We have been on a few holidays,but i organise everything,never helps me & he is the one i have get wheel chair accesibility.I understand his condition is very frustrating,but he stresses me out he often calls himself a retard & i can't stand it he gets moody with the kids.Last year after getting very drunk he confronted me about our relationship,i told him i didn't know what i wanted well i didnt back then & when i went to bed he went of his nut yelling out horrible things,which i just ignored,but i decided to make a good go at things,well i did try but its just not there,and im only here just for my children.I came from a broken home & i don't want that for my kids,but it may just have to be that way.But im worried due to his condition if we split i would get everything & he would get nothing & i don't want that,as he was a wonderful husband b4 his ilness.The problem i have now is lack of talking to me,if the wall could answer me it probably would!!!I can talk & it can be about the kids & i don't even get a grunt out of him to show he is even listening to me & this makes my blood boil,it seems unless it involves him he doesnt care!!!I try to go away for weekends or most times im taking my 3 kids to their sporting,which he never asks to come & watch,if that was me in that chair,i wouldnt miss my kids sports for anthing!!!!I often hear him talking under his breath & i know its about me & i don't care anymore i really want out.So i'm waiting for his next drunken outburst then that will be it i have been unhappy for a good 4yrs how long can i go on.I really tried,but i love him but not like a wife should love their husband.Before this i was totally against affairs,but its getting to the point where i just want to feel intimatley with a man and not feel guilty,i've never been unfaithful but it may happen now.He has also put on alot of weight & he knows i don't like beards,so what has he done but grow a beard,so he isnt doing himself any favours.I am just so unhappy.I did finally do my course,well i did two & now have a diploma.I started working last year just a few hours a week,and i love it,but i never get asked how my day went,i just come home to someone who is always miserable & feels sorry for themselves.I wish he had some friends so he could go out but he doesnt i just feel trapped.

 

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An anonymous caregiver answered...

A situation I am afraid that I too have personally experienced. And yes after over 25 years of marriage we do now live apart. However, whilst the situations are similar everybody's relationship is different, so you cannot apply one person's scenario to another. Saying that, we are both much happier as the relationship itself had deteriorated to the degree that both of us were suffering mental health problems. We still see each other occasionally and have so much more to talk about & share because we have separate lives. Staying on good terms takes a lot of work & even sacrifice, but it does help cushion the effect for the person being left. My husband too was a good man & it took me a long long time to realise that the situation we were in was destroying our relationship & to stay would have resulted in it causing additional & permanent harm to us as individuals & to our friendship. There were no individual faults, just an impossible situation which neither of us chose to enter or be in. Ultimately, it was our friendship we decided to save rather than our marriage. I don't know whether this is any help to you, maybe just something else to consider. However, only you know the intricacies of your relationship & what you both can manage, so only you can make any decisions.

 

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hummingbirds answered...

i feel incredibly guilty alot of the time that my spouse is no longer at home since a devastating stroke. But I also think we are in a good space with each other and have survived as a marriage because I see him every day but then go home to recharge and be there for our teenager. After readiing some of these posts I am incredulous how the couples have survived together in such immensely difficult sounding circumstances. I read somewhere that caregivers have double the risk of serious illness and disease. Its not at all surprising given the stress and negative emotions involved. I always feel like i am not a good enough person as i don't do the 24 hour care but i have had a panic disorder all my life and am such a lousy coper. Reading how hard other people have it compared to me makes me feel ashamed. Ironically people say i couldn't do what you do..and all those annoying comments. Well what would they do instead?? I get time every day to be alone- even if my thoughts are still about my spouse. Everyone deserves time out every day for their sanity- i hope somehow that everyone that has posted can get that- xxx

 

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notwhatIexpected2001 answered...

WOW! I cannot believe I am not alone...which I kinda knew but never expected others to express what I'm feeling too! If my husband knew, it would devestate him. I don't want to hurt him but we don't have a marriage anymore either. We were married in 2001. He had just started having headaches. He was infertile due to birth defects so in 2004 we started fostering children. In 2006 we adopted a brother/sister and stopped fostering. In 2008 my husband (now 42) had his first TIA (small stroke). Eventually he was disagnosed with CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy) is the most common form of hereditary stroke disorder, CADASIL may start with attacks of migraine with aura or subcortical transient ischemic attacks or strokes, or mood disorders between 35 to 55 years of age. The disease progresses to subcortical dementia associated with pseudobulbar palsy and urinary incontinence. Well as the rest of you have stated, it's been all downhill from there. He is on full disability and does received SSN both for himself and our children (14 & 9) but I work full time outside of the home and have to come home and work full time there. In addition, he was always a spender before his disability and that hasn't changed. I'm afraid he's going to leave me in financial ruin. Short of separating all of our finances, I'm trying to protect myself but I worry about it all the time. My parents are deceased and my siblings and I aren't close so they're no help. His immediate family has their own health problems to deal with. His mother started have TIAs several years ago as did his grandmother. They're both declining rapidly also. My one saving grace is my job! I've been here 10 years and it's like a family. When my husband first become ill and quit working and before the SSN kicked in, everyone took up a donation for us that amounted to almost $1,000! I was overwhelmed! However, it's like he resents me for being able to work and all that entails...leaving home everyday, having friends outside of work, outside stimuli, etc. He's walks with a cane but won't go anywhere or doing anything unless he can walk or sit down once we get there. He won't utilize any assistive mobility devices (walker, wheelchair) yet complains if I don't go w/ him to SIT! I have a bad back and sitting kills me! I'd rather be up walking around. But anyway, I have to go. Sounds like everyone here understands what the other is going through. So remember fellow caregivers, you are not alone! Deuteronomy 31:6 "Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." Pray for me as I shall pray for you all.

 

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hummingbirds answered...

hello there..i work a little bit every week and yes it is a a blessing. My spouse can only move one arm partially but my God does he make the most of the little he has. He can use an adapted computer and often email ferocious angry tirades to people. He was an angry person before so that continues. I find this so stressful as i feel we need people on our side now. He totally disagrees. Then i feel guilty given he is so very disabled. He can't speak either. Thank Goodness for this forum so very much. I feel so angry alot of the time and after a tough day yesterday-( he got angry at a shopkeeper and rammed one of his display stands with his power chair)-i felt so alone. Started churning over in my mind how not one of his family has emailed or texted me to say hi or ask how things are. I am sure that its the same with lots of us. Its been 2 years now and everyone goes back to their own lives and troubles. I hate having to ring someone and be negative about life. Who needs to listen to that? - apart from this blessed forum! How do other people process their anger?

 

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An anonymous caregiver answered...

I have been married for 24 years and we have a 23 y/o daughter who just graduated from college and a 17 y/o son who has one more year of high school to finish. My husband is an alcoholic that attempted suicide with a shot gun to the face and miraculously survived. He spent 5 months in the local hospital and then was transferred to the VA. He is totally blind, has a trach and feeding tube, can consume pureed foods and can walk but depends mostly on someone to push him in a wheelchair. He can converse with you which is a miracle in itself thanks to an amazing plastic surgeon. When he was first aware of his situation he really wasn't that upset about the fact that he was blind. He has some frontal lobe damage from the blast but besides his severely disfigured face he can carry on an intelligent conversation with you for the most part. He is insistent that I bring him home and I won't do it. And yes the guilt is insurmountable at times if not constantly. He has resided at the VA for almost 3 years now. He was a smoker before and about a year after he did this he started smoking again, burning holes in his clothes and the wheel chair. And he informed me that recently when he spent the evening in a hotal with his sister the night before our daughter's graduation (for traveling reasons and because I refuse to take him anywhere) that he had her put vodka in his feeding tube and "they got lit up". He is insisting on moving out of the VA and living in a trailer which would be an accident waiting to happen given the circumstances. When he does go on pass he refuses to take his medicine but he NEVER refuses the pain meds. And he knows exactly when they are due to be given. I don't know what to do except try to take care of myself and set boundaries that I can live with. The people who own the trailer refused to rent to him because of the liability which thank God for that. But then he asked me if our 17 year old son could come live with him so he wouldn't be by himself and then they "might allow him to rent" a place to live. It's just so frustrating because he intentionally did this. If it hadn't been for the miraculous EMT's and trauma team he wouldn't be alive today. And all he can say to that is that they were just doing their jobs. It just tears me up so much for him to be like that. I cannot go back to that hell and like some others here I should have left him a long time ago but was afraid of hurting his feelings, but he didn't or couldn't care enough about his family to not do something so devastating to our family. I have been told to be his guardian...ha then he will divorce me, but I don't want to do that. But I am concerned for his safety. He thinks he knows everything and that he can take care of himself but he hasn't done anything for himself except wipe his butt for the past 2 years. And expects everyone else to do for him what he wants to do. He was mad with me because I applied for social security disability when he was in a what do they call it medicated coma or something. He said I stole his money. As a rep payee I have a receipt for every penny he received and got him out of debt by paying bills for him while he was incapacitated for a year or so with that money. He just doesn't know the blessings he has received and cannot understand how much we have gone through watching him go through this trauma. He says I should be over it now. I don't know what to do but I know I am still young (44) and that he isn't going to change...moving on sounds so simple but it feels like jumping off a cliff. I think jumping off the cliff would be much easier. I have been advised to decide what to do asap and almost went straight to the lawyer's office after being told that but I sit on the fence too much. It makes my head hurt just typing this out. I stress with him living an hour away at the VA, if he were to come home I would never survive the stress from that.

 

peglegpeggy answered...

hi everyone who gives their care and time and lifestyle and their all...

what a pity i am in australia and we can't have a coffee sometime? Ill people can become egocentric..it is all about them..about their pain and struggle and I always remind myself I am glad it is not me experiencing all of that - I hope I just drop dead one day. I though work was wearing me down..there was a restructure..bullying, intimidation..I tried to fight for our jobs...but then I took redundancy - and never thought I would be just a driver..a carer..I am so tired and worn out and know I also have to find a new job and be the income earner. I am 52 and feel and look 62.

The problem with affairs is one can become attached to the feeling of love and care - I wanted to leave my out-of-control-diabetic partner and tried an affair to test the waters..how did I really feel? what was it all about? etc etc then my partner had kidney failure...a failed kidney transplant and more...8 years later..I am here..he is addicted to cannabis and refused to give up his old uni habit...it helps with pain... The affair..man..I was in love like I had never experienced! I actually loved sex! But he was also someone escaping a bad situation but..I should have known it was dead end - also he was 13 years younger than I and a new immigrant to Aust...stupid..so then I had the depression of a failed love as well as the drain of caring and working shift work (prison officer - so hard shit). So my partner has had this and that go wrong...another issue and medical problem..he keeps smoking and living in a pigsty...now his mum is 83 and cant help anymore and now I am prob going to care for her...! dammit! My own mum died as a victim of murder-suicide and was only 49 - now I am older than she was! anyway I am hoping to score another job...I will kick him up the butt and feel guilty for doing so! But you know, if I can lose 10 kilos..what the heck..I might just find a toy-boy to make me feel young for an hour or two - but now I know it is just sex - who ever it is won't care for me...doesn't want an"old lady" to look after - but far out..fellow carers .... it is nice to pretend someone is luvving U if only for an hour or two! It may just keep you going! But DON't let yourslef feel anything more than gratitude for that luvvin coz it will only be more pain...took me a couple of years to get over my affair...it was more pain than caring for an egocentric person whose first love is cannabis........

But yeah I know there is more inside of my partner...but it doesnt help if we are never told or shown we are appreciated...

..tears for U all...there is no easy solution..time

 

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peglegpeggy answered...

Today I sat at the hospital and waited all day long whilst G went to all his various appointments/specialists. I did my usual "remember how lucky U R..it's not U going thru all this". Then I recalled all this msgs here from others going thru the same.

I thought how "caring" stops being love-caring. Why do I resent him so much? It's not the illnesses but how he has dealt with them...fighting with medical staff and doctors...not listening...doing his way - the wrong way! Today I should have been applying for jobs and when I finally got home 2 jobs had been withdrawn due to the large response...

..I went into a shop last Sunday and had this wonderful chat with the shopkeeper and two female strangers...this lovely lady cried when recalling how she cared for her husband until he went into a nursing home..and the help from her family..WOW! she loved him so much...and her family loved her! I didnt recall my story..blah blah balh...but told stories of my recent work with sex offenders and Outlaw Motor Cycle Gangs....who would believe I deal with those guys and it is home that makes me miserable!

Peglegpeggy...I better toughen the ...up! as the bikers say!

 

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Lonely in Tennessee answered...

I too have a loving wonderful husband that had a stroke. He can't walk or use his left arm. He is 76 and I am 50. I've been his only caregiver for 12 years. No help at all. When I have left to get some me time it seems hubby and daughter makes it so I never want to leave again. I come home to a nightmare; House destroyed so bad it takes me two weeks to get it back right. I went on a five day cruise, and fealt refreshed and ready to care for another year. All that feel good went strait out the window. I became so depressed that I stopped doing anything but the bare minimum. I felt like a failure. I'm not the type of person that would have an affair, or at least this is what I always believed. I have noy been kissed or touched by a man in 12 years. I think about a lot now. I'm still a very attractive women at fifty, and men flirt with me when I do get out. I am seriuosly thinking about having an affair. I have even had the ONE picked out for two years now. We have talked about, but I always chicken out. We have kissed, but nothing more. I feel like I'm 13 living at home with my dad. If I leave the house for more then two hours I get the third degree. I'm always under time constraints because of the level of care he requires. Before his stroke we had a wonderful life! Post stroke he assumed the role of my dad.

I called out for hrlp more times then I can remember, but no one is willing to help me. It's like they say hey, you married him, you take care him. Sad because between the two of use we have 5 kids and 10 grandkids. He was my first husband.

What to do? I'd like to be held and loved by someone I care about. I just don't want sex, so whoever the lucky guy turns out to be will have to understand my situation. He would have to not have other girlfriends, and would def have to be tested for STD's.

Glad I found y'all as I thought I was the only one thinking like this.

 

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triedntested answered...

I am not in the same situation but as a 57 year old male and a man of the world. I would not wish to inconvenience any of my loved ones. I would want them to live their life to the full. Through reading these stories I given all my next of kin strict instructions should anything like that happen to me no not keep me at home put me away. I can understand you feelings of gilt but I believe your loved ones would feel like me and would want you to move on. Good luck to you all Stan

 

ForeverHis answered...

Hi. I am 30 yrs old & my husband is 28. We have been married only 2 & 1/2 yrs. He broke his neck in a motorcycle accident a month ago. I found this board and started reading. At first I was crying pretty bad, feeling sorry for us & worried about our future together.. then I read a couple positive posts & it made me hopeful. I am hopeful that we will come out of this thing stronger as a couple. My husband is paralyzed from the waist down. He can not swallow and he has a feeding tube right now. He was in the ICU for almost a month and then he was moved to a rehab place in the same hospital a little over a wk ago. He's breathing through a trach but he does it mostly on his own with very little help from the machine now.. Every little progress gets me so excited! I'm told he'll never walk again, but I still have hope that he will one day. I love him so much!! I hope I have the strength to love & take care of him as long as he needs me to. I hope he can have a happy life with me and our kids. I pray every day that God will give him another chance & his legs back! I was glad to find this forum because it shows me life goes on after something like this! I hope I can make his worth living!

 

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40yearsandholding answered...

The saying "misery seeks company" is true for sure, but it is so therapeutic to be able to vent to someone who knows exactly what goes on with a caregiver spouse. I hardly recognize the person I was so head over heels in love with 40 years ago. Being a naive 25 yr old did not prepare me for the roller-coaster of living with Bipolar disorder and now numerous physical problems. I rely on prayer, writing in my journal and sharing honestly with a few trusted confidants to get perspective on my situation. My children and grandson are the joy of my life and just an hour with them will lift my mood and restore my hope for the future. "Recharging"my emotional batteries by getting outside and digging in my little garden also helps as does escaping through the world of books. My husband & I do enjoy watching movies together at home and it gives us something to talk about besides his aches & pains or his emotional problems. The thing that bothers me most is that I feel people ( extended family, friends) pity me for being married to a cripple. I don't want pity - what I need is them to call my husband for a chat on the phone once in a whlie; they would be amazed at the positive change in him after one of these calls. That is more help to me than any amount of pity or saying they feel sorry for me. I am a naturally caring person and I also work in the health care field so that having male patients/drug reps/ doctors fall in love with me seems to be an occupational hazard... it might add a little comic-relief to the day, but it does not help our situation. In the end, we have to live with ourselves and take care of ourselves as best we can. This was brought home to me very strongly this summer when I succumbed to a serious sinus infection brought on by unrelenting stress. 25 days of antibiotics was a big wake-up call. All the best to everyone sharing on this site. Care giving is not for sissies!!!!

 

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An anonymous caregiver answered...

"If it was you, instead of him, would he stick around and spend the rest of his life taking care of you and managing everything around the house?" Hmmm. Not hardly, in my case. A friend offered me that parable when I finally confessed my new marriage to someone who suddenly had early onset dementia was almost killing me. He changed from a person I adored and respected into needy, cursing, critical,pitching temper tantrums and causing lots of legal and liability problems, never mind almost burning the house down four times a week. I' went through guilt, major depression, anxiety attacks that put ME in the hospital with more bills...I apparently don't have to tell any of you about this. My friend finally asked me if he would do the same for me, and the answer was a big fat No! I don't have years (only 14) and children invested in the relationship like many of you with long marriages. That would be so much harder to deal with. As for the 30 year old man who had saddled himself with a hospital junkie, get out now. I worked in a hospital and saw these drug-seeking hypochondriacs who would break their own fingers to get a script for more pain meds. Do not waste your life on her, son, you cannot win that one. For the others, it's a relief to see we are not alone with our thoughts, and unfortunately, the lack of solutions. And the lady who feels guilty for putting her husband elsewhere, though she still sees him...please don't feel bad. That would be the perfect solution in many of the cases above, if only the patient could be pried out of our lives. The patient could get 24/7 care, you could still go visit him, and have some quality of life yourself to spend with loved ones, or in my case, not wake up to the smell of burning pots and pans in the kitchen or get a phone call because he's stolen and wrecked my car again. I see this site has a "keep 'em at home at all costs" mentality among the bloggers, like no one wants to admit they would even accept relief by putting a loved one in a facility. It was a relief to find some many people who feel the way I do. Hugs to all of you, and let's stay in touch.

 

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An anonymous caregiver answered...

Wow I can relate to all of you!! I am 52 yrs. old and I have been taking care of my husband for close to 2 years now after a massive stroke. The problem is we were only married a year. I didn't even get the chance to really know him and now I am responsible for all his care. He cant walk or even stand for that matter and has no use of his left arm/hand. He has to be taken to the bathroom by wheelchair and I transfer him back and forth to the toilet then back to his lift chair. This is not how I pictured things. I know the phrase "in sickness and in health" but I only got 1 year of health! Now with all the work to care for him along with 2 years without intimacy is taking its toll on me. I am battling a lot of guilt for my thoughts right now. I was previously in a 20 yr. marriage that ended when my ex husband had an affair. I would feel more obligated if it was my ex husband that had the stroke because we had a great life and raised 3 boys together. My boys also help care for their step father which I feel guilty about as well. I'm sure its good for their character but I wish they didn't have to do it. I can't afford to pay people to come in and his insurance doesn't cover having him in a care facility. That would be even more guilt anyway so not sure if I could do it. He seems perfectly content with the way things are which is even more frustrating for me because I don't think he will ever improve till he gets mad enough to make an effort to help himself. My sister thinks he just likes being taken care of. Sometimes I wonder that myself. This is not the person he was, he was a hard worker. When I work it takes 2 of my boys to care for him (they split the shift to accommodate their work schedules. I wish I could work more because we could use the money but its a balancing act trying not to burn my family out. My husband has grown kids but they have their own lives and I don't blame them for not wanting to feed their dad and change his diapers. Anyway I keep wondering what are my obligations under the circumstances. I have injured myself so bad from all the lifting etc that I hurt constantly. My doctors have prescribed pain meds which I refuse, so I just push through the pain. I was told that I need surgery in both arms and my neck, but have no way to schedule it due to the needs of my husband. Asking his family to help, that's a joke. Seriously I don't know what they would have done if I didn't marry him a year before he had this stroke. He would be their responsibility now not mine. I feel bad for him but my life feels like its over. My days off are more exhausting then my days at my job. If I had some respite I don't think I would have the energy to do anything. I think I would just sleep.

 

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peglegpeggy answered...

Women of the World...we belong to a very special group of women..mums, wives, partners, caregivers..we give and give..... I had an affair and fell in love...deeply in love - he was a man..what can I say but they do not have the love that women have....My sisters out there..take care.. find some time for U - so many people told me this and I never did it. Now as my husband is in hospital for a few months I have enjoyed going to a coffee shop and reading the newspaper...finally going over to a neighbour's house and having a few glasses of wine! joy o joy! Many ill people become egocentric and they choose that for I have met other people and even kids who are NOT egocentric and are just so incrediible. Yeah I do feel like a bitch lately but I willnot be able to stay if I remain a slave to his disease - and it is not his illness that enslaves me but his unwillingness to look beyond today.

Ladies...women...sisters......toy boys/lovers/jobs/our kids etc are short term relief.....have a coffee and read the newspaper...the staff will notice U coming in and start to become friendly with you - that is a start! U R wonderful, caring people and yes we all don't deserve to be treated badly or feel guilty - But bcoz U R a nice/good person ¨ will feel guilty no matter what U do for yourself....just learn to live with it bcoz it is not wrong..ur thoughts..ur dreams..ur actions...it keeps U going....ur life is ur life and it is very short. My husband is not the first I would lose..my baby brother = 2 days old, my sister 8 years old, my mum 49 years old, my grandma 68 years old...I am 53 and now I am dong 75% of what I want and protecting our daughter (19) from hurtful stuff he says. Dammit...go girls....I will never stop dancing!

 

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peglegpeggy answered...

Just wanted to add....My partner's mum also lives with us in her own seperate granny flat. She is 83 and thankfully can still drive however she fell and broke several ribs...she has a daughter the same age as myself and who lives very very comfortably..but we only see her on Xmas and maybe Easter...nothing was arranged for her 80th (I was busy with my partner and being made redundant at work!). So I arranged an 83rd party. The daughter is so jealous of her brother having their mum live with us!! For heavens sake! If only she cared for one of them! I have finally got to a place where I am not hurt by comments or opinions...my sisters and nieces do not get the attention (as I am much older than sister I am more of a grandmother age for my nieces - and this sister of mine witnessed our mother murder as a 17 yo) and I just thin F it!!! I am doing my thing before I expire and if I win the Lottery I am having a facelift and a massage by a pretty young thing (a guy of course) then going dancing to 70s, 80s 90s old hits...Tina Turner U and I can dance sister!

 

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An anonymous caregiver answered...

Oh my God, is this how my wife feels?

Please know that as men, we think you found our strong desire for sex a burden early on, therefore we see this aspect of our disability a blessing "for you". We also worked really hard to provide and would never dream that you would leave or betray us in our time of need.

But leave...we will get over it...clearly you are not much to be missed!!

 

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Struggling like you answered...

Like many of you, I am the well spouse. My wife and I married 32 years ago. That was followed by a number of happy years, a daughter, and then MS about 20 years ago that totally destroyed my wife physically and cognitively. She can do nothing for herself, and for the last 18 years, she has needed full time care. Fortunately, the local Easter Seals chapter has a good adult day care center, but for 18 years, I have been wife's nurse outside of working hours, both father and mother to our daughter, the cook, the house-cleaner, and more, I expect to remain all of those things for the foreseeable future -- regardless of what happens, I will always care for her, and provide for her care.

Still, I have reached a point where something must change. I wish I could find a exceptional woman that would appreciate my commitment as well as understand that I still have something to share. I wish I could find that friend to travel with, enjoy lunch with, go to an occasional movie with, make love to, if it came to that.

In reality, I never expect to find that woman, but if I did, I would feel no guilt, nor abide anyone who would tell me that what I chose to do was wrong. I am a strong believer that before any of us has the right to condemn the actions of another, we need to walk in their shoes for a short while -- or for 18 years. I have often asked myself the question, if I knew 18 years ago what my wife's MS would lead to, would I would have left her? In all truthfulness, I don't know. If I can't answer that question, then I have no right to judge anyone who decides to leave their spouse.

I do, however, reserve the right to judge hypocrites who judge others, but never ask themselves that question, or who lack the willingness to look into their own soul with blunt honesty for an answer. While I can't tell anybody what to do, I can tell you who to avoid.

 

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ljkrajcik answered...

I started this in 2010 and here I am four years later, after choosing to stay. I had a friend who changed his mind about the situation, and I never looked for anyone else in the same situation, that could accept my commitment. We were married 29 years. We didn't get to see 30 years. I stayed until the end, which happened 4 months ago. He was diagnosed with cancer in February 2013. He was doing great, until the sepsis and pneumonia struck in December. Unlike some of you, my spouse was disabled, but was somewhat mobile, able to communicate and care for himself. The caring for him was different, than the day to day 24/7 care. Making sure financially and physically he was ok. Keeping a roof and food. It was the intimacy I was missing and working together to reach our goals. I felt alone all the time. The paralysis from Transverse Myelitis took that away from us and he no longer had an interest in anything, including me. Our grown children miss their father. I always thought I was being selfish to need the caring from him. He was a great father and his children meant everything. The week before he passed, he took them to a NFL football game and enjoyed every moment with them. Now that he has gone and is no longer in pain, I miss him so much. He isn't here to talk to or listen. I can't take him to breakfast or on vacation. I can't push him in the wheel chair, buy him depends, pick up prescriptions or take him to the doctors. I have kicked myself, because I couldn't make him see a doctor. I knew he wasn't feeling well, but he was always stubborn about going. I have no one to confide in and my best friend is gone. It is a tough decision to make, but each of you are in a different situation. There are no easy answers. It is difficult being a caregiver. Caring for someone for many years is difficult when they are gone, because you feel you no longer have a purpose. I must now find a new purpose and move forward. We never know what life will hand us and everything happens for a reason. We are only given what we can handle. I hope you all can find solutions, because you all have chosen to care for another instead of yourselves. You must take care of yourselves and I hope you find someone to fill your needs. ((((Hugs))))

 

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mywifecheated answered...

Hello. I'm the opposite of you. I am a disabled veteran, who was really down with depression. My wife had an affair. Please talk to your husband about it. Please don't do like my wife and have an affair then talk about your feelings after getting caught.

 

ljkrajcik answered...

I asked. I begged. I threatened affair and he said go ahead. We talked, but it never changed. It didn't matter what I said or did, he was wrapped up in himself.

 

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An anonymous caregiver answered...

You took vows when you were married. For better or worse, in sickness and in health, forsaking all others. How would you feel if your roles were reversed? Maybe GOD gave the disability to your spouse to test you. Think about it, do some serious, deep soul searching. How can you expect to ever be trusted again after betraying your spouse for something that's not their fault.

 

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ljkrajcik answered...

Those vows were taken, but until you are in a situation, you don't know what to do. If the roles were reversed, my husband would have left me. If there were no sex or attraction, and physical intimacy, he would have left. Others told me that too. It is a mental rollercoaster. It is like a divorce. When a man is paralyzed and has no feeling from the waist down, they don't care about the wife anymore. When the sick one becomes so involved in themselves they don't care anymore about the other spouse and their feelings. All I wanted was for him to come to bed, not a lot to ask. Just cuddle, nothing more, but no. I told him the disability didn't matter and it wasn't his fault, just snuggle. No touching, hugging, kissing or anything. They only think about themselves. It gets lonely. Until you have lived it, you can't make that judgement about vows, because it works both ways. It gets lonely after years of caring for someone who doesn't care anymore about you.

 

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An anonymous caregiver answered...

Sex isn't everything, if you are feeling lonely, go out and be around people. You can always masturbate. You obviously love him and care for him still, he is still a human being with feelings. Dont have an affair. If you want to go be with other men, atleast have the decency to divorce him first. If not. Know that there is no burden too heavy that you cant carry. Do something you enjoy. Go explore your hobbies. Nothing better for the self esteem than accomplishing someting.

 

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An anonymous caregiver answered...

My wife and I have been taking care of our son he is a quad.My wife has back and neck problems.I have ms for thirty yrs.We been taking of him for three years he is very abusive.We love him but can't do this any more. Am 60 yrs old and want live rest of my life with my wife of 29yrs . we don't want to leave him but what can we do?

 

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An anonymous caregiver answered...

Dearest soul caring for your son: Place him where his needs can be met and people are paid to deal with his abuse. I worked in such a place, and it's so much easier for a nonfamily member to handle abusive language and frustration because we see it constantly. Caring for someone at home as a family, you try to fix it or make it better, exhausting yourselves and further frustrating him. And you CAN'T fix it. You can't undo his condition. I see families loaded with guilt come and go here. Some made the decision because they had other children, some for financial and liability reasons (after a spouse had burned their house down), some because (like you) they had illnesses themselves. In well-run group homes and facilities, self-pity is rarely tolerated because residents police themselves. Same thing with abusive behavior. When they're among people with similar or worse conditions, most residents move past the limitations of their condition, and share adaptations. Please don't feel it necessary to become a martyr to your son's behavior. It doesn't do anyone a favor, including him. You have enough to deal with between you and your wife. Please take it from someone on the frontlines...you Can Not Fix your son's condition.

 

Loveless answered...

I'm heart broken reading all these entries. Comforted that I am not alone dealing with husbands TBI, yet all the comfort in the world doesn't change the day to day reality. No one knows what it's like unless they are living it, no one can give advice when they don't have first hand knowledge of the situation....this leaves the 'caretaker' very much alone. Add to all that the financial complications and it's nothing but a big mess. In our situation the income comes from his SSI, if I decide to put him in a care facility I will be immediately without income, hardly fair to a woman who has dedicated her life to the raising of children and care of her husband. I am 55 years old, have little work experience and sever back pain, I don't even know what 'job' I could do. My relationship in contemptuous at best and there is much verbal abuse. I have thought often what I might do different given the chance. I don't think I would have stayed married had I known the direction things would go. I wish I had divorced him 18 years ago when I was still fairly young and nice looking, when I could have entered the job market and made a life for myself. Having said this; and knowing there will be those who criticize my seeming lack of compassion, I have told my children "if I ever get to a point where I can't take care of myself, put me in a home"! I would never willingly be the burden on my children that husband is on me. You end up resenting that person, having no life of your own due to the constant care needed, and what ever love you once shared diminishes quickly under the stress. It effects your mental attitude, your physical health and your spiritual well being. It's one thing to say "in sickness and health", quite another to live it day after day. My advice (for what it's worth) is "take care of yourself"! Don't spend years in a lifeless, loveless marriage when there may well be a chance for 1 of you to be happy again. Don't buy into the guilt monster, the nay sayers, religious beliefs, or anything else that keeps YOU from being the most productive, happy, healthy, loving being that YOU can be. My dear daughter put it best when she said "we already 'lost' our Dad, please don't let us lose YOU too". She has seen the toll all this has taken on me, she has seen her once kind and loving mom become impatient, low on self esteem, and basically giving in to a life that is un-fulfilling, sad, and filled with resentment. If you have some youth left in you, and a little self respect, change your situation before it's too late! One of you is already 'gone', you owe it to yourself and your children to preserve your mental and physical state as best you can. If this means getting away from the situation, do it! When the guilt and other peoples opinions creep in, just ask yourself what you would do if the situation was reversed? Would you choose to be a burden on your spouse or children? Would you choose to have them around knowing you couldn't love them as they deserve to be loved? Would you choose to abuse and neglect their needs were the situation reversed? Make your healthy decision from your healthy mind while you can because all too soon the 'sink hole' will become so deep you won't be able to crawl out of it. Good luck, God bless, and may your healthy mind get you through the tough decisions you have to face?

 

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Wyostarr answered...

Well here I thought I was alone in my struggles, but it seems I'm not. I completely understand everyone's pain. About 2 1/2 years ago my wife of 23 years suffered 4 strokes one severe, and a heart attack. which has left her mostly paralyzed, unable to speak, with a very damaged and weak heart. She needs 24/7 care. I have three kids, 11, 13, and 20. My 13 year old son is autistic. Its been a very hard 2 plus years. Pryor to my wife getting sick, we had a very rough marriage, on the way to divorce. We mainly argued about her health, which I was worried about since she already had one heart attack, but she was reckless about it. She was more about her needs, and me and the kids were 2nd. But all that is in the past especially since she cant remember a lot of things. I've chosen to be here for my family, but at 47 I never thought that this would be my life. Emotionally, financially this has been a major train wreck. I have managed to keep our home, but it was not easy. We lost things that we worked hard for, my credit is a wreck, but we are still together. The last 2 years would not have been possible without my oldest daughter, but the cost she has paid has been great. She has given up her life to take care of her mom, and her brother and sister, and this pains me a lot. My son has tested us greatly in the last 2 years, he is very smart, but has had some massive melt downs. In the last 6 mos. he's gotten better which has helped. My kids dearly miss having a mother that can be there for them, in only a way that a mother can be, I come close but its not the same. So besides taking care of my wife, my son, and my daughters, I also manage a concrete plant, so my plate is definitely full. Might explain why I sometimes cry in bed at night, or in my pick up while driving. I've have gone thru some depression, not knowing what to do, just surviving one day at a time in the beginning. I've gotten better lately but I am very, very lonely. I miss so much. I hate seeing couples at the store, or at school functions, or my drivers kissing and talking to their wives, it painfully reminds of what I don't have and miss.

So the way I see it, I'm stuck here. Not that I mind taking care of my family, they are my responsibility and I love them, not because its a commandment from God. My wife's life is going to be a lot shorter than normal, we've almost lost her 3 times in 2 years. So what time she has, I'll make it as good as I can for her. The one way I see in making things better for my family, and I know some of you will think I'm Lucifer him self by thinking this way, is to bring in a second wife and mother into this family. To be there for the kids as a mother figure, to help care, and be a friend to my wife, and to be my friend, my partner, and have my back as I would be for her. My wife agrees with this, but finding this woman will be as hard as finding a Unicorn. As for commitment, I think most of us here are committed, and haven't walked away, but we and our families have paid a very high price in doing so. I hope most of you understand, and hope to hear from some of you.

 

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An anonymous caregiver answered...

My husband and I will have been married 25 years on August 24, 2014. Today we have finally agreed to separate amicably. He knows he is getting worse and after taking care of him for over a decade he understands my sacrifice and don't want me to suffer anymore because he can feel that he is getting worse now than ever before. He was diagnosed with Parkinsons Disease in 1997 and only now is he starting to really worsen. He knows it and thus after years and years of our discussions, we have finally agreed to separate amicably. My advice is for you to talk with your husband. Find the right time when you know he is in an even keel and mood. If he loves you, he will set you free from your suffering without your even having to ask. I caution you that now that my husband has agreed, I'm the one trying hard to keep us together. However, we are already talking about who should get the car, so I guess, we are progressing well. Thankfully, men are not as hyper emotional like women are. His attitude will help you. I felt guilty in the past thinking of leaving, and now that I can, I am still feeling guilty. But I must enjoy the rest of my life without being a martyr. I owe it to myself. I am approaching 70 and haven't been free to enjoy life for a long time. I know I will still have guilt attacks but I must do something for myself now. I hope I have helped with my story. Hugs to you, fellow caregiver and caring spouse. <3

 

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athomeinNashville answered...

Very interesting to read the replies here and the plethora of differing opinions. I just turned 50 when my wife had a TBI/Stroke four years ago. She is now completely dependent on me, is despondent and is but a shell of her former self. I would never leave her, but it might be comforting to "talk" with others that are in similar situations. I have found that just getting out with the guys on a regular basis helps a lot (having a paid caregiver with her while I am out), but there is obviously something missing in life. I just try my best to keep her happy and healthy, while doing the same for myself. Probably more than anything, I just miss the companionship we had.

 

Burden answered...

I think you should put yourself in your partners shoes. They can't walk have sex or do normal day to day stuff. As a paralysed man I feel such a burden to my wife for having to look after me. I keep hearing excuses like my partner would leave that's just you trying to justify yourself. I didn't ask to be like this but the only reason I'm coping is my wife. If I lost her I wouldn't want to be alive and I bet your partners feel the same. I know the only thing that could be worse than being paralysed is my wife leaving. I do know how hard it is as I've often thought this is hard but it would be harder seeing my wife like this but I would stay with her as I married her because I wanted to spend my life with her and nothing would Change that.

 

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An anonymous caregiver answered...

I am glad that you have a wife that you appreciate. I hope you tell her how much your appreciate her. I'm glad that you would hang in there with her if the situation was reversed and never cheat, never want a cuddle. But as you have seen on here, not all spouses are as fortunate as you. I get called [profane names] a dozen times a day. I never get a thank you, I get "I didn't want the fork, I wanted a spoon this time!" WHen I had to go to the ER when my dad had a heart attack, my husband called twenty times to see how soon I'd be back home, not to check on my dad, but because I had left the TV remote where he couldn't reach it. I never considered having an affair, I've considered walking out the door in front of a car. After ten years of this, I am numb. I am living with a monster, and I'm not the only one. Again, if your wife has stuck by you, blessings to her.

 

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An anonymous caregiver answered...

My husband and I have been married for almost 12 years. During these past dozen years it has been a rollercoaster of health issues with him. Initially I was very compassionate and took over doctors appointments, medications etc. now, after kidney failure, kidney transplant, a multitude if other health issues including a bout of rare lymphoma which took chemo and radiation, paralysis due to severe spinal stenosis and now more dialysis due to kidney graft failure..I am too exhausted to be compassionate. No closeness at all let alone sex, which cant even occur due to paralysis. I am lonely, grit my teeth every time he calls my name because I know he will need me to do sonething for him. I lost my job when the paralysis happened, he is certainly not the same person I married he is just existing not living. Had therapy sessions but he gets happy and tells them he is fine. Now he is on me wanting to know why I am unhappy! I just want to feel enjoyment again...i have now been diagnosed with adrenal fatigue so the stress of it all has finally come to harming my health...so many times I want to scream and walk out the door..

 

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An anonymous caregiver answered...

I am wife and caregiver to paralyzed, speech-impaired stroke victim. It has been 4 1/2 years. The anger, wrath and abandonment I feel is toward family and lifelong friends of my husband. So much so, if he passes before I do there will be no memorial service for them to reminisce, cry and assuage their remorse and guilt for this wonderful man who gave all of them the opportunities to be in their successful professional lives. I was in that unique industry that would have allowed him to be with me when I worked, allowing us a small income. So much professional jealousy, disability abhorrence and petty sniping that I no longer can practice my professional skill sets in their facilities; the tears, heartbreak, embarrassment and swallowing all our pride are just too much to bear. This man is the love of my life; but know this ALL OF YOU WHO WOULD JUDGE. My life is over. Because I am the caregiver, I have no life; I am effectively dead to the world. When I waken each day I ask God to get me through this day. I do not ask for tomorrow or future days. I have reached the point of no expectations of future. In a cruel twist, you should know this is really what the quantum people mean by the here and now. The immediate unfolding minutes and hours are the sum of the existence. Now as to affairs, longing for human companionship of another . . . Not! I will not do this services ever again for anyone, my tour of duty will have been served in full. When this path of travel with the love of my life is over, if I survive it, please do not think I need a shoulder to cry on, sympathy or love. It's been done by the very best. What I want is the absolute freedom of having my life to live. I have no desire to share my life with anyone again, ever. While caregiving may be a noble profession for some, if that is how one enables oneself to deal with it, so be it. For others it is a physical imprisonment for crimes not committed and murder of the spirit.

 

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nck answered...

wow lots of people in the same hell as i am ... i'm 46 , wife is 50 and we have been together for 24 years - no children as she found out she was unable to carry about 5 years into our marriage , she has cronic back problems , chrons and the real fun one , parkinsons - sex has been a non starter for the past 8 years or so and in the past 2 years she has had to use depends (adult diapers) for bladder control and all she does is watch tv in her recliner (the kind that will help her stand) and i spend all my time working or sitting in another room on the computer. I really didn't mind taking care of her and being her nurse and generally accepted that as my life from this point on , then the one thing i NEVER thought would happen or even considered a possibility .. i met someone who in 5 mins time "fixed" my soul , something i wasn't even aware was broken. We haven't done anything physically , but that's not off the table either (and their is the real kicker - if it was just a physical thing it would be easy to dismiss) ... if i were to leave i know she would loose the apt within a year and i don't even want to think about what she would do for home care .. i no longer have a wife , i haven't for some time , what i have is a family member who i love very much who i am the primary care giver for. the last thing i ever wanted to do and still do not want to ever do is hurt her. I still dont know what i'm going to do , i don't think i have ever had to deal with something this painful in my life and believe me i am no stranger to life changing issues .. just writing this does help.

 

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michellelvis answered...

Thank you!! Thank you!! After reading all of these replies I know I am not the only one. My husband suffered a t.b.i while at a v.a. medical center, he was on life support for 2 months and not expected to survive. He has survived but can't speak or walk as he has right side paralyzed. This happened about a year ago. After six months of hospitalization he is home. I relate so much to all of you. The guilt for feeling like there has to be more. The anger at his family for not being there for him. The extreme exhaustion from being his caregiver. He is the love of my life!!! I do feel that my life is over. But I also know that he gave his life for our country as well as serving as a firefighter for 36 years. He has always given of himself and I will continue to give of myself.it is very very lonely. Thanks again!

 

Southern Utah Lady answered...

I am in your shoes but I do my best and am grateful that at least one person doesn't have to feel abandoned in this selfish world. So...

How would you want to be treated if it was YOU that was sick and helpless and your husband didn't want to be bothered with your problems anymore? Do unto others and for better or worse. We live in a self gratification society. But when we run away from problems others just replace them. When we run to other people to make us happy they eventually let us down or get on our nerves. Find things to do that make you happy instead of trying to find someone else to make you happy. Then you can help your husband and still be a human being. There will come a day when you may not even be interested in sex after menopause or it may be painful and this wont matter anymore. Knowing you turned your back on your spouse will ever eat at you, especially if it was just for sex. Life goes by very quickly. The only thing you take with you is your character and your relationships.

When we were children we wanted to be pleased but now we are women and responsibility, real love, and conscience are our guides. We all have bad days but we are WOMEN and we can do what has been given us to do. Drama queens are never happy. What would you trade for? Ebola? Cancer? Extreme poverty? Societies that kill each other? One affair after another? There is no utopia. God gave us life. We all have bad times in our lives. How we choose to live our life is our gift to God.

 

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An anonymous caregiver answered...

My husband had a stroke almost 4 years ago. It happened that I was 8 months pregnant at the time. We have three children and it has been difficult managing the everyday with both my husband's care and theirs. My husband has regained most of his ability to walk and to do basic hygiene (when he wants to) for himself which is a relief. However, his mental state is quite different. He has always been combative and competitive, but he is increasingly hateful, foul-mouthed, obsessed with sex and needing me all the time. Even while I am at work I will have 20+ text messages (most of which don't make sense) before lunch from him. The kids are starting to speak in the third person about him with him in the room. For instance, "Daddy's watching something scary, tell him to change it." I suppose I am writing because I am feeling exhausted with navigating his emotional outbursts, his inability to add anything positive to our family dynamic. I do wish for freedom. After reading so many other posts, I can see that I am not alone in my caregiving emotions.

 

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An anonymous caregiver answered...

I looked after my seriously ill husband for 3 years, 24/7, never going out at all, he had been ill for ten years but for the past few years he needed continuous care. He refused to have any help except me, even when he was rushed into hospital he would not let the nurses wash him, or take him to the toilet, he waited for me to visit him so I could do everything for him, clean his teeth, wash him down etc. etc. I slept top to tail in our bed (he needed so many pillows there wasn't room for me) so if he needed me in the night I would hear him. I was at his beck and call all the time. Making him different meals as he had to have high fat, high calorie foods to keep his weight up but when I sat down with my meal, he was calling for me to help him so the meal went cold. I lost three stone in weight and had chest pains, the specialists thought I had cancer but it was all down to stress. He stopped being my husband and we became patient and carer, all our conversations were about his illness. He was rushed into hospital for the last time two months ago and died the day after, my sons and I were all with him to tell him we loved him. I cannot get over the guilt of sometimes not having patience with him and snapping at him when I did not know which way to turn. I miss him so much my heart is aching. Once when I snapped and told him to stop moaning he said to me, you will remember being nasty to me when I am gone and he was so right, the guilt is killing me. I loved him so much but we never told each other because the illness got in the way. People ask me when I am going to get rid of his clothes and things and when am I going to scatter his ashes. I tell them I am never going to get rid of his clothes and his belongings, they are in his wardrobe and no one else will be using it as I live on my own. His ashes will be saved to scatter with mine when I die. All his books will stay on our book shelf and his CD's will stay where he always kept them. There is no need to get rid of them. His magazines will go in airtight boxes as they will be worth something in years to come so our little grandchildren can have them when they are old enough to appreciate them.

The only thing I have to do is have central heating installed as ours broke down a few years ago and my husband could not do with the mess. Apart from that I will re-decorate with the paint and wallpaper we bought before he was taken seriously ill.

It is still mine and my husbands home and apart from some new bits here and there it will be like he is still living here and that gives me comfort. When I die my sons can go through the house and do what they want with it as I won't be here to see it.

 

Miriam Sophia answered...

I am sorry to hear about what you are going through. But when you got married you made a commitment for better or worse in sickness and in health until death do you part. This commitment was also a promise you made to God. Your husband is going through a lot and needs your support {we all have situation we have to go through do not go through them without God}. the best thing you can do for him is to show him love and kindness. May I suggest reading the bible. start at 1 Corinthians 13 this is what love is. what love is not is self-seeking, seeking our own interest. Christ did not come to seek His own interest, He came in the form of a servant. We are to be examples of Jesus. WE are here to help others. But seek first the kingdom of God and his righteousness, and all these things will be added to you. Matthew 6:33 Do not let Satan get the upper hand and draw you to sin. you stated that you feel lonely God will feel that void find a good bible teaching church one that teaches book by book and verse by verse. may I also suggest seeking counsel from that pastor. He should counsel you from the bible Gods way not mans way.

 

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itsnotme66 answered...

Wow. I had no idea there were so many of us. My husband had cancer about 3.5 years ago. It has left us as friends. He no longer sleeps in the bed, but on the couch with a cpap. There is a good deal of age difference between us. He's almost 70 and i'm almost 50. I work out all the time, and have maintained my appearance really well. It makes it really difficult. Lately, the loneliness has been so extreme, I cry. So not like me. Just sad, no hope kinda tears that just sort of fall out, on their own. Hard to shut those off. Not much to take your mind off a situation that permeates. I have recently had a "friend" reconnect with me through linked-in, that i had a relationship with back before my husband and i got together. He is also married. The sparks are still there. I know I would really benefit from spending time with him, and it would help me keep my sanity. So don't want to just randomly grab a stranger...not a safe, smart, or justifiable thing, in my opinion. How do y'all find ways to get together, discreetly, without inviting suspicion? Really at my wits end.

 

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lostforever answered...

My husband was ill for 10 years but the past three years was the worst and I became his 24/7 carer. I did everything for him, I was at his beck and call all the time, I really begrudged it and wished I could have time to myself. I got snappy with him and shouted at him. Well, sadly my husband died just over three months ago and god, do I miss him, the guilt I feel for the times I had no patience, the times I would not sit with him because I was fed up of talking about his illness, it has all come back to haunt me. Now I think of how he looked after us when he was fit, the hours he worked to give us a good life and a decent standard of living, the times he could have gone out with his friends but preferred to stay at home with his family, how much he loved me and what a true family man he was. I wish I could have thought about those things when he was ill and alive and spent time with him talking about things in general, the news, what was on television, discussing the newspapers or what our children were doing instead of wishing I was anywhere but there. He was a man who ensured he had a good pension when he retired so we could still have the same standard of living when we were no longer working, well now I have and it does not mean a damned thing without him. So, take my advice, make the months or years you have left with each other count because believe you me, when he/she dies all you are left with is the guilt of not caring and only thinking about yourself, you don't think about what they are going through, how bad it is for them not being the person they used to be and it breaks my heart when I think of my husbands final months of him thinking he was a burden to me when for the past 47 years he had looked after us all without ever begrudging it. I miss him more than I can say and my life has no meaning anymore, I wish I could get back those last three years and show my husband just how much I loved and appreciated him for always being there for us, but I can't and I am going to have to live with the guilt of that for the rest of my life.

 

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Looking-For-Answers answered...

I am that guy, married since '87, took ill in 2004 with un-diagnosed COPD. 12 years later she is as detached from me as she could be, no kiss goodmorning or hello, no kiss goodnight or goodbye. When I became ill I knew shed have to go to work more so i moved my bedroom to the basement so she could sleep, now my copd is managed and so is my chronic pain from 5 blown discs and chronic sciatica from construction and im not allowed back into our marriage bed, intimacy? if lack of it could kill id be dead long ago, I hurt inside and cry at night for her care and affection, she walks by my room every night yet wont come in to kiss me goodnight, im the one becoming resentful now. ive gone 8 years of hellish marriage when i needed help not judgement and im ready to leave. i just turned 51 and i dont want to spend another 30 hoping itll turn around, she has intimacy issues and they are full blown now. I want a hug dammit, recognition, a kiss, someone hanging on me saying they love me. I may never get better past where im at but im prepared to give up 3 hobbies (none of which she approves of, I cant win) sell off everything i own and leave, she can have the home and equity, she can even remain the beneficiary of my $250k life insurance policy, I just want to find someone that will show me they love me physically, im tired of talking about it, it goes nowhere, im done, ive signed up on 4 or 5 dating sites,(ive never cheated ever) My profile starts with im Married and dont want to play games about that, im looking for a friend, not to leave my wife. ive considered going to AA to look for a friend. Im stuck! I dont want to be unfaithful but doesnt faithfulness on her part include being faithful to me in having relations with me? I NEED TO BE TOUCHED!! Im dying inside some kind of new death and I do believe touch brings healing. sigh**** I have so much to say but thats enough for now. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Edited to add: Prior to my disability I ran my own home remodeling company, very successful, home at lunch and dinner almost everyday, family always came first, 30hrs a week for 80k a year, 2 new vehicles then a home, 2 sons, grown men now and fine ones very close to mom and respectful of women. Life goals achieved What was left? seeing grandchildren and working 50 hours a week for 10 to 15 years cramming it away for retirement. Now this, Talk about crushed dreams....

 

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lostforever answered...

Oh my god, I am so sorry, my husband must have felt the way you do, and it makes my guilt a hundred times worse. The only difference is that I ensured he had the largest bedroom when he went to bed, his laptop, television, nebuliser, oxygen, portable toilet etc. I slept top to toe with him as he had too many pillows and they kept falling down, just in case he needed me in the night, which he always did. I bought walkie talkies so we could be in constant touch with each other when I went outside to do the gardening. I bought portable nebulisers to carry about with him, bought a stairlift which he didn't want, a mobility scooter which he didn't want. I felt as though he was throwing my caring back in my face and it made me bitter. His Matron told me that I should not feel guilty as he would have died two years earlier if it had not been for me looking after him so well because I could not have done more, I do NOT feel guilty of not caring for him because I did everything I could for him, It is the guilt of losing the husband and wife side of it that upsets me, me becoming a carer and my husband the patient, we still laughed together but the kissing and cuddling stopped, I got angry with him because he refused to exercise, refused to take all his medication because he could not be bothered, I lost patience with him because he just would not help himself. I honestly do not know what more I could have done as it was so frustrating all the time, I was under the doctor for stress and high blood pressure, we had no central heating as it had broken down and he would not have it replaced, no running hot water, it was a nightmare. I did everything I could for him but still feel guilty about being bad tempered with him.

I would advise you to talk to someone, we even had the man from the Mental Health group come to see us both as he said we were both depressed, but my husband refused to talk to him, I tried to but all they offered was anti-depression tablets and I wanted outside help, if someone could have sat with him one day a week so I could have some me time then things would have been great, but there was no-one,even my sons only offered to sit for a couple of hours a week and now four months have gone since he died and I look back, I see many faults on both sides and am starting to tell myself, I did my best in difficult circumstances.

 

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LeosMom answered...

lostforever, You should feel no guilt at all. Your situation was not remotely like the gentleman who responded about his loveless situation. You bent over backwards for someone who pushed back against your efforts. I sincerely hope you overcome the depression and despair of tending someone you possibly could never please, and allow yourself to enjoy your remaining years. Excuse me if I sound harsh, but I've had this happen to someone I love, and martyrdom isn't good for anyone in the family. That is indeed how some are perceived by family and friends--a doormat, and that doesn't help, either. The loss of companionship, both during and after, is indeed hard to get through without counseling or even a good friend. That's why I love this blog, we can share with each other.

 

Looking-For-Answers answered...

I didnt mean to come off as a martyr Id give 10 years off my life to have her pay attention to me as you did your husband. You did everything you could to help him, I get'life goes on' treatment. I wish she was as compassionate as youve been. Im no baby or whiner but when youre suffering you (I) need a loving soul and hand there, I think your husband has no idea what he had in your care. Please dont guilt yourself or even compare our situations they are so opposite it couldnt be more. Move on and start to heal, you are a good woman and a nurturing person. I hope my wife turns around. Not a martyr Michael

 

lostforever answered...

Thank you LeosMum and Looking-For-Anwers for your kind words. Like I have said I do not feel guilty of not caring for my husband as I did my very best, it is the guilt of treating him like a patient instead of my husband. I have told my sons how I lost patience with him and shouted at him and they told me that if they had lived at home with him 24 hours a day, they would have throttled him as he was his own worst enemy and odnly did what he wanted to do and I should not feel guilty at all. I am going to put it to the back of my mind now as it is eating me up. I have organised central heating to be installed as I can no longer live without heating and hot running water, so will now start living for me. Bless you both for caring.

 

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An anonymous caregiver answered...

Hi guys. Not sure how old this thread is but I have just ended up in a similar situation. I got married 6 months ago and my wife had a stroke 2 weeks after we got married. It has been really tough. I had to be a full time carer for her for some time and that is still continuing even though she is now able to do a bit more herself. As I just got married I feel her family are interfering too much in our relationship. I don't have a relationship with her but rather her and her mum and dad. I have been forced to come and live at their house and we have nothing like a normal relationship. Just can't feel at home in someone else's home. We also have a problem with physical intimacy. Although it is possible it is so difficult that it is easier sometimes to just not bother (bearing in mind her family are the other side of the door. Which makes it quite uncomfortable). Before the wedding we lived together for two years and none of her family were really concerned as to where she was but suddenly they are ruining our life's. I can't do anything. It is getting to the point where I am beginning to resent my wife for wanting to stay here and not leaving me a choice.

 

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An anonymous caregiver answered...

Many suggest hiring someone - all well and good if you can afford it. However most may not realize that this is near impossible on a fixed income. I can empathize with this situation. I feel like I have given my life and career away for my disabled husband who is 19 years older than I. I knew it going into the marriage and gave in to marriage anyway. So you could say I am getting what I asked for/deserve. Nonetheless, I am so depressed and more than that, angry inside. We have no longer have a marriage as I have given up a long time ago. I can't deal with everything. I am resigned that he will be the death of me as I will not go through a second divorce. The first one was the reason I got stuck in this mess - rebound romance. 'nuf said.

 

Wyostarr answered...

To all of you that are in the same situation that I am in. I thought of a solution half-heatedly but then I thought about it some more. To make a connections with each other here because we completely understand our situations and have been in our shoes. So some how we connect locally, find a friend or partner that understands and be there for each other be it emotionally or physically or both. No one understands me better than someone who is going through the same thing.

 

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An anonymous caregiver answered...

Hi, I have a daughter with a brain injury, and pharma meds can cause a lot of problems. Your family might want to consider medical cannabis, to relive him of pain, and start to rehabilitate his neuro system. The developments and knowlege of this plant ( with a bad reputation) Neuro issues are largely helped by this approach. Do some research into cbd ( cannabidiol) ( high in medicinal cannabis, low in the thc) and just plain medicinal marihuana and see if it might make sense for your husband. If you're hurting its hard to be receptive to others. A video to start your research if u are interested : https://m.youtube.com/watch?v=Z3IMfIQ_K6U

 

SickOfBeingCaredFor answered...

I would just like to remind everyone that's sick of caring for their sick partner that you promised to love and cherish your partner, in SICKNESS and in health. Don't take this the wrong way but you should have thought about the possibility that they'd get sick and that you'd be called upon to care for them. Consider this; do you think we (as in people dependent on their significant other) don't realize you (the non-sick party) want to leave? Do you think we're blind to the fact that our sickness is the main reason our marriage is falling apart? Don't you think that if there was anything we could do, that we'd do it? The pain of illness and watching someone you love start to hate you is enough to make chronically ill people want to commit suicide because they feel unloved and the thought of dying painfully, slowly and alone is enough to make them want to just get it over with so they don't have to watch you leave and then have to go through this alone. That's what our sickness and, sorry to say, YOU are doing to us. You can't handle your vow and you're making us suffer for it. True love knows no bounds and if having to give up a little to make sure someone you claimed to be in love with is "okay" is just too much to bare then it wasn't true love to begin with. Sorry if this sounds harsh, I'm really not trying to "blame" anyone, but people like me are just as sick of being cared for as the people deeded to help us are. Often more so. If you're forcing yourself to stay, we see that and it makes us retreat further and further away, often times in hopes that you'll just go so we don't watch you suffer along with us. If you want to leave, then leave. If you're okay with letting the love you had just die because you can't handle going through with a promise you made, then do it. If you're a compassionate person, you'll at least make sure they have something or someone to help before you leave them to suffer alone. I understand that not everyone cares enough to stay and I don't blame you, especially if you're younger like I am (mid 20's), but you should really sit back and think on all the times they (your sick lover) helped YOU even when it would have been easier to walk away. You should try to imagine going through what they're going through and, had the situations be reversed, if they would have helped YOU and stayed by YOUR side. I know it's hard but there are ways to making this work. It just takes BOTH parties willingness to uphold their vows. Sacrifices and compromises have to be made, as in any "normal" marriage. Sometimes it might seem like we've given up and often times it's because we can tell you're starting not to care. Why should we try if you're starting not to? Why should we try being passionate if you can't be anymore? Imagine how someone like me feels, knowing that you're still so in love with your caregiver but thinking that they should just get on with their lives? Most of you are older so maybe the thought of you or them finding someone else this stage in your life would be tedious or difficult, but my husband and I are young enough to where he could still get remarried a couple of times to healthy women, have children (something I never wanted) and I feel like I'm holding him back. I'm crying writing this. It's so hard being sick all the time and watching everyone you love slowly start to hate you and it doesn't matter that I'm a good person, that I gave my husband everything when I could, that I did everything I could for him before my illness took over my life. I know he hates me and wants to leave or just wants me to die already. I don't know what else to say. Either keep trying to make this work or just leave already; don't make us suffer anymore than we already are. We know you're suffering too and yes, I know I came off like you guys are selfish for wanting to leave, but some of us gave you everything just to be treated with scorn when we needed you the most.

 

A lifelong caregiver answered...

I have cared for disabled people all of my adult life. My stepson, now in his 40s, is autistic and mentally retarded. My son, 34, is mentally ill. And my husband, 70, was born with a spinal condition that deteriorated with age. He is now bedridden. The reason why I am writing this message is to let you know that it is possible to have deep joy in the midst of suffering. It was after I stepped away from a successful journalism career last year in order to take care of my husband that he and I developed the relationship that I had always wanted. Our turnaround began one morning when I went to my knees to pray for my brother, who was facing open-heart surgery. At that point our family was in turmoil and I didn't know of anything I could do to help any of them. So I prayed with everything within me and asked God for help. Then my husband did something from his hospital bed a few feet away that began a spiritual journey for both of us: he prayed out loud as well. Every morning after that, for months, we prayed together, out loud and from our hearts, about everything. Suddenly, I found myself falling in love with my husband all over again. He began to treasure me as well. And our family members began to turn around too. We have seen amazing results since doing what we really should have been doing all along in our marriage. I want to encourage each of you that it is possible, and very likely, that if you will come to God together with your sick spouse, and begin pouring out your hearts transparently before each other, you might find a new way of thinking and living. I am so thankful that we stayed together 35 years in order to reach this point together. I know neither of us would be where we are today without the spiritual participation of the other. I wish each of you the best.

 

lostforever answered...

I am so sorry for the way you are feeling,but I think it is down to being absolutely exhausted and depressed. We were married for 50 years and my husband was ill for the last 10 years of our marriage, slowly declining until he died 12 months ago. For three years I was his 24/7 carer, we became patient and nurse and no longer husband and wife, but I still loved him. I made him one promise that he would never, ever have to go into a care home and I would look after him at home. He was impatient with me if I did not act quick enough if he wanted something and it made me bad tempered as well, all I could think of was what I had lost, but I then thought of the wonderful 40 years we had together from the day we first met until the onset of his illness and it put everything into perspective. I never, ever thought in those ten years of going with someone else, my husband was my soulmate and I made a vow when we got married, 'until death do us part'. I have been on my own now for 12 months and I cry every single day for the wonderful husband I have lost and would sell my soul to have him back with me again, illness or no illness. He was at home until the last few hours when he was taken into hospital with pneumonia, the sad thing is it wasn't his illness he died from it was the chest infection. Hang in there.

 

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An anonymous caregiver answered...

So glad to find others in my position. My husband of 18 years, started having health problems 10 years ago while I was pregnant with twins. After they were born, it became worse. When the children were 2, he had a very big heart surgery and we had to go out of state. He became a different person, crazy, paranoid, abusive, addicted and it was hell. Only recently has he been diagnosed with frontal lobe damage from that time and put on mood stabilizers. He is again the loving man I used to know. Problem is he has multiple health issues and is in heart failure. I am supposed to forget all of the abuse, cheating and drug addiction over the past 8 years and support him through his health issues once again. I avery torn and not sure I can do this. We have young children, or I wouldn't even consider it. I believe in marriage but this has really been too much.