r/WellSpouses

I recently lost my job and it has been compounding the loneliness and grief that I already live with from being married to a husband who's not really capable of being a husband anymore due to being cognitively disabled from a severe traumatic brain injury.

I am incredibly lonely and hurting right now and I just need to be held. I need to hear a strong, comforting voice that says, "I got you." and, "It's going to get better again." accompanied by a kiss on the forehead.

But I don't get to have that. I have to constantly be in charge, hold everything together, keep it all going, figure everything out while continuing to put my needs on hold indefinitely - I don't get to put any of it down and I don't get to even have moral support. Instead, I get to cry myself to sleep and think of reasons to not permanently go away.

I'm married without any of the privileges, advantages and joys of being coupled with someone, but still have to act like I'm in a normal, happy marriage, when I really need a partner right now.

I had someone for awhile that I could talk to who got it, who I deeply cared about, but they felt it best to no longer be in each other's lives.

I feel like my life is falling apart and there's nothing to break the fall anymore.

I honestly don’t know what to do anymore and I need advice from people who have been in similar situations.
My wife has significant medical needs and over the years I’ve basically become her full-time caregiver on top of being a husband, dad, provider, firefighter, business owner , etc. I do everything. I help with showers, getting dressed, hair/makeup, catheter care every few hours, enemas, taking care of accidents, helping her get around, handling responsibilities with the kids, all house chores, working, bills,  groceries, cooking, appointments literally everything.

I feel horrible even typing this, but I don’t feel like a husband anymore. I feel like a caregiver/provider/problem solver 24/7. I’m mentally exhausted and honestly emotionally numb at this point.

Whenever I try to explain how overwhelmed I am, it feels like she either doesn’t understand or says I’m “not doing that much.” And that she doesn't understand why I'm always so tired. She says she misses the old me from when we were dating, but back then we had no kids, no mortgage, no big caregiving responsibilities, no constant stress. I miss the old me too honestly.

I’ve tried explaining that I need time for myself sometimes like going to the gym or hanging out with friends once in a while, but it usually turns into guilt because she says I don’t even make enough time for her. The problem is even taking her out feels exhausting because everything becomes a medical/logistical operation with timing catheter care, worrying about accidents, helping her get ready, finding someone to watch the kids etc.

I’ve lost attraction and interest in sex too, not because I want to hurt her but because my brain associates our relationship with stress, pressure, caregiving, and responsibility instead of connection or partnership. Then she gets upset about that too.
I feel trapped in this cycle where I voice my feelings, nothing changes, I shut down, and go back to carrying everything. I’m becoming resentful and I hate that I feel this way.

Has anyone else been through something like this? How do you stop feeling emotionally burned out and disconnected? How do you set boundaries without feeling selfish? I honestly feel like I’ve lost myself completely. 

My wife was disabled when we met, but her condition has gotten much worse in those 15+ years. She's lost a lot of mobility and her fatigue is near constant. When she first moved in with me, she was the bug killer. She has her phobias, too, but creepy crawlies are not one of them. It got to the point where she'd hear me scream from the other room and come in with a paper towel or a shoe to kill the thing. Now, I know that my shrieks are just for myself. I do still jump at bugs and spiders but I am slowly learning to deal with them myself without needing to take a shower, vacuum the bedsheets, or scream at the top of my lungs. I didn't WANT to get over this fear. I loved that it was a small way she could take care of me, when so much of our relationship is me taking care of her. Signed, Just killed something with many many legs in the bathtub using the handle of the fascia blaster she bought for pain relief and has never once used

I just had 2 1/2 days off...my MIL had my husband over while I was gone. She brought him back early again this time after we had agreed on a time that I woukd pick him up from her house.

I came back early so id have a little more time by myself before I went to go get my husband but he was already home.

Im sure MIL got tired of taking care of my husband...I of all people knkw how tiring it is.

I am feeling despair since returning because while gone, I realized how much I felt like a human again, instead of just a caregiver.

Like, I actually had FUN! and relaxed!

I came home to immediately feeling dread of everything I have to do, and hopeless that I will never have a normal life again.

Im only 49 and husband will be 52 next week.

To think that i will never just get to be a WOMAN and enjoy just living again, is making me sad.

Does anyone have advice on how to get their sick partner to follow the doctor's directions for medicine and self-care? She believes that she knows better, does not like medicine, and it continues to put us in a situation where she gets a seizure and is now back in the hospital again. I’m really starting to get angry, and I know I cannot have a conversation with her about it because it will upset her; that’s the last thing she needs right now.

Okay, so I don't know where to go with this, but here it is: My wife doesn't want me to come to her with my negativity but I feel it's a justified negativity and I don't know where else to go... I work two full-time jobs, both in hospitality. During the day I deal with guests at the front desk, in addition to doing the hotel laundry (towels and bedding). At night I work as a night auditor at a different hotel chain. All the while this is going on, I have a labral tear in my right hip that hurts 24/7, regardless of if I'm awake or asleep, so "rest" is not something I get regularly. On top of that, I have regular complex focal seizures that occur daily and wake me up when I sleep. When I get them, I get migraines and recently (the past year or so), suicidal thoughts. Can't afford medical benefits and even if I had them, couldn't afford to be out for an extended period of time.

So...where do I go? who do I talk to? Where can I vent/complain/whine where I won't get shut down? I don't expect resolution, but it would be great to be able to lay it on someone and not get a cold shoulder.

Have y’all ever been in a situation where someone is staying alive for you, but they want to die and of course live every day like they want to die and feel awful enough to die but aren’t because of you?

Idk what to do

The last time I remember feeling this happy and not scared was four years ago before it all began. To sum it up, four years ago my(F56) husband (59) was diagnosed with colon cancer, had surgery, then chemo, then one night after a chemo treatment he said "this chemo's going to kill me." He went to bed and suffered a massive disabling stroke. Paralyzed on the right, unable to speak, four months in the hospital and rehabs. I can't even put into words the absolute terror I felt back then, would he even live, if so what will that look like? Then of course financial devastation. We lost everything, I had to sell our house, his semi, did a voluntary repo of his pickup. We're living in a family member's rental we fixed up to accommodate his wheelchair, very grateful for that. Had to keep working full time to keep the insurance coverage and still care for him full time. Thankfully his Medicare started last May, especially since I lost my work from home job in July. It's been months I've been working on this but I got us both on Medicaid, we get about $500 in food assistance and finally, as of yesterday, I became his paid caregiver! $1800 a month! With this and his $1100 disability check we'll be just fine. He's getting therapy again since we're fully covered, and doing very well, even his speech gets better every day. I feel like the weight of the world has been lifted of my shoulders! I don't even know how to act without constantly worrying and being scared. It's been four years of absolute hell but it feels amazing to have happiness, security and hope for the future. I wish all of my fellow well spouses could feel this way again, we all deserve it.

My wife had brain surgery last June to remove 5 tumors. Since then, her personality has changed, and starting in December, she has had a seizure every 4-6 weeks that takes her offline for up to two weeks.

She loses the ability to talk, to understand things, her hand shakes, and she's nauseous, and her head hurts for days.

She had her 5th seizure in the last 6 months today, and I was supposed to go on a day trip tomorrow for work. I canceled the trip, and fortunately, the client is a friend and knows her story.

How do I stay present at work? How can I travel and do my job effectively? My two college-age daughters are home, and I could have left her with them, but that wouldn’t be fair to them.

The stress, the feeling of helplessness, not knowing exactly what to do when this happens, and her anger start because I can’t understand her.

Thanks, all!

5+ months at the hospital, my wife was a fighter and beat the odds. They transferred her to a SNF and care was spotty. They didn't follow up with PT/OT though that was the whole damn reason she was there.

One of the therapists misrepresented her rehabilitation and insurance pulls the plug. She was NOT ready to come home. My wife is happy about it.

I repeatedly explained "you'll be sitting in your own shit all day and the dog will avoid you" but she doesn't fight thr insurance and we undertake full home health care for an immobilized woman who has dialysis 3 times per week. She keeps me up EVERY night and I was getting 2 hours per night.

She goes to Saturday dialysis and I find out the cabulance jerkoffs are dictating shorter treatments to her to fit their schedules. She has a heart attack, of course, right there at the kidney center.

A week in the ICU she meets the minimum definition of "good for release" and they finally call home health and offer to let her stay until all is confirmed.

No, she rushes to go home and we go just 3 days before back in the ICU and intubated.

She still has the feeding tube in, and she's already started with her bullshit. Luckily, they see the pattern and aren't giving in but they can't ignore the patient's wishes forever.

She's operating on pure emotions, no rationality. She fakes rational thinking just enough to avoid a psych eval.

My wife has an irrational fear of being admitted for psych care, after voluntarily going in after suicidal ideation.

If I commit her, she'll never forgive me. If she comes home early, I'll be the one with a heart attack (I had chest pains by the end of that first week). If ignore her, she'll be knabbed by adult protection services and the same.

She doesn't care that she's killing herself. So she can be in our stinky home (every free minute she's begging me to be at the hospital so she can ask me to care for her.) That was early on, now she just gets angry and talking about coming home.

Dog shit and piss, a non medical bed, and long hours in her own feces while the dog ignores her (allegedly her biggest motivator.

I wish she would left brain click in and decide to either heal or give up.

She's making me give up and her Mom's heart is breaking as she keeps operating on this animal caught in a snare level.

Wasn't sure what to title but I'm definitely looking for any advice cause I know you all can understand what I'm going through. So I'm 24F my fiance 25F has epilepsy she got it from a brain injury and she has full convulsions and loss of oxygen seizures. I've seen her heart stop in front of me now 3 times and seen her body fully just drop out. Not fun. Already have diagnosed PTSD from all of it I'm her full time caregiver and it's been almost 2 years now of this. We're finally getting everything on tract and hopefully will be able to get her life back to normal soon.

My quest for advice lies in the fact that I can't do anything, plan anything, think happy about anything without acting as is she's already died. I look at her things like she's not around any more I picture vivid images of me sobbing alone to our favorite songs or watching our favorite shows and crying into an ice cream container. I don't wanna live like she's already passed or like it's gonna happen at every minute. Even appreciating the moments we're having together almost feels burdensome like there's a count down above her head that I'm just starring at making sure I BETTER appreciate her. Sometimes I can't even let myself get upset with her because someone is in my head like 'you're gonna hate yourself for spending your last moments with her angry'. Is there anyway to get out of this mindset? There's gotta be something else

Ok, I am asking for some real answers. I have posted about this before but now I REALLY need answers.

My husband has cognitive decline. About a year and a half ago, he had some ED issues, related to all the problems he was having physically.

We have not had sex since then. But previously he wasnt in the mood at all.

Since being his caregiver, I have NO desire to be sexually active with him...his cognitive issues have made him like a child and it is not even remotely anything I want to handle.

However, he regained his sexual desire and now he wants to have sex.

Last night he talked about it for a long time...he understands enough to know he wants to have sex, but he doesnt understand that he is like a kid now, and why that is a turn off. Even hugging or kissing is like a kid would do, its just yucky!

I have tried the distraction tip...that seems to be the only tip offered in anything you read about this topic...or non sexual intimacy.

Well my husband is not being dissuaded by those things anymore!

I dont know what to do anymore!

I doubt that a dr woukd prescribe a med to lower the libido because my husband isnt acting out in bad ways.

My husband looks so sad when I gently say no, but again, its like a kid. He doesnt understand WHY I dont want to have sex, I do use one of my health issues as an excuse as well and thats what he thinks is my reason, but he is very sad that we dont have sex now.

But I am seriously NOT going to have sex with him, it wasnt good right BEFORE he got to this point of decline, and now it would be even worse, like I said, even hugging or kissing is off putting.

Please help! I need answers ASAP!

I can’t take a day off, ever.

I'm looking for some support. I've been caretaking for my boyfriend with aggressive multiple sclerosis for the past seven years. He's slowly been deteriorating over time and he's not the person I remember wanting to date anymore. He yells the n-word at the TV constantly, calls everything gay (very hard for me as a queer person), and converted back to Catholicism when I've always been an atheist. We don't have a sex life, he is not even capable of getting in bed for a cuddle anymore or even touching me. But I am the only one he relies on, so there's nothing I can do. Everything seems to be about him, he bitched at me this morning about the state of my room when I was lying in bed sick. I wasn't even supposed to be in bed sick, I was supposed to be at work because I've been working six days a week the past six months to try and make sure I can maintain the same income level to take care of him.

Suddenly this other man started expressing interest in me and one thing led to another. Now I'm having an affair, the one thing I told myself I wouldn't do. But I've been happier the past two weeks than I remember feeling in a long, long time.

Has anyone had this experience with being a caregiver, that you find yourself to be NOT a member of your spouses family anymore, but literally a Caregiver...you become invisible at all the family gatherings, nobody asks you questions anymore to see how you are or what youre doing.

It's what has been happening to me over the course of me taking care of my husband. And this week I have noticed it a LOT when ive been around my husband's family.

We had a family gathering this week and I am not exaggerating when I say that I was not included at all in the conversation...even tho I did speak up to try to join in. Everyone just kept talking to each other...so I sat back and just watched...like i was watching a tv show. It never used to be that way.

Then yesterday I was again at my MILs house to decorate for our nieces wedding shower, which is today.

It was the same thing..MIL talks to me like I am not related...she was very nice and cordial to me, but i am a Caregiver to her, not her daughter in law anymore. Caregiving was all she talked to me about.

It is a marked difference that I have been aware of since this started.

And Id say that since I have been married into the family for 29 years, I have never truly fit in, I am not like them at all, 😄 it's a definite shift from how they responded to me in the past, than they do now.

My husband, even tho he has cognitive impairment, has noticed the change towards me as well. Its so odd!

But you know what, im actually not mad about it, it makes it easier to just be the caregiver to them, to be more of a silent observer than an active participant in the family. Its not been easy for me to be ME while in the family, so now that they don't care whats going on with me, I feel kind of more free to not conform to what the family wants.

My two retired friends who have seen what goes on as well, have mentioned that they think the family is just glad to have someone take care of my husband so they dont have to and can continue on living their lives how they want to.And basically thats why I was kind of picked to marry my husband. Back then I was super shy and awkward and had no idea of what I wanted in life, or who I really was.

Back then my husband was higher functioning than he is now. I didnt know anything about cerebral palsy when I married him, (which is what he also has) and his family portrayed him to be "just fine and capable "

But there have always been things that weren't normal over the years.

Now everything is not normal at all.

But anyway, have any of you found this to be true about being seen in a different light in the family after becoming a caregiver to a spouse?

I've not really seen any threads on it, but its happened to me, and it really is a surreal experience and its like something youd see in a Twillight Zone episode😄

I just joined Reddit, looking to connect with others that share a similar experience.
I’m a 50+ male and my wife is stage IV. It’s been over two years since diagnosis. It’s been a very challenging two years. She has spent months at a time in the hospital and her physical abilities are greatly diminished. She is still mentally there but for from the woman I married. She has constant pain, severe depression and hasn’t even driven a car since being diagnosed.
The first year seemed more like high tension emergency response. Only thoughts were about getting her better. Now life has settled into a purely caregiver/patient life. I find I’m never alone but always lonely now. It’s work, take care of her. That’s life now. I read some of these threads and it’s good to know I’m not just an a-hole for wanting something more than I have right now. That wanting intimacy and connection is normal.
What I don’t understand with some of the talk is how do you even find something else? I already feel like my life is stretched about as far as it can go, adding another relationship on top seems exhausting.
Mostly I’m here just to vent. The person I used to do that with doesn’t need me to tell them how much all this sucks right now, they know and we both know we can’t do anything about it.

Married in 20000. Caregiver since 2005. Has anyone ever been thinking “if I had some free time, I do [idea].” But when you suddenly are gifted with that rare occurrence you just sit in a chair and do nothing.
Some kind of paralysis takes over and you just … sit. Napping may happen but you know time is limited before you have to do your duties again.
It literally feels like moving through sludge trying to do something of my own free will.
Can anyone relate?

I've seen this in a few threads already, and as a long time practicer of ENM I wanted to start a mature discussion about the topic.

Starting off; this will not work for the majority here for two main reasons.

Reason 1: To form a healthy ENM agreement, there has to be recognized benefit(s) for both spouses. My wife and I chose this before her conditions required full-time caregiving.

To suggest this as a solution for a sexless marriage, it brings little benefit to the person who can't participate. Theoretically, maybe a bounce in the step and a better attitude?

Reason 2: caregiving takes up a lot of physical and emotional energy. Will you have ANYTHING left for another person? You need to engage, crack jokes, have a date, then "perform" in bed. Then you check your phone and have 9 new messages where they need you and you get a guilt trip. Not ideal.

Beyond those difficulties, there is also a huge issue that's common in ENM that wellspouses are probably even more susceptible to. The emotional connections form and the inevitable comparisons.

You come home, and you are greeted with everything you need to do, what they need, and what the home needs.

You go to your new partners place, and the only expectation is you don't be an asshole and like giving oral...

Seriously, the difference is huge and is highly loaded with emotions and thoughts not conducive to maintaining a positive attitude about your marriage.

What happens when you emotionally bond with the new partner and they want more of your time?

These are difficult for any ENM relationship where both partners are healthy. It's ended more than a few marriages.

Now add the fact that the new partner is healthy... someone is getting hurt in the end.

Also, the idea of another wellspouse... two people needing a refresh and recharge after feeling they've given all they can elsewhere are supposed to meet the needs of someone similar? Sounds like a great basis for friendship, horrible for a passionate relationship of new experiences and excitement that's lacking.

Really depends on the people, but it sounds like an additional hurdle at first blush.

Anyhow, just kicking an uncomfortable conversation off. Ask your questions, respond with experiences that are in agreement, or to the contrary.

Just felt this needs to be addressed openly and candidly as it seems to be on the minds of many.

I'm also available via IM but maybe slow to answer.

I just got diagnosed with RRMS in January, and I hate to post asking for help or guidance but turns out MS hotlines are closed on weekends, and I’m typing this from rock bottom.

I’m F27 and my spouse is M32, I was not sick when we started dating however I am no stranger to poor health. This RRMS diagnosis came in December 2025, and my mental health plummeted equally as fast. I see my symptoms burning out my boyfriend, we live together and I’ve caught myself trying to hide how bad it is to avoid him getting stressed more. This weekend he had to leave a boys trip because I ended up in the ER for a flare, and today I can feel the resentment. I still barely understand this myself, and maybe that’s how I’m making it worse.

I had an Ocrevus infusion in February, and I’m currently taking baclofen, and lyrica for my symptoms since I primarily experience burning/biting sensations in my neck and headaches/facial nerve pain, sprinkle in some brain fog and confusion. I’ve also developed double vision and struggle with weakness. I feel awful even writing this out because I know there’s worse, but I’m essentially crying out for help.

I’ve turned 180 degrees into a new person he can’t stand (his words), and the worst part is he isn’t wrong. I’m depressed, I haven’t accepted MS, and I’ve lost 20lbs from not eating, and I’m angry this is happening. He’s burnt out, I’m burnt out, it’s a vicious cycle I can’t figure out a way out of.

Does it get better? I don’t know how to accept that this isn’t going to go away, and I need to come to terms before I lose my only support. I feel alone so I came here, maybe I’m hoping to hear how other people have handled this? Not feel alone? Idk, I’m alone in my own home asking for community or similar people on Reddit. :(