r/WellSpouses

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.

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.

I’m 45f - nearly 10 years into my role as a caregiver… 5+ years since there has been much in the way of intimacy.

Life is busy - but I’m feeling like I’m ready to start talking to people - seeing what might be out there. It seems like the most reasonable thing would be another well spouse - someone who gets this reality and can navigate the boundaries.

Has anyone had luck with this? Any tips??

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😄

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 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.

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'm a 50f married to my 55m husband for 31 years. He has Multiple Sclerosis. I'm his primary caregiver. He's doing ok right now as far as taking care of himself, but the mobility is rough. Some days he can barely stand up. He uses a walker and a ZEEN we have to try and build up muscles. We have two grown kids.

All of that to say we are supposed to be getting ready for retirement and enjoying life. We should be traveling and dining out. Going to Concerts. I'm so jealous, and happy for my friends, but it hurts to see their European travel photos and cruise photos. Some have second homes.......

Here we are struggling to pay the bills in our tiny house and right now I can afford to retire at lunchtime the day I die.

I know so many people have it way harder and I feel guilty for being jealous. Am I a horrible human? I adore my husband and could never really tell him this. I feel guilty even trying this out.

I'm a (M40) well spouse. As we all do, I have a lot of caretaking responsibilities. I'm also thoughtful, and do a lot of things that make my wife's life easier.

I have a close friend who is in a situationship with...a guy who is absolutely not bringing enough to the table (but, she pointed out, is definitely better than any of the other options over the last few years). I asked "has he ever seen something that would be helpful for you or make your life easier, and done it, without you needing to ask?"

Her answer was

"He saw that my electric toothbrush was out of battery and he put it on the charge cord, which was thoughtful. He didn't see that the cord wasn't plugged in, so I had to look for the toothbrush and it was still out of battery, but it was still nice. " I know the bar for men is low, but come on. This woman has a PhD and incredible emotional skills.

I don't even know if any former-well-spouses would still be in this forum. But does a man who was a well spouse and brings like a third of that care and energy to a subsequent dating relationship just absolutely blow the competition out of the water?

44 M - husband, father to 3 amazing kids. My wife has been battling health issues for the last 10 years since an initial cancer diagnosis. There have been up and downs during those 10 years, we were blessed with twin boys 5 years ago after being told she wouldn't be able to get pregnant after cancer treatment.

The last 5 years has been a downward spiral. Physical and emotional intimacy is gone. I know I could "try" more but I am so burnt out after working, taking care of kids, planning, managing our lives, etc.

As much as try to remain positive, the intrusive thoughts win sometimes. I feel angry, jealous of others, at times like I am missing out on life. And most of all I miss the connection of having a partner who is more than just a roommate. I was thinking the other day I have known been with my wife sick more than not sick, I almost can't remember how she was back then. Anyways, just venting and appreciative of being able to read other's experiences.

This post won’t be helpful if you’re already feeling down.

I am having days where I’m weepy, where I can’t pull myself up out of that mood for hours. I’m already in counseling. I don’t want to go on medication.

I’m caring for a spouse with early onset Alzheimer’s Disease.

I guess I just came here to vent.

I worry that it will reach the point where I don’t want to get out of bed.

Any feel good or motivational ideas for low moods?

Aides come into our home and I am able to work.

I had this overwhelming feeling of wanting to hug and cry on someone's shoulder about life and being a caregiver. I'm not sure when the last time was that I got to do that. I mean, I cry on the regular, but I try my best to do that alone - not in front of my kids, or IS, definitely not in front of family or friends. I miss being able to be embraced by my husband and cry on his shoulder. He had a brain injury from a stroke in 2008 and so when I do break down and cry in front of him it just makes him feel bad and I don't want him to feel bad. It's not his fault, but damn I'm struggling. You'd think after this many years I'd be used to it - but I don't think anyone ever gets used to caregiving. Do you ever worry your IS will outlive you? Like the stress of being a caregiver is going to shorten your own life span? For context, I'm 44F, IS is 50M and we have two kids. Been on this journey since I was in my 20's.

I’m in Oregon on my trip that I’ve been pining over for 3 years. And my spouse came along. For 1 week.

We’ve been married 30 yrs (me 62 F) and hubby now 77M. Raised triplets who are now 27 (one has epilepsy and autism and lives with us while going to college and looking do a job). Other two kids have finished college and live far away. My DH had a stroke 3 years ago and has lumbar stenosis. He has some cognitive deficits from the stroke, but not super bad. He limits his schedule to doing stuff in the morning and napping in the afternoon. We’ve had our relationship struggles over the years - he was short-tempered and emotionally abusive. What was I? Imperfect. Our relationship was ending and I had planned to tell him I wanted a divorce the morning that he had his stroke. But I stayed. And here I am caring for him and our son. Our relationship is still strained, but better than it was. Haven’t had sex in 12 years. I miss feeling loved.

A few weeks ago I told him that I was burned out and want to take a trip up the Oregon coast, just for me. All I want to do is sit on a deck with my dog and watch the ocean. He asked why. And I said because I need some time just for me when nobody asks me to do anything for them. And you two (DH and son) will be okay without me for a while. And that I need to go for me. And I’m not sure how long I’ll be gone. Probably several weeks.

I’m crying myself to sleep tonight because being here feels the same as being at home caring for him. In 3 days he leaves to fly home.

Bc my husband sundowns (early onset dementia in his 40s w/a severe TBI) and I know that I'm going to end up crying myself to sleep. I'm so tired of hurting all of the time. I can't do this anymore 😪

So yes, this is my question today

Its a beautiful sunny day outside, I did get to sit outside for awhile when it was still warm, and rrelax a bit It was a super busy week, I should be grateful for a little time to relax instead of thinking and doing a million things. But I just feel crabby. And I dont know why.

Perhaps my thoughts have caught up to me...some things have sunken in that THIS is how my life is going to be from now on. I guess i sort of had glossed over the fact that things now are permanent...I mean, I KNEW they were, but I kind of put that out of my mind in some way, maybe to save myself grief?

My husband has a wheelchair ramp which is over my flowerbed, I knew some of my flowers would have to be dug up so they wont grow into the ramp, but I think now it hit home that this IS permanent. The ramp is not going anywhere. Everything else has to change.

My husband was saying that he wants to kill the grass underneath so we dont have to worry about mowing there, but the likelihood of HIM doing it, is not great. Someone else will have to because my husband gets worn out quickly.

And the fact that that will also change the landscape of our house, makes me sad., I have spent a lot of time making thr yard look beautiful over the years, and now...Its quite a large area that is different.

Everything is different...not just outside.

I am different.

My husband is different.

Life is different.

It will never be just normal anymore.

Just "breaks" or time off, not living my life anymore, its just increments of time, not a full life

Maybe that's why I am crabby?

Do you feel this way too?

I am more like a maid instead of the main character in my life. It is most distressing

Our physical intimacy has gone sharply downhill over the past decade, all but fallen off a cliff the past 5 along with his health.

He is still affectionate sometimes but physically can’t do much in a sexual way for a host of reasons. His hands are also impacted by his illness so very poor strength and fine motor in addition to lots of other challenges.

Everyone once in a while he will want to fool around and he’ll try and make things nice for me… I have the absolute hardest time keeping my head in it because…

1. I’m worried that he will be physically uncomfortable
2. I know that he won’t really be able to get anything out of it himself
3. turns out my partners pleasure is really important for me (that was never an issue before… it was pretty much a guarantee that things would end well for him…)
4. the amount of effort and finagling that goes into trying to get him into a position where he can be somewhat comfortable and help him manipulate toys etc to try to do stuff is a lot.
5. as much as I try to do anything I can to make it good for him I almost always feel just sad and kind of devastated that this is the best there is likely ever going to be again.

We’ve done pills/positions/toys - I’ve been willing to try damn near anything over the years…

I guess my question is how do you reconcile all the feelings and try and still show up that way for them when/if they are up for it even tho it’s become such a challenge on every level?

I’m sure there are many here who would love if they could even have this much interaction with their IS… huge hugs to all of you. I feel guilty for struggling so :(

This is going to be somewhat of a rant. There is a couple I follow on social media. The wife is the full-time caregiver for her husband. This person requires A LOT of care. The wife posted their "me time" activities, such as doing puzzles, watching TV, going out in nature, etc. and then at the end revealed that all of those activities involved her husband doing them with her.

Well, great for her. This couple can afford a lot of accommodations, including two homes.

How is this helpful? What is the point of that? Of course, there are those who can afford a ton of help and those who can't. I don't believe for one minute that she never has a respite without him. It's helpful for many of us to see others involved in caregiving, but when such blatant misrepresentation of what our lives actually look like is being put out there as some kind of standard, that couple is now unfollowed.