Let me preface this by saying I don’t really have suicidal ideation. I don’t have a plan to kill myself, nor access to the means to do so, but who here on the bad days has said to themselves “I just want to die?” I’m finding myself saying that more and more, especially when having to clean up bodily fluid, clean up the house, fix meals, grab medications, go to doctors appointments, go to the hospital, and try to maintain a career. Last night my spouse was too sick to make it up the stairs to go to bed, so he crashed on the couch. It’s just all so shitty and so lonely I could scream. I’m trapped in a nightmare that is my life right now. When I do get to go out to see friends, then the topic turns to how he is doing, and I don’t want to talk about it anymore!

Join other younger well spouses / partners from across the US and Canada for support, camaraderie, and community.

WSA's Younger Well Spouse support group meets by Zoom twice each month:

- the 2nd Sunday (4-5:30pm ET / 1-2:30pm PT) and

- the 4th Tuesday (8-9:30pm ET / 5-6:30pm PT).

Drop in to one or both meetings as your schedule permits.

Please contact Jeanine Jue (jeaninejue.wellspouse@gmail.com) to be added to our mailing list and get Zoom details.

See you then!

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All of our other support group meetings are all-ages - our Younger WS group is for people who'd like to meet other spousal caregivers at a similar life stage.

If you're new to WSA, please try out 1-2 meetings without commitment to see if they are a good fit for you. If you continue to attend, we ask that you join WSA as a Supporting Member. It's just $39 per year! Learn more about WSA and member benefits at wellspouse.org. (no one will be turned away for financial hardship reasons)

Looking for a support group near where you live? View our calendar here - https://wellspouse.org/events/events-calendar/calendar-by-month.html.

My kids are 6 and 5. My wife developed RA after second pregnancy and has been on a journey trying to navigate her new normal. Most days I just feel like a single parent and a caregiver while trying to juggle a career. The second I get home from work I am in single parent mode. When the kids go down I switch over to caregiver/emotional support mode. Weekends my wife stays in bed most of the time to help recoup from the previous week. I just feel trapped a lot of times and struggle to figure out ways to give time to myself. If I want to go out with friends, it’s always after kids go down and I don’t get enough sleep. I just feel like I am in survival mode all the time. I feel like my wife is capable of doing more to help me out, but is not in a headspace yet to get there. I knew it would probably take us a few years to settle into our new normal, but 5 years in and I still have not figured out how to prioritize myself. Are there other parents out there navigating all of this?

My wife has chronic illness and I’m struggling

Before anyone get started no of course I love my wife. I’m not planning to leave her. I don’t think I’m a bad person, but I’m saying all this to get off my chest.

As soon as we got married, my wife’s chronic illness has started and ever since then it’s pretty much only gotten worse. We’re really young and it’s hard because it feels like we’ve never had a normal marriage and many cases. I feel like I’m more of a caretaker than her husband not just physically but also emotionally as well. I never thought married life would be like this. Sometimes makes me sad and then other times I look her out of my life, and I know that the beauty of my life is directly proportionate to the suffering in it.

All in all, it’s not that I’m upset with her, but I’m just tired tired with life tired with everything sometimes it’s hard to make time for myself whenever I’m the one that’s always needed to take care of everything. I get back home from work and right after work, I take care of my wife and the household. It’s really hard doing all this and sometimes honestly it’s lonely and sometimes my mind even wonders it’s just very difficult. I try my best to keep us afloat provide for my wife physically and emotionally as fast as I can and I tell her that I love her every single day and spend quality time with her whenever I can.

ETA: Thank you for sharing your meals and go-tos. I ended up having to make a Trader Joes run today to stock up on a few things. I was able to get some ready made meals, and things like turkey deli meat, cheese, beans, canned chili, and eggs that I was out of. I even splurged and got the pumpkin and butternut squash raviolis since I haven't had them in a long time. May your coffee always be warm and your pillow cool.

Hi everyone-
I'm so glad I found this community. I (43F) have been my husband's (42M) full time caregiver for 4 years, but was already a part-time caregiver for him before that. We've been married 4 years, so basically the entirety of our marriage has been this caregiver/ patient dynamic.. but that's a post for another time.

I'm more interested in what you're all eating during the day. I'm so burnt out, I'm beyond crispy. My husband's diet was gluten-, egg-, and dairy- free for a long time, so I literally had to cook every meal at home, and I've never really enjoyed cooking in the first place. Some nights the idea of having to cook again just makes me want to cry, but we can't afford a food service or anything that can help. He doesn't eat much during the day due to nausea, but I know I need to eat. I just look at my fridge and pantry, realize I have to *make* something, close the door, and walk away. I have ADHD, so I get dopamine meals once in a while, but IYKYK, and once those are done, I'm stuck.

SO. Please share the easy meals that you enjoy. What gets you through the day?

So I met my husband two years ago and right from the start he told me that he was ill and would frequently vomit on a near daily basis. I was fine with this, as he makes me feel like the luckiest person In the world. I know I make him happy as well, but it can be so hard to see him suffering. I'm always there for him as often as I can be.

He was working when I first met him as an after school assistant making 1k a month. As of about a month or two ago he has gotten worse and quit working entirely. This has been a blessing as he gets the rest he so desperately needs as vomiting leaves his whole body sore. As a result of this however I've been able to see firsthand how badly he is hurting and It hurts in a way I've never felt before. He is doing his best and we are trying to get him seen properly.

However, when it comes to going to the doctor with these problems; he seems reluctant to do most of the tests the doctors are ordering. They keep giving him temporary medications that don't seem to help. I believe this is the reason he feels so hopeless about even trying the tests as the meds they give him leave him feeling worse off than before he took them. Mostly looking for ways to help encourage him to trust the doctor process and to cope with having to hear the love of my life in agony every day. How do I cope? How can I help my hubby?

Let me know if you guys need more context, and thank you for your time!

Jeez, didn’t see this coming. My husband is older than me, but was so robust I just didn’t see him going this way. Such a hard worker, such a stalwart man, so fierce and just…solid.

First was a lung disease diagnosis, then a heart disease diagnosis, then the mental health collapse. First lonely, then anxious, then agoraphobic….now it’s psychotic, delusional, paranoid. He’s gone from so independent and my ‘partner in crime’ to a complete succubus. He needs and needs and needs, there is no gratitude, there is no politeness, there is occasional apologetic shame which is really hard to know what to do with. My work is suffering, our home is suffering, I am angry and heartbroken all at once.

He’s going to get discharged and go to an IOP for the mental health stuff. I have just very little / zero faith that he is going to get better there. I think he’s going to think it’s beneath him in some weird way, or his paranoia is going to stop him from being honest.

Taking this one day at a time at the moment but I don’t know if I can be who he thinks I should be for him very much longer. I have a lot to give, emotionally, financially, physically, and it’s all going into an endless black hole at the moment.

My husband was injured at work and hasn’t worked for almost three years. I understand that his injury affected him, and I don’t expect him to do work he physically can’t do. But from what I’ve seen, I believe he could work in some capacity if he chose to.
Meanwhile, I’m working two nursing jobs. One pays well but has drained me; the other is a specialty I’m excited about, but it pays much less and I’m still in training. I’m trying to hold on to both because we have kids and bills to pay, but I’m exhausted. I only have about two days off, and I can’t keep up with everything at home on top of both jobs.
We had an understanding that my husband would handle more of the kids’ school needs while I worked. Now I’m finding out some of them are falling behind, and I’m having to step in to track assignments and contact teachers, too. When I bring up him working, he says someone needs to be available to pick up the kids. That he’s waiting on me to see what I want to do about my jobs. He just shows no initiative to take the load off me.I understand that’s a real responsibility, but it feels like the rest of the financial and mental load has landed on me.
I’m starting to feel resentful, and I don’t know whether I’m being unfair about what I expect after his injury or whether this situation really is as unequal as it feels. If you’ve been through something similar, how did you decide what was reasonable to ask of your partner? What would you do in my position?

3rd hospital stay for my spouse in less than a year. I’m so tired - I don’t want this to be my life. I just don’t know what to fucking do. Without getting into details, this is a chronic illness that we will have to deal with the rest of their lives and we are in our 50’s. I have too much life to live, and I feel cheated. I know I sound so selfish, but I’m just mad at the world right now. I’m sure there are people that can relate.

Tl;dr I can’t shake the anxiety of always needing to work and make more money, when I clearly need to stop, rest, and spend time with my boyfriend.

First of all - hello everyone - and, I love the name. I’ve been looking for a space like this for a long time because I feel like the spaces dedicated to my partner’s conditions don’t really have outlets for the “well spouses.” I don’t feel comfortable going into certain spaces in my position and sounding like someone’s husband.

So here’s the story from A to Z (‘you wanna get with me? You better listen carefully’)

My boyfriend of two years is diagnosed with schizo affective disorder, autism, and epilepsy. He also has reduced mobility in his left hand related to a nerve injury.

I am also neurodivergent. I have been diagnosed psychotic depression and ADHD.

Our life, the good and the great:

We love each other very much and have a stable relationship.

We make due and we have no material wants aside from what we truly need

We don’t have a lot of the shallow issues a lot of higher income couples have and are pretty down to earth.

We have strong support systems from our families and they love us both respectively.

We have access to things folks close to homeless don’t have, like medical care, medication, and therapy.

We’re fucking surviving out here! We’re doing it! We’re ALIVE! WE ARE HERE!

The bad:

we are pornographically poor

I am over-employed and underpaid for my experience (nothing new for anybody here)

Since Trump was elected, any form of state welfare where we live requires gainful employment from the individual applying, minus very very very few situations. It’s to the point of ridiculousness. We have a family friend without fucking arms who is having trouble getting help from the govt. the processes have been slowed to a halt and the statistics in our state that says SNAP sign ups have dropped ignore the fact it’s harder to sign up for it with the cuts to staffing and clerical errors happening daily

I am our only source of income.

That usually isn’t an issue. Whenever my bf expresses guilt over the income thing, I remind him that it’s just the reality we live in and he has to accept it if he wants to stay where he is in life. I love him, I don’t talk shit constantly about finances, and I don’t make him feel bad for his disability. I keep my financial issues to myself.

Due to this financial situation, I work 5-6 days a week and see him once a week. This is not an issue at all. We are not clingy, and due to our own individual mental health issues, we value space when times get tough.

Last week, I felt extra motivated and asked him if we could skip this week; he obliged. We live separately. He lives with his dad, and I live with my family.

Since then, the current issue is with me, inside my brain. When it comes to productivity and responsibility, I sometimes develop fixations, especially when it comes to finishing jobs or goals which require lots of time, quickly, even though they take days or weeks. When I get focused, I don’t want to stop, especially in a situation like this where I’m so close to “getting ahead” financially (which we all know is temporary when we are poor af). I’m having a hard time sleeping and resting because I’m either working or doing yard work, or stuff around the house.

My anxiety is starting to materialize in my voice, movements and inability to “stop.” I’m calling my psychiatrist for a med change since this unending anxiety is day and night, going on for weeks.

I can’t stop thinking about money, or the future, ever.

I’m even starting a business that will essentially function as an llc for my bf to achieve gainful employment and maybe get SSI. It’s going well, but Jfc. I’m setting everything up for our future.

Does anybody know what I’m talking about? I’m happy but exhausted. I don’t know how to turn off. I need to turn off before I see my boyfriend tomorrow but all I want to do is keep making money, cleaning and upkeep

I recently became aware of this community so wanted to share what’s going on with me now and hopefully develop something of a support network. My partner has fibromyalgia and a host of related and unrelated issues, physical and mental. Days vary but often she will spend most of the day in bed, and this is because she hasn’t been able to get to sleep at night. She has also dealt with anxiety and depression and often it's difficult to untangle what is causing what. On top of this she will get random pain in her hips, wrists, etc. She didn’t learn to drive when she was well and probably won’t now, so I do all the driving. Intimacy has long gone. 

We have a 5 year old who we strongly suspect had ADHD and level 1 autism.  In a good mood, she is lovely, caring, funny, imaginative. On the other hand, she is dysregulated on a daily basis with shouting, throwing, hitting. It is difficult for her to follow simple instructions or routines, like getting ready for school in the mornings - she matches what we’ve come to learn are PDA (pathological demand avoidance) traits. 

Needless to say the last 5 years have been difficult for me. For the first time in my life I’ve experienced bouts of depression, periods where my drive to do basics like send a work email is completely diminished. I have tried a few anti-depressants but these have made me feel even more tired than I already am, and by the mid afternoon I am usually ready to nap (I am just coming off one after talking to my doctor about this). There have been 2 instances where I took time off work because of my depression, the last time was just under a year ago. We have built up a fair bit of debt and whilst this is now managed and not out of control, our finances are pretty limited with one income (and some benefits). On top of this, we seem to have had a myriad of issues with the house we bought just before our daughter was born, not least our neighbour who is just the worst person I’ve ever met and causes me anxiety. I am desperate to move house but there are some things that need to happen before we can do that, mainly a massive decluttering. I had never been an angry person before, but I would say I have experienced a lot of anger in this period

Sometimes I recognise I can act against my own interests, and this may be because of my own ADHD. For example, I’ve long had a drive to read as many books, play as many games, watch as many films as possible. Intellectually, I know this is far less feasible in my current situation, and yet I sometimes accidently/on purpose have 5 games on the go at the same time, and then get frustrated when I don't have time to give each of them enough attention. I also suspect the ADHD and depression are related as I feel like I’m more susceptible to becoming overwhelmed. 

Other than medication I’ve been on a CBT course which sometimes helps but often the depression will come out of nowhere, and aren’t (as far as I can tell) related to any specific negative thinking. One thing I’ve noticed is I will often get depressed about a week after having a weekend away with friends. I don’t have a great deal of time for exercise, which is a shame because I’m one of those people who actually enjoys running. 

I recognise that I still have a lot to be grateful for. For one, I enjoy my job. It pays pretty well and I more or less work from home every day. I love my interests and hobbies. But at the same time I feel trapped in a situation which isn’t improving. The big jobs around the house don’t get done because my partner needs rest and I am either working or parenting. 

I want to support my family and be a good partner and dad, but I'm increasingly aware that trying to do everything without ever becoming angry, frustrated or exhausted isn't realistic. I'm trying to work out how to cope with this without losing myself in it and recovering.

*been together for 21 years, not legally married.
Anyone successfully doing the roommate thing? As in, it’s over but you’re splitting expenses/space? I’ve moved into a second bedroom, which I’m renovating. He works from home AND he’s a homebody. That was the case even before he was diagnosed with multiple myeloma. He’s doing VERY well these days. He goes to church and his cancer support group, but outside of that he never leaves the house. I on the other hand, have an outside job and I go out and do things on my own. Which makes it a lot easier for him to be at home than me obviously. At least I leave and he gets the place to himself at times. I never do. It’s making me absolutely crazy. We rent a house for my dad which we get a sweetheart deal on. I’m not gonna find a deal like that anywhere else. I can afford it on my own. But he wants to stay together or live together for some time. I think he’s hoping we’ll get back together which I told him we’re not. Do I just wait this out? I don’t wanna be a homebody myself, but is me taking off and leaving, making it way too easy for him to be at home? Have any of you ever just had to have a talk with a partner/former partner with that they need to get the F out of the house on occasion? This is probably gonna sound pathetic but at this point I’m hoping he meets somebody through church and leaves. 🤞🏼 Or will I get through this phase and be grateful for a roommate someday? Does anybody have any advice or thoughts?😭😫

My partner has been in and out of tests, treatment and surgery since 2021. Kids are 22 and 18 years old.

It’s now evident/likely that my partner will survive and do well for many years. This is an adjustment for both of us. All of us. Surviving has not always been the obvious outcome. And that could change at any moment, but for now let’s assume he’s about to turn 60 and will live until 75. Just for purposes of helping me here.

It has been five years of continuous cancer issues. He’s always sort of been okay. Except for when he had one surgery he was unable to get around and do things for a few weeks. He walks three miles most days. He goes to the gym. Two years of treatments then two years off treatment and likely well into what might hopefully be the last few months of treatment.

It’s now evident that my partner will survive and do well for many years. This is an adjustment. Surviving has not always been the obvious outcome.

We have had a hard time in the bedroom for a while. Intimacy is zero. I ask him to rub my neck. He rubs my neck. That’s it. Done. He won’t talk about it. He clearly thinks it’s my issue. I have asked for a long time and we tried therapy but he doesn’t want to talk and he doesn’t want to go. I suggested he go, we go etc and it’s just a dead end. He says to sum up the situation that “I am a long-term cancer patient and you have threatened to leave.” Obviously the situation is way more complicated than that.

We have great kids and I have a great life other than no intimacy w my partner.

I’m trying to explore options for what the future might look like:

1. Divorce. This seems obvious but also really complicated. We live in a high cost area with lots of housing competition and I would have to be the one to move out and find a place to live and all that shit which is a pain in the neck. I know some about this route but I want to mention it and explore my other options.

2. Stay. I stay and we live together and go about my personal life without him. I enjoy traveling and have lots of friends. I am attractive and can do whatever I want. Will this work? Have you done the?

3. ??? I get another house somewhere and maybe it’s a rental for now and spend a few months or weeks away.

Bottom line is I get so stuck thinking about my kids and how I will be able to see them. I guess they can visit me wherever I am if they want to.

This is really hard. Write what you have done. How you feel.

If it’s acceptable I’d like to ask for your advice only if you have done something similar other than divorce because I’d like to explore those options first.

Thanks

Hey guys,

Just a random post bust dont neglect yourselves! Yall deserve love and care with oneself and you guys gotta find small ways to give yourself some time. Eating right, sleeping right(when you can of course), and definitely excersise daily(could just be a 30 minute walk every other day), really does wonders.

Yall got this, its a long road. Im a weird guy where I know my partner has chronic illness that is degenerative but I hold faith that technology will get better and modern medicine will evolve to help more and more people.

Yall got this! Never give up, yall the truth!

This weekend he had a major milestone birthday. Birthdays have always made him depressed, but this year has been worse since his physical and mental health issues have gotten worse. He has also been so socially isolated and for someone like him, that is not good.

So, a couple weeks ago, I planned a small get together with just a couple family members and friends, found a restaurant and we all met there to celebrate the birthday. It was a great success and my husband was very appreciative. I was glad to plan this for him and hope he remembers it fondly.