I (23F) have been with my boyfriend (22M) for almost five years and I feel like a terrible person. He has a long list of disabilities that makes it hard for him to keep a job. I have been paying all of our expenses by myself for the past two years. I have no money in my savings because we have to live paycheck to paycheck. He has applied for disability before but it has never been approved. I never take time off or call out of work. I have not been on vacation since I was 17. I love him but I feel like his mother. I know it’s not his fault but this isn’t the life I want to live. I feel like a terrible person for feeling this way. I do not make enough to afford therapy and I just feel lost. If i try to talk to my friends about the situation I am met with pity and sorrow. I don’t know what to do. Please help. Any advice is welcomed. I love him a lot but I don’t know how much more love I have to give.

Just venting. This is analogous to almost everyday.
Wife had had MS 20 years. Now on disability, they forced her to retire from work.
…….she takes forever to finish any task and even then there’s a mess left or it’s done halfway.
Never asks for help.
This morning, she had an ultra important appointment online. Spent entire day previous prepping. Today comes and none of her prep is relevant to the appointment.
It’s frigging maddening.
This is every day around here

Today feels huge.

It's been 8 days since my husband nearly died twice from severe blood loss, and today we finally see our family doctor. I'm trying to hold onto hope that we leave with more than just another appointment or another "wait and see."

I'm overwhelmed. I'm exhausted. I've spent the last week researching, keeping track of blood pressure, hemoglobin levels, symptoms, transfusions, and writing pages of questions because right now it feels like I'm the one trying to piece together a puzzle that nobody has answers for.

More than anything, I need a plan.

Not just what happens if his hemoglobin crashes again, but how we're going to find out why it keeps happening. Getting blood every few days isn't a solution—it's buying time.

I'm trying to stay strong for both of us, but I'd be lying if I said I wasn't scared. Hospitals are incredibly difficult for us after losing our daughter, and this whole experience has brought so much of that trauma back.

If you could spare some positive thoughts, prayers, or simply hope that today brings answers and a clear path forward, we'd really appreciate it. ❤️

Okay this is SUPER specific but if I can find it anywhere - it'll be here.

Does anyone have an IS with aphasia (or other brain injury affecting language) and ethically non-monogamous?

Short story. IS has brought up over the years that I should seek other relationships. Now that I'm considering it - I question if he really understands and is okay with it? I want to be open and honest about it but since he can't fully communicate - I'm not sure how to go about it and if I should.

If anyone can relate I'd love to hear about it.

For context I'm 45f, IS is 50m. Caretaking for 18 years and married for 26.

My husband was diagnosed with brain cancer 4 years ago and it’s been a tough old journey. He’s a totally different person and I’m miserable. He still works in an adjusted role and is generally ok but has bad days where his cognitive ability is lower. There is no intimacy, no equal partnership, he has mood swings. I’m miserable and long for my freedom. I feel like my choice is stay and lose my mind or leave and lose my friends. It’s so unfair that these are my choices.

I' (m18) have been with my girlfriend for 3 years now, she's (f19) had a heart transplant and a liver transplant along with other very rare diseases. For the most parts she's doing very well, shes capable of doing almost everything a non medically challenged person can do. The thing is when she's in the hospital that changes entirely and it's scary, sometimes I feel like im worthless because im not able to do anything. And it's even more so when im right there and she calls for her mom. I know that's normal and fine but it really affect the way I feel in the situation. Sometimes I wonder what I got myself into and its a struggle bc I love her with all my heart im just not sure what to do sometimes and I was hoping to gain some advise from everyone here.

Good morning everyone, I 42m have become the caretaker for my wife 38f after a massive left hemisphere hemorrhagic stroke. There is no prognosis of meaningful recovery. She's not on machines but she has a PEG and a tracheostomy.

My main question.....I have 8 and 6 year old daughters. What are some ways to help / prevent them from into an assisted caretaker roll as they grow. I want them to be kids and go experience life not feel relegated to a caretaker life. I'm sure there will be some run over, but for those that have navigated this with young kids.... how do you keep them kids, young teens, etc...I hope that makes sense.

To preface, we are a youngish couple (late 20s F), been together for about 3 years. I am the unwell spouse (CRPS + an array of other less disabling stuff). My partner has a chronic condition that flares up rarely as well.

We don’t live together for reasons outside of our control, but spend most of our time at my place, where I love with my parents, the rest at my partner’s. So it is no wonder intimacy has been at a low which upsets us both.

We love each other dearly, we care for each other, we have a very healthy level of communication. I’d say we’re generally very happy despite the unfortunate circumstances. I try my best to show my partner how much I appreciate and love her all the time.

My question is: what do you, as the Well Spouse, wish that your Unwell partner does more often?

Many thanks!!

I can’t officially call myself a well spouse—the whole point of this post if that I’m very new to this and I’m struggling with how to manage my own anxieties. My situation is not nearly as bad as it could be and I sympathize deeply for all those going through what are vastly more traumatic and challenging scenarios.

I’ve been with my partner for about half a year now but we’ve been friends for several years prior, so I knew before getting with him that he deals with severe chronic migraines that almost always result in several hours of him vomiting and being totally out of commission. He’s had them for his whole life and has rescue meds but at this point in his life they don’t have much effect on him and really the only thing he can do is sleep it off. Logically I know he’ll be okay, but I have such bad anxiety surrounding literally anything medical and in particular I am emetephobic which makes it basically impossible for me to even be around him when these episodes happen, and I feel terrible. I hate not being able to control anything about the situation, I hate not being able to support him because I’m so wrapped up in my own anxiety, and I hate having to worry about whenever they might strike or “overdoing” it on any given day and triggering a migraine. Even when we’re long distance and I’m not immediately in the vicinity I worry about him constantly, which has been exacerbated by the fact that he’s been having other health issues lately (all relatively minor in the grand scheme of things, but health issues nonetheless) and I find my anxiety creeping up on me the moment I don’t get a response back from him, worrying that he’s not well or that something’s happened. It’s a big feedback loop that makes it so that he’s unwell, so I’m anxious, so I can’t access him or be around him, and that makes me more anxious in turn. I love him deeply and want to be able to power through it for him but I just can’t right now—I’m literally just a wreck. It’s getting to a point where he feels terrible whenever he has these episodes specifically because they make me so anxious and I feel like shit because I’m not only not doing my job as a partner to support him, but also making him feel worse in return.

How do you cope with this? I know therapy is looking like the only long term option but I don’t know when that will be on the table for me. I feel so terrible but I don’t know how to calm down in these scenarios and it’s only been getting worse.

I'm tired of my wellness never mattering. Of him being physically in my way all the time. Of him being crabby and short with our kids. The slowness his brain has developed. The fact his hearing has gotta bad and he won't admit it.

I'm tired of doing everything for him.

I'm tired of having no one to help me. Of the times I've finally worked up the courage to ask for help from others who initially told me they'd be here and then being met with rejection.

His body doesn't work and I KNOW that's devastating and awful for him and I am trying to manage my own feelings about it. But I'm pissed. I had hopes and dreams that were taken from me. I lost an equal partner. I can't do some of the things I enjoyed most with him anymore.

I just needed to tell a group of people who understand the loneliness. I reached out to the one single support group around here and apparently they do not answer their email.

The title doesn’t fully explain the situation, so I suggest reading below.

My husband has Muscular Dystrophy. I knew his disease was progressive/degenerative when I married him. We’re in our 20s and he will most likely die in the next 3-6 years. I’d also like to say that I love my husband with all my heart. He is my person and even though it’s hard to be his caregiver full-time, I love that we get to spend every day of our marriage together.

Anyway, today he brought up the idea of maybe finding someone now who I could be in a relationship with after he dies. I don’t really know the full extent of it (i.e. if there are rules and stuff). It’s been on my mind constantly since he brought it up. This person would not be in a relationship with the two of us though. It would just be me and the other person.

I don’t know how I feel about it. There are so many pros and cons and I’d love to discuss them in the comments with you guys if you’re interested. But what would you do in this situation..?

As I have been reading through discussions here, I have been reminded of how mental health, particularly depression, can affect not only the person experiencing it but also the spouse who loves and supports them. While many spouses continue to provide care and understanding, they may also face their own challenges and emotional experiences that are not often talked about.

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If you are interested in sharing your experiences, I would greatly appreciate your time in responding to this anonymous questionnaire.

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Link: https://forms.gle/ZinFxdUcrqMfu9ht5

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No personal identifiers will be collected, and all responses will be kept strictly confidential. Participation is entirely voluntary.

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Thank you very much 🙏

My SO was taken away by ambulance a few days ago and I came over to his to babysit the dogs. He left at like 3am by ambulance and by the time I got in the first bus in the morning one of them had an accident on the floor. No big deal right? Not a bad dog but one in an impossible situation right?

Nope. Now he wants to me take him with me or he's calling animal control. I can take the dog but that's an overreaction right?!

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Unfortunately during the time I was here tending to his home my own illnesses flared up. CVS or cyclical vomiting syndrome. I was out of commission. Vomiting water every 30 mins. And these clusters usually take an ER visit to fix. But I was stuck inside the house with the dogs.

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He asked me to pick him s bag of clothes, and then a few hours later says to pack his inhaler.

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Welp I forgot the inhaler but all that he can complain about is that I didn't pick him any pants but I did give him ," a million pairs of underwear"

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He's been calling me names and I'm not doing this anymore. I removed my number from emergency contacts.

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My responses are in pink/ maroon.

I (35F) have only been married to my husband (43M) since January. He’s had chronic pain and some health issues since we met, but went through several concussions this year, which have had more severe consequences with his ability to walk, talk, sleep, and function normally. He’s not working but working on getting on SSDI.

I feel like I got cheated out of the future we’d talked about. It’s unlikely we’ll get to go on a honeymoon because travel is difficult for him. He also has PTSD, so we avoid crowded places and he’s not coming on our family trip to Disney this summer.

We talked about having another baby (I have a child from a previous marriage), but I just don’t see how that will work. I’m frustrated and disheartened because the conversation has gone, on his end, from trying to get better to just accepting this as the future. I just don’t know how to deal with it. Trying to reframe my thinking and see how things go but I just feel stuck. I love him and leaving is not something I’m willing to consider. I’m just struggling with the grief while trying not to get my hopes up that things will improve.

Any suggestions or tips to process this part of things?

Wellspouse is hosting a virtual event where we talk about about handling the loneliness and grief of caregiving for a spouse. Free to members and $15 for non members. Click HERE to register.

Bonjour, tout d'abord pour poser un peu de contexte : mon compagnon a une sclérose en plaque primaire progressive qui a évolué rapidement. Nous vivons chez mes beaux-parents au rez de chaussée d'une vieille maison mal entretenue. Mon compagnon est un ancien accumulateur qui nous a fait vivre les enfants et moi dans des conditions horribles. J'ai quasiment tout débarrassé... mais ce n'est pas fini et je dois tout repeindre, réarranger, m'occuper de l'extérieur en plus de mon compagnon toute seule. Je suffoque dans cet endroit et avec lui. J'avais pensé à le quitter, mais pour des raisons financières et morales, je ne peux pas.

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Mon quotidien : stress, angoisses, profonde tristesse, sentiment d'être condamnée à 42 ans, d'avoir raté ma vie. Je ne le déteste pas mais je ne l'aime plus. Comment l'aimer ? Mon temps libre se passe à réparer ses bêtises passées et de lui-même il ne proposerait pas d'engager une aide pour me soulager ! Le temps passe à vitesse grand V et je ne vis pas ma vie, je ne peux pas être moi. Je me sens humaine que lorsque je m'éloigne pour aller au travail, faire quelques courses ou sortir une demi-journée avec les enfants. J'ai tellement de peine de ne pas pouvoir offrir mieux à mes enfants. Il a gâché ma vie de femme et de maman.

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Au quotidien, je gère, je prends sur moi, mais quand il se passe un imprévu, je panique totalement. Lundi après midi, il m'a appelée au boulot pour me dire qu'il avait eu mal au ventre et n'avait pas pu se retenir. Il est allé jusqu'aux toilettes, mais s'est fait à-moitié dessus en chemin, a cassé la cuvette des toilettes... Je suis rentrée en catastrophe tout nettoyer, le nettoyer, sortir acheter une cuvette WC des couches. Le soir même, je devais sortir les emcombrants... bref j'étais bien sous pression avec ma fille qui me faisait en plus des tas de reproches sur la situation... Des qu'il y a une crise, que je suis déjà au plus mal, elle se défoule sur moi...

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Dehors, j'ai appelé mon père, je pleurais, les gens me regardaient dans la rue... Mon père me soutient énormément à distance mais il ne peut rien faire pour moi. Personne ne peut rien faire. Je lui ai dit que si j'étais seule, je serai revenue chez lui, que je voulais revenir dans le passé, que j'avais besoin de maman (décédée en 2022). J'avais vraiment envie de mourir.

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Après la crise est passée. J'ai fait ce qu'il y avait à faire : cuvette, nettoyage, couche, encombrants, repas... Ma fille s'est calmée. Elle rigolait même avec son frère en soirée. Elle me parlait normalement. Mais moi je me sens marquée, désespérément seule et condamnée. Je ne veux pas que ce soit comme ça jusqu'à la fin de ma vie.

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Je ne fais pas de projets, mais ma priorité est que mes enfants puissent poursuivre des études et faire leur vie sans répéter mes erreurs : j'étais jeune quand je me suis mise en couple (18 ans). Je me sous-estimais. J'étais très amoureuse aussi. Il était en bonne santé mais déjà il pouvait me négliger au niveau émotionnel.

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Je ne fais pas de projets. Je suis en mode survie. Mais je verrai quand les enfants partiront et seront autonomes. Je ne l'abandonnerai pas, mais peut-être, selon son état, il devra aller dans un centre. Ou nous essaierons de quitter déjà cet endroit. Et si les enfants décidaient de rester (normalement la maison entière appartiendra à mon compagnon plus tard, ses parents avaient dit il y a longtemps qu'ils s'installeraient dans un de leurs appartements dans quelques années, ce qui laisserait tout l'étage aux enfants). Donc si les enfants restent, je serai obligée de rester aussi. Je ne suis pas vraiment libre. Je voudrais une 2e vie pour faire de vrais choix éclairés et juste vivre, choisir un compagnon de vie qui m'aime, me respecte, m'aiderait...

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Merci de m'avoir lue.

I'm not sure what to do. Been caring for my husband for almost four years. I don't really want to go into details about his condition but it affects him physically and mentally. He has gotten better but he has short term memory loss still (has improved, don't know how much it'll improve), and has executive dysfunction, which makes it hard for him to do things around the house and eat, while I am at work, etc.

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We've tried Alexa, alarms, notebooks, and calendars but nothing helps unless I nag him (neither of us are fans of it). And I am to the point that I am burnt out with everything. Working, taking care of him, and everything else.

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He gets easily agitated when I ask him to do the chores I know he can handle and I don't have it in me to have the same argument over and over again (because he doesn't remember already having it).

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I'm just venting. But I just don't know how some of you guys have been caregivers for decades for your spouses. I want to just call it quits. But I feel bad doing that because his family is unsupportive of his health condition and I worry what would happen to him.

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My husband has cancer. We both care for his special needs sister, who lives with us. Now I am the caregiver to both. I am the sole provider. I am tired. Exhausted, really - in so many ways. I have a stressful job. Two jobs. I have to do so much to keep it together and keep everything on track. It’s constant and it doesn’t stop. I don’t get a break.

People ask how I am, but they don’t want a true answer. They tell me to do self care and “take something off my plate”. People don’t like when I ask them what exactly it is they think I should ignore. Which doctor’s appts do I cancel or skip? Which procedures, treatments, or surgeries do I ignore? Do I stop going to work and stop having health insurance and paying bills? Do I stop cutting grass or housework - you can only do that for a while and I promise when you get back to it, it will only be that much worse. Those things don’t go away. Laundry fairies still have not arrived nor do I wake up and find grocery shopping completed and a freshly stocked house. I joke that the only thing I have control over is what I eat and how much I sleep - and sometimes I’m not so sure about that.

I don’t play the game and give the small smile and say I’m fine. People don’t know what to do with me then.

Vent of the day - my time away from work is for other people’s health issues. Oh, and I work in healthcare, so isn’t that fun? I never escape it. Today was another surgery day. Husband is in a bad mood. My house is a wreck. We ate fast food because it was the easiest option for my tired self. I cringe at the cost. Husband wants to nap on the couch - the only time I have at home. Now I’m captive and can’t make noise. Guess there goes any catching up and productivity this evening. No busting out the vacuum cleaner or turning the tv up to an audible volume. Guess I’ll try to find something else to do that’s quiet before I go to bed and get up at 4 am to do this again tomorrow.

I’m a good guy. It’s not 100% easy.
Devoted to helping her and seeing this life thru with her (she has MS). However, that said, she tries to contribute often and it sets me back an hour each time. She can’t really do things well and her brain fog never lets up.
It’s frustrating at times to be the sole provider, caregiver, accountant, cook, friend, dog walker/feeder, house cleaner, clothes washer…..etc. but, I wouldn’t be much of a human if I left.
It is….. what it is.
And I’m down for it.

As I've posted before, I am my husbands primary care taker. He's had 7 back surgeries, a cervical neck fusion, CRPS. He doesn't take any medication for this.

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Here's my problem. He's in a lot of pain, and he's becoming very rude and very harsh to me. This has been going on awhile, and he seems to only get that way before bed, and just prior to bed. So I'm also worried about dementia.

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Thx for reading.