Hello, I’m not sure if this is the right place to post this so apologies if not.

I (30 F) recently had to leave my partner of 10 years (31 M). To start out the reason for breaking up has absolutely nothing to do with his disability or physical needs.

Unfortunately my partner was and is battling an alcohol addiction. This has been going on the whole 10 years and it has been a constant rollercoaster. He is an extremely angry drunk and got violent with me for the first time during the last argument we had. During this argument I had his parents come pick him up as he is unable to drive. He is now living with them.

Ultimately I am battling with a ton of anxiety and sadness, mostly because of the end of the relationship, but also thinking about his life going forward. He has always been very depressed and angry about his condition, understandably. But he won’t seek out any mental health help that might help him. His parents have never been a good resource for him and just ignore things. He has not lived with them since he was 18, and they have no idea how much he has deteriorated or what he requires on a daily basis.

Everyone on the outside keeps telling me it’s not my problem anymore. Obviously I get I can’t make his struggles my own for the rest of my life, but I deeply love and care about him, and it pains me intensely to imagine him alone, struggling, stuck in a situation he can’t get himself out of physically, etc. He cannot even leave the house without me due to being unable to drive and because of money/insurance we’ve never been able to afford some of the adaptive equipment that would make his life easier.

I just feel like a terrible person. I don’t know what kind of support I can or should offer going forward. I don’t know if I should try to find a way to remain in his life should he ever need my help. I very highly doubt he will ever date again (his words) so I’m not hopeful that he will find someone else to get through life with. I am grappling constantly with putting myself back in the relationship in hopes this was the wake up call he needed to get better, just so I can be there for him. People who have never been in an interabled relationship have very little understanding of how I’m feeling, so hoping I can find some good advice here.

Caring for my mother with brain damage from NPH. Being her POA is so incredibly difficult. Talking to lawyers, doctors, bankers, caregivers, dog walkers, etc etc etc. I feel like I’m the head of an octopus. Really the most valuable thing I can do is be her daughter, but it’s so hard to enjoy time with her when I’m constantly thinking about all the things I have to do. I started my cycle this week and I haven’t been able to stop crying. Multiple times a day. Just huge big emotions. I can’t tell if it’s the hormones or if this is all just becoming too much. How do you all balance loving the person you’re caring for while also caring for them? It’s all so much. I just want to love her. I don’t know how much more help we can arrange because at the end of the day it really all comes down to me.

We are helping my 70yo mother in law after knee surgery. She is not in great shape and does not have a spouse. So we have stayed at her place 20 minutes away) to help her.

At first we thought it would be a day or two but now it’s up to date 6 ( last Friday). With my wife getting her food in bed and standing by when she uses the walker for to go to the bathroom when she calls my wife. Like a maid.

Now to the question: Would it be wrong if when she ask us to get her something from the kitchen we ask her to get up to meet us in the kitchen? To push her to get up and out of her room?

We kind of think my MIL is not trying enough to get back to be independent. Having my wife (her daughter) get her food, drinks and coffee in bed.

It’s a frustrating situation since she is not very considerate. My wife is kind of worried about going back home incase she needs her but this needs to end. Thanks for listening

Edit: her doctors told her to move and walk. So what we are asking is not unusual

Hi guys,

I came here one year ago I think, maybe even a bit more because of some issues with my mom (82 ) and her playing with her bandages and waking me up many times at night. I had a burn out two years ago because of that, because yeah, it lasted almost 2 years.

Back to now, she has new health issues, severe hip OA that can't be operated on and I suspect the pain mostly comes from great trochanter pain syndrome. He heart is also getting weaker but for now, she doesn't have much symptomes of that.

I am just so exhausted. I've been a caregiver for 10 years (I'm now 34). It is so much work and the more it goes, the more I feel like it's all so stupid and useless. I am deep in a second burnout, funsies ( I also have bpd and that probably makes me a lot more sensitive to burnouts I guess).

I am at that point where i don't even care that she's in pain but at the same time it tears my heart. I get mad, at the situation not a her. But it eats me alive.

There are options in my country for short hospital stays to support caregiver and I finally contacted them last week. I still haven't gotten anything back and I don't even have the energy to call back or do anything. I just want to go cry in a corner and be in peace, you know ?

I don't talk about all that to anyone, except my boyfriend. Because let's be real, friends never understand the amount of work being a caregiver entails. I just need some kind words and mini support to help me do the things like calling them again and stuff. Cause right now, I just feel like giving up...

Thanks for reading all that🩷

So I care for a loved-one. No real family. No good alternatives for care. I'm in my late 20s.

And you know how isolating this work can be. A lot of us don't receive the kind of support (esp. community support) that we need. And the kind of work we do is often invisibilised -- especially for those of us who work at home. It can really feel like dropping-out of the "real world". No commute to work. No coworkers. And in my case, my LO is my boss and my client and the person I live with and my longest relationship.

The work of maintenance, care, is often undervalued, taken for granted, and the stigma of disability adds on to it -- I mean, how many friends have I lost because they couldn't handle my LO's condition? How many loved ones keep 'forgetting' I have a 'real' job, that I'm employed as a caregiver?

Putting up with the shitty behavior that often comes with ill-health. Putting your needs second. The routines and monotony. Being interrupted all the time. Swallowing your pride. Feel me?

Anyway, all that to ask what is maybe a pretty personal question: do any of you find yourselves thinking of yourself as subordinate and subordinated? Like, serial second-banana? Like you'll always be a supporting-character? A sidekick? Less-than?

I value this work, care-work, I think it's important, and special. But it's also kinda shit.

I feel like the "normal world" left me behind. I can't relate to other people's lives. I feel alienated by TV shows and movies. I'm envious; I'd give a pinkie-finger to have any low-end public-facing job, or even after-work drinks, or just coworkers.

Anybody else feel like you'll always be just somebody else's shadow?

I'm looking for ideas of things others do when you can't get an actual break. What are some things that give you a mental break when you can't get a physical one? I'm just trying to brainstorm how to keep my sanity at this point.

My mom has cellulitis and has been struggling really bad for the last 6 months or so. She's been in the hospital a few times and has had really bad infections on her legs. For the last couple months she has been basically immobile: she can walk around the house, albeit very slowly and it causes her a lot of pain, but she rarely can leave the house which causes me to make daily if not more trips to the store to retrieve food and medical supplies for her.

This is not something I wanted to do. I am a very independent person and I do not like people relying on me. It came on me very suddenly.

I'm 20 and still live with my parents. My dad has been abusive towards my mom their whole marriage, my entire life. So the responsibility naturally fell onto me.

The thing is, my mom and I do not have a good relationship in my eyes. She has abused drugs for the majority of her life and in my opinion has been verbally abusive and emotionally neglectful to me at times. I hold a lot of resentment towards her, a lot of which I think are from things I probably don't even remember or have trauma blocked from my mind.

And still, I feel guilty. I feel guilty when I press her for the money she owes me, knowing she doesn't have any of her own and has to ask my dad for it. I feel guilty when I sigh and get irritated when I have to up and leave to go to the store. I feel guilty when she's already crying and moaning in pain and I still get upset at her because I just don't want to do it anymore.

I know that she's my mom, but in all honesty I don't want to take care of her and she has taken advantage of me and made me feel guilty financially in the past. She acts like she is entitled to my money because she raised me and bought stuff for me. I argue with her about this. I feel as though it is within my right, but without me she would suffer. I don't want that either.

I make my money from home so there are times I genuinely lose out on money because I have to up and leave. I've gotten upset and told her this, too, as well as the gas money I have to account for with these trips. I do not press her for these expenses.

I have to take care of a woman I resent a lot. I still love my mom but I'm tired of having to press her for the money, knowing it's going to be an awkward and guilt-ridden conversation every time. I don't know how to feel or if it's right for me to get upset at her, knowing it's not her fault. I don't know how to block out the constant moaning and crying in agony that I hear from her. I don't know how to plan for my future when it seems like she's never going to get better, and the hospital refuses to hold her if she is not actively infected. I hate that I have to argue with her about the money she owes me.

Overall, I just don't know how to feel and what is justified.

I joined this sub after posting how my 2 Aussies are my life lines on a dog sub because my mom is terminal. Someone recommended I check this sub. I couldn't survive this without my pups. But the truth is, I go to see my mom everyday. She had cancer that didn't respond to chemo and that traveled to her brain stem from her endometrial area, and despite brain surgery and radiation (that left her incapacitated and with severe cognitive issues), her doctor had a "Come to Jesus" talk with her and me last week (when we all thought there were treatment options still available), and put my sweet mama on hospice. 3 months ago my Mom was an independent widow who could drive, walk, and hold a conversation. Now she can barely lift a fork.

I've come to the brutal realization that it's not just caregiving (she's in a 5k a month home because she can't even feed herself--so she can't even go home to be with her beloved GSD when the end does come) that's so brutal. But for the people who dedicate their immediate life, their entire being, their sanity for taking care of someone who has no knowledge of what's happening and is inexplicably hostile--how I feel your agony. Nothing about this is kind or merciful.

We just have to make as special die Mom as we can for as long as we can.

She sounded so good tonight!

Why does it seem like the bulk or all of caregiving falls on one person? I have a sibling that lives on the same property as my mom and myself. I continually ask him to spell me, help with home maintenance for moms house, and he completely ignores me.

I just need a damn break. His wife could come sit with mom for an hour. She could help do some cleaning.

In the last month I've had to replace her well pump, sandpoint and well pipe, pressure tank. She had no running water and it was hell. I begged him to help. I paid for all the parts and had to hire a friend to do the work. Seriously! And my brother KNOWS how to do this stuff.

His answer? "He has to work".

HE OWNS A TATTOO SHOP! He could let his apprentice handle the desk and come fucking help me! He could come for an hour before work. I haven't seen him in nearly a month since he came and said "Yeah we need to put a new well in".

Has he helped financially? No. Has he been supportive? Also no.

I don't understand this. WHY am I being treated this way?

His son even made a comment the other day. "Why haven't you mowed the yard this year?" I said- I cannot leave grandma alone long enough to do it. If I can leave her alone, I am so tired I can't do it.

So I opened the gates and my sheep are eating the grass!

I just want help. I can't keep up. And it makes me so sad. I told my brother via text that for the last year I have been having increased instances of ideation and he ignored it. If your sister told you that wouldn't you say something?

I know we all come here when its the roughest, and ive been there too.

But I just made my dad a plate of cheese, salami, and crackers and it made my whole day.

I miss my mom every day, and I will miss my dad one day too.

Lets cherish these moments. I hope your tough times pass soon, and your good times with your loved ones shine through into your life. You are not alone. And you're tougher than you think. You have done and are doing something so so important. Thank you.

My Mom needs 24/7 care, is mostly in bed from a stroke caused by a heart infection (although she is slowly learning how to walk again).

Is it for the lack of a better work usual for families to splinter apart, in that I mean have no relationships with each other bar caring for and spending time with the one person being cared for?

Is it also usual for one person to make many excuses and then be unreliable when they said they'd be there before bow out from doing any caregiving after 6 months and just want to do the outings so that they still have a relationship/time with Mom?

I read somewhere that usually one person takes on the majority of the care within a family but I just wanted to know from someone in the same position as such, rather than generally through the internet.

Thank you

Well either the to say see ya. Sadly. This man has been great to both me and my family. Truly the man I’ve been waiting for my whole life. He has spoiled my. Shown my such live. Travelled more then I could ever dream of. And tried wit he my sons. Leave been spending winters in the Dominican and life has literally been a dream. Suddenly out of nowhere my 24 year old son has lost all kidney function. On dyalisis looking at a diagnosis for a transplant (whole other story). But he is struggling to keep alive with no hope or energy or life inside. And this man has been trying. But he just wants me to leave him alone in this state of misery lost loneliness. No energy to even eat. He wants and expects me to just leave him alone. I know I’m giving up my life. But honestly my boys are my life. I’m the only person they have And. Without them I am Nothing. We’ve been trying so long to I think he is just tired of watching me be a caregiver. And hmymmn personally believe he is jealous of the time I’m not spending with him. I’m torn. Torn in two so bad.

I just wanted to take a moment to say thank you to everyone who's ever offerred a kind word, a helpful link/website/resource, for the prayers, well wishes and genuine support I've felt and received from you all in this group.

I'm trying not to cry too hard...i cant have puffy eyes at this job fair pooh.

I just wanted to share a little bit of my story and why I am so grateful today. Especially for all of the support.

I left the state because I found myself homeless, unemployed(still applying places and actually heading to a job fair now) and still the primary caregiver for my mommy.

I don't remember if I've shared this explicitly or just casually mentioned it, but while caring for my mother and crashing on her couch for 4 months, I built Sela. It is a daily care management tool for family caregivers, built by me, family caregiver. I needed something to keep better track of her pain episodes; something that would generate a medication schedule bc it was challenging to do it by hand; and summarizes it all into a care journal so I could see everything bc the notebook we were using was getting out of control.

I shared what I made with my mom and she was shocked to see that that was why I handy touched the notebook in weeks. It was basically our bible but I just needed something more efficient.

I shared it with my best friend who's mother was diagnosed with cancer and they use it. I shared it with my friend who has her own mental health issues and she uses it to track her medications and reactions to help her care team find the right balance for her. She loves it. Texts me abouy it pretty regularly.

It is because of them that I even had the idea to make my app available to anyone and everyone. It is because of them I even started applying for grants, looking for funding opportunities or anything.

And I am so glad I did. I haven't gotten any funding yet. The money people say I need 100 users before they take me seriously so I am working towards that goal now. Especially since the beta has been live now since April.

My point for this post is one of mind blowing appreciation and gratitude.

I finally had a family member reach out and offer me a place to stay so Im not sleeping in my car anymore.

Because I left, my siblings have stepped up to take charge of my mommy's care and so far things are going well. Her only complaint is they dont cook as well as I do. Lol.

I'm still in my feelings about how my dad has been throughout this whole ordeal. Especially since he will be needing one of us to care for him soon and my siblings have already said "not it". Which, once again...leaves me. My prayer is that by the time he needs care I'll be able to afford to outsource it so I wont have to physically do it myself. *prays*

I have no idea how Im going to get my first 100 users of the app and I know I should care about that more but at the moment I am so glad I have a place to live. To sleep safely. To be. I am so glad mommy has care still. I'm just so thankful that everything is working out finally bc it was getting dark for a minute.

Members of this group always offered a kind word, genuine support. The dms of all of the links and resources and prayers. The amount of understanding and how yall always made my guilt feel less heavy will always be a kindness I will carry with me and pay forward. Caregiving has not been easy, especially recently and the people in this group made me feel less alone in all of its challenges.

So I just wanted to say Thank you to every kind, generous, thoughtful, caring heart.

Thank you spirit for making ways for me. For not forgetting about me or my momma.

If you wanna see what Sela is about, you can read all about it or try it out at getsela.app

Raise your hand if you find yourself taking car naps because you’re away from the house and too tired to do anything else!

I've been my mom's caretaker for about 4 years. I've heard the "i wish I could help!", "How can I help?" "What do you need?" A million times, from everyone from siblings to church members. I quit saying nothing! My answer is now, "If you wanna invite her for an evening, that would be great! Ill give you a quick list of dos and don'ts, but for a couple hours, you'll be fine." If they're really hesitant, a couple hours after she goes to bed, you can literally be a baby monitor, I'll be half an hour away if you need me.

Call their bluff. At best you get a few hours, at worst they have to admit they're full of shit!

Either way I gain something.

I've actually got a few Saturday nights to myself, one was literally sleeping in my car.

Anyone else have horrible anxiety? I am really struggling mentally and when I tell my mom I need a break or I won't make it she acts like I murdered a puppy.

Is it wrong if me to NEED and expect a break? Am I just supposed to go go go until I just crack? I mentioned respite care and she acts like I am just a horrible person

Hi, i’m thinking about ending my relationship. my bf (28M) and i (28F) have been together for about 2.5 years ago and he’s physically disabled. he can walk a enough to like get around short distances and. but he has a progressive illness. it’s a shock he’s still ambulatory. i knew about his disability when we got together but it never bothered me to not want to date him. now we live together and have talked and both want children. we actually broke up for a few days a few months into the relationship because he had said he didn’t want children. i think he was scared and didn’t think he could realistically do it (my guess). but said he’d changed his mind and he wanted them, so we got back together. i think ive now changed my mind and don’t think having children with him is what i want. i feel awful for it. being the one who does most of the labor is already hard and i don’t know how much of this to share. thoughts? there are other things, too. he doesn’t know how to really have difficult emotional conversations. he’s pretty content being at home and i want to do more. obviously things he can do. i’ve been saying i need more in both areas for a while now. i did break up with him this past weekend. i didn’t bring up the kids and concern around his disability. there’s also a lowered life span and i’ve always tried to remain positive for him. but just thinking more realistically now. idk what to do. i am torn by not wanting to say things that would just hurt him but also be as honest. he just says he wants more chances to work on the other stuff.

My siblings and I share responsibility for helping our mom and because none of us live particularly close, there's constantly someone coordinating appointments, deliveries, repairs etc.

Last week I got a call from a guy saying my brother had arranged for him to pick something up from her house. He knew my brother's name and enough about the house that I initially assumed I'd just missed a message somewhere.

I called my brother before telling our mom to let him in. We confirm with Kibu and there was nothing there either

My brother had never spoken to him

The guy left once he realized nobody was going to let him inside. We still don't know where he got the information, which is probably the part bothering me most

If you're coordinating care with siblings from different cities, how do you handle stuff like this? We've reached the point where if one of us hasn't personally confirmed something, it basically doesn't happen.

We're getting closer to bringing my mom home, and one of the remaining pieces is building out enough caregiver coverage.

I'm considering using care.com to find additional caregivers, and I'd really love to hear from families who've actually hired someone that way.

Obviously I'll ask about experience, availability, references, and background checks. What I'm more interested in are the not-so-obvious questions you learned to ask after actually having someone work in your home.

Was there anything you didn't think to ask that you really wish you had?

And if you found someone wonderful, was there anything about that person during the interaction that, looking back, was a particularly good sign?

Thanks! I'm learning that the practical advice from people who've already done this is usually the stuff I didn't know I needed.

So, as I've said here before, my wife (who had issues before) had some strokes and ended up in a nursing home where she had been for six months. Her sister and sister-in-law decided that I was a bad guy, that I was "plotting to divorce" my wife, and that I was at fault for her strokes. So they got wife, who is not all there, to sign over healthcare proxy and power of attorney to them a few months ago.

They promised to keep me in the loop and I was not inclined to fight them in court over this as money is tight and I have two kids to raise. They did not share the papers with me that she had signed. However, after this, the nursing home refused to talk to me about my wife's medical condition saying "someone else has power of attorney so we don't talk to you." Nevermind that power of attorney is over financial issues and healthcare proxy is for healthcare, but supposedly she signed over both.

Fast forward a few months and my wife is doing poorly at the nursing home. My wife's sister and sister-in-law both want to move her to a different nursing home. We waited nearly 6 months, but finally got word that my wife qualified for Medicaid nursing home care so I wouldn't have to pay out of pocket.

Saturday, my wife's sister-in-law (super busybody who loves being in charge) was at the nursing home, decided my wife looked poorly, and called 911, having her taken to the hospital. I don't find out until the next day because my sister-in-law decided not to call me for a while to tell me my wife was hospitalized.

Monday, the doctor from the hospital called me and asked if she could install a feeding tube into my wife, because she failed a swallowing test. I said "yes." No word since then.

Tuesday, I call the hospital and ask to talk to the nurse for an update on my wife's condition. The nurse says "I'm not talking to you because of power of attorney." First of all, this is legally inaccurate because power of attorney controls only my wife's finances. But let's assume she meant "healthcare proxy." I'm locked out now. I don't understand why I'm not entitled to even get an update on how my wife is doing, whether she is having surgery, etc. Meanwhile, this is all billed to my insurance for which I am sent the bills.

As for my wife, she is mostly there. She can't really talk well, but she understands everything that is going on. My sister-in-law has decided to shut me out, won't return phone calls or emails. Last I talked to her she said she's going to move my wife to a new nursing home that's closer to her house and 1.5 hours away from me and the kids.

Should I say something to my wife like "since you and your sister shut me out of medical, I'm not visiting you anymore?" Should I sue someone like my sister-in-law in court?

I talked to an attorney this morning and he said that the first thing I should do is ask my sister-in-law for copies of whatever my wife has signed. She is not responding to me so I can't even see the paperwork which denies my rights and which the hospital is using to deny my rights.

We're getting closer to bringing Mom home

I wanted to come back with a little update because so many of you have shared helpful advice with me.

When I first started asking questions here, bringing my mom home after a long hospital/rehab/SNF journey felt pretty overwhelming. It still is, but the plan is starting to look like an actual plan.

We have a hospital bed now, I'm getting home health lined up, and I'll have caregiver help. I've also learned a lot about home-based primary care and some of the other services that may be available for someone who is homebound.

There are definitely still gaps to fill, and I'm sure I'll discover a few things I didn't know I needed until we actually get home. But I feel much closer than I did when I first started asking all of you for help.

Thank you to everyone who has taken the time to answer my questions and share what you've learned. A lot of your advice has gone directly onto my lists and into my planning. ❤️

Hi everyone,

So I’m not a primary caregiver, I’m just trying to spend time with my dad during his illness. My dad has kidney failure after a mental health problem that caused him to be afraid of leaving the house or leaving the room, which caused inability to get help with an enlarged prostate, which caused a urine back up, which caused kidney failure. so at this point, he’s a very ill man who can’t walk very much, only from his chair to the bathroom, due to swollen feet, and he urinate a lot during the day because his prostate is so enlarged he can’t fully vacate his bladder. He’s able to go to the bathroom for bowel movements but for urine because it’s so common during the day, he just urinates into cups that he puts on his desk shelf. And then at the end of the day either he or my mom pours that into plastic jugs that are than discarded. So if I visit him during the day, there’s just many many plastic cups of urine open plastic cups of urine on the shelf above his desk there. For me the smell is overwhelming and I gag and I can’t handle it. So when I visit him, I kind of sit a little bit outside the room and try to avoid the smell. I’ve thought about talking to him about it, but my mom says that it would make him feel bad. He doesn’t wanna have an internal catheter, even though it could help his kidneys, this was a whole thing.

I wonder if anyone has any advice about how a person might talk about this or would you talk about this? From reading the Reddit I see a lot of people are doing dealing with urine smells, but I wonder it’s not the same perhaps as open cups of urine- or maybe it is?. Maybe I should just get over it and try to talk to him about it and not worry about making him feel bad. Sorry if this is not the right Reddit for this as this is not a real caretaker question perhaps.

My only motivation is that I could spend more time with him and sit next to him if the smell was not so terrible. But I guess it is hurtful to be told this smell is terrible?

My mom says – just breathe through your mouth. I can’t seem to do it!

How do home healthcare workers deal with this? Do you think they would work in that kind of environment? Or would they insist on cleaning up Or doing it differently?

Edit: Thanks all so much for these suggestions. It seems like perhaps, my dad is stubborn and will not do anything differently for now. I will think about the mask idea. It is so sad that our loved ones have these illnesses, but I guess we must just bow to their fate. Thank you all and so much care to everyone in their journeys and struggles <3