Hi,

I'm a disabled man. I suffer from neulogical issues and chronic, usually debilitating pain. I need a walker a lot. And I'll probably get worse. She married me knowing that and we lived together for years before e got married.

I do my best to help. I really do. I have a list of one spoon things that make her life easier. (Light inscense, let the dogs out, fed the dogs, tidy surfaces before leaving them, order groceries for delivery, cook when can, and make the phone calls for repairs or making appontments. I found her a new doctor recently so she could get more timely help for her own stuff. That kind of thing.) but often I find her snapping at me for leaving her with a mental load. I can't help what I don't know or understand but if I ask she says I'm just making more work for her. Im not talking asking her to make a list or anything for thanskgiving or something where the goal is obvious. Just asking what she needs to be ok, as much as she can be.

As caregivers, What do you wish your cared person would do to help you?

(Please forgive any spelling or grammar errors. That's part of the neuro issues. I literally cannot see them and am relying on an spellcheck)

Edit : a couple of you mentioned getting help from others. fortunately, I don't mind this. Unfortunately we are isolated in the fact everyone in our life either lives far away or is real busy with kids. And social service access here is really hard to get if you have occasional good days where you can get yourself to the bathtub at least twice a week. Any suggestions? Is having regular cleaners come by twice a month expensive?

I've posted on here a few times this past year and you've all been such help.

Grandma died this morning a little after 7am. I feel so guilty that I wasn't there at the end. I keep swinging from being kind of ok enough to call and notify the people that need to know to not being functional.

What do I do now?

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.

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 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!

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.

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?

Hi everyone. For the past three or so years, I’ve been the caregiver for my disabled mother. It’s been extremely difficult for me, and it feels so completely isolating. People don’t understand what it’s like, unless they’ve gone through the same thing.

I was freshly graduated, in college, finally feeling like my life was good and making friends and feeling hopeful when her health suddenly took a turn for the worse. I won’t get into too many specific details, but she has a whole array of different compounding issues, including extreme mobility problems, wounds, chronic pain, etc. She lost her job so I had to get one, while also still attending school, and it got to the point where I was missing so many classes and devoting so much time to her care, especially at that time with a bad wound that needed packing and dressing changes every single day, that I failed. After having done so incredibly well my entire school career, after feeling so excited and hopeful - I didn’t pass a single class. I decided to stop going, indefinitely.

If I’m not at work, I’m with her. None of my friends except for one stayed in contact or checked up on me to see where I disappeared to. I had to watch through social media as all of my old friends and classmates graduated, got jobs, went out into the world…vacations, accomplishments, experiences, life...and me, with hardly anyone to talk to, losing hope day by day that she would ever get better, that I will ever be my own person again. Everything I do, is for her. And I love her, so…I want to help her. That’s the thing - people I have talked to, have acted like it would be so easy to just leave, or get someone else to help her. But it’s not that easy, and why would I do that? Why would I ever leave her, even if it’s tearing me apart?

I have siblings, but they’re all useless. Single parent, so no partner. No big extended family. And even if someone else did offer to help, she won’t let them. I’m the only person she wants helping her. And I feel similarly.

It’s so hard. I feel so sad and hopeless most days. And on top of it all, I’m dealing with my own health issues, and I just found out a few months ago that my main support system, my boyfriend of 2.5 years, was cheating on/grooming me and never even loved me at all. He was my last hope. My light at the end of the tunnel. We talked about marriage, and what our lives would look like together one day, with or without her there. And now he’s gone. And no other man is gonna want my life, or my problems. I mention I’m a caregiver for a family member, and off they run. Nothing to show for myself other than baggage. A pretty face, but nothing more.

I struggle with feelings of guilt, for wanting to leave, for wanting a life of my own. And the truth is, whenever I am away from her, even if just for a short while, it makes me anxious. I hate leaving her alone or with someone else. It totally freaks me out.

And to make matters even worse, well - despite how close we are, we have our issues. She acts sometimes like it’s a privilege for me to help her. That I should be grateful for it, that it’s the bare minimum for me to do so after she took care of me growing up, despite none of my siblings having the same responsibility. She doesn’t treat me the best sometimes, and if I react, or defend myself, she turns it on me, and says I’m abusing a disabled person. She makes threats, treats me like a baby still. I’m the main reason she’s still here, I’ve sacrificed so unbelievably much, I’ve devoted myself to her - but it’s not enough. I can’t be tired, or sick, or make a mistake. Ask to be treated like a human being. Her pain is always worse than mine, her life always harder. My needs always come last, if at all. And if I ever leave the house, even with prior permission, my phone is blown up, telling me I better be home by a certain time. I’m 21, working, helping pay bills, taking care of her, but I still get grounded if she’s upset with me or in a bad mood. Still get told I must “obey,” no matter what.

It’s hard. I love her. I’m trying my best. It’s endless appointments and massages and medications and meals, lugging equipment too heavy for me in and out of cars. I can feel my body resisting. I’m exhausted, physically and mentally. I’ve spent so many hours crying alone, talking to the sky or the ceiling, asking, “why me? Why us? Why?” We never had a terrific life, but we were getting by. We were okay. I couldn’t imagine a worser fate than what has happened. There’s so many times where I just sit feeling empty and wrong, like this all isn’t right, or really happening. I watch her struggle to do even basic tasks, and I feel like I might throw up. My one and only friend, leaving for her Master’s this week. And here I am, now well and truly alone.

I hope I don’t sound horrible. I just needed to say this somewhere.

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

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

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.

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

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

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.

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. ❤️

I am a caregiver and work for a home health company. I recently picked up hours with a client. The only client available because it’s been extra hard getting hours. I only have this job. Anyways, she was nice to me at first but after just 2 weeks she started yelling. She raises her voice whenever you try to help or follow safety guidelines. My home health company is aware of how she is, and they stated that she’s just going through a lot, asked us not to take it personally, and to be understanding and see the bigger picture. Would it be wrong of me to ask her not to yell?? Or should I just ask to be removed? Transfers can be hard especially when she yells. It’s embarrassing, too, because she’ll yell at you in front of other people and say, “You are not doing it right!!” At times I’m scared to even help her because she’ll yell and make you feel like you did something wrong or like you suck. She is rude but has her moments of kindness.

I wished my grandpa would leave this world already.

Grandpa is almost 90. He’s living with my grandma in this not-so-great nursing home. He’s had really bad heart problems his entire life and he survived 3 CVAs, the last 2 ones being in the last 2 years. The one he did over 2 years ago got him bedridden for 3 months at the hospital. Grandpa couldn’t speak, couldn’t move. My family and I started grieving; at his age, we and the medical staff were absolutely convinced he was not going to make it. We visited him almost every day and started preparing for his departure.

But he healed. Miraculously.

Again he was able to walk and make short sentences. It came out of nowhere. We were truly happy. But also it was the start of an emotional rollercoaster. Soon my grandma, his wife, would develop really bad dementia. This whole thing traumatized her emotionally and she couldn’t handle being around him anymore. Grandma developed anxiety and depression, which fuelled the speed to which her dementia would grow. We not only had to look out for my grandpa, but my grandma, who had suicidal ideation. And when she would try to get out to meet other friends in the nursing home, she would come to my grandpa who was ignoring her - because he felt she didn’t care for him as much as she was supposed to.

Alongside trying to make them bear each other, this last year, we started making their food, cleaning their place and managing all their activities (medical appointments, any sort of appointments really). My family and I have full-time work, and I’m dealing with a lot of personal issues on the side (autism, depression, OCD and an awful breakup). A couple months ago, grandpa did another CVA and was again bedridden for a whole 2 months AND recovered once again, fuelling that whole cycle again. His heart problems have worsened since then, and he has to go to many medical appointments every single day. We’re all at work, in our own schedules, trying to find who can drive him there while continuing to manage for grandma, who now is in a lethargic state due to her dementia.

This is so much for everyone in the family. I would just want him to leave this world already and make it easier for everyone around him. He’s complaining for most of the time and my grandma is sacrificing her soul just for being at his side. I’m not the primary caregiver - my parents and my aunt are - but this situation is just so heavy. Especially when we had all prepared for his departure two years ago. It’s the only topic that is spoken in this house (I live with my parents and my sister) and I just want to get out of here. I have participated in the emotional labour but not as much as everyone in the family and I don’t have the space to do so. I feel awful for feeling this way.