r/CaregiverSupport

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?

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.

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.

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?

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🩷

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?

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?

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

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.

I ‘30F’ am struggling with how to help my medically fragile Grandfather. For background, in March of this year my grandfather ‘84M’ suffered a kidney episode that we thought would end up taking his life. At the start of that episode my grandmother ‘83F’ delayed his care by 3 days before taking him to the hospital and afterwards was frequently verbally abusive. She would say things like he was lazy when bed ridden and “faking it” when he could barley stay awake and was in pain. I personally witnessed her say these things and worse while severally intoxicated which I recorded. In May he fell and broke his hip, she delayed his care by two days before taking him to the hospital because according to her it “wasn’t that bad and he said he was fine” he couldn’t walk and ended up needing surgery to have his hip replaced …

The last straw for me was 2 weeks ago. On a whim she decided she wanted to travel from Alabama to Kansas to visit family. Instead of flying by herself, She made my grandfather drive them both, no thought to the fact he hasn’t driven anywhere in 7 months let alone cross country. Needless to say it was not a smart idea and my grandfather had a stroke. She delayed his care by 4 hours instead of taking him to the hospital or calling 911. He is currently in the hospital undergoing physical therapy and will likely be there for another month, so he is safe at this time. But she thinks he’s going to magically get better. He has feeling in his left side but is a long why to go before he can even do something like walk on his own, and to be honest it is unlikely that will happen. He’ll likely be in a wheelchair or have a walker of some kind. At this point with all that’s happened I’m convinced she is a threat to his health and whether consciously or subconsciously wants him dead. My mom is trying to help dictate his medical care as much as possible but I’m not sure how much that will help. I don’t know what to do, I’m heartbroken and so so angry.

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.

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.

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

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 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.

My husband and I have been raising our grandson, Tyler, for the last two years. When Tyler was nine, his father cheated on our daughter and they divorced. Both his mother and father quickly remarried and started brand new families with new spouses and half-siblings. Because of the chaos, my husband and I stepped in to provide Tyler with a stable home.

I need to clarify that his parents did not abandon him in a legal or physical sense. They try very hard to be in his life. They show up for him, pay for things, and try to spend one-on-one time with him. But Tyler completely hates them for destroying his original family and replacing him. He refuses to acknowledge them as mom and dad, calling them strictly by their first names. He also harbors an intense hatred for his stepparents and half-siblings.

Normally, Tyler is a good student, polite to his teachers, honest, and loyal. But beneath that polite exterior is a terrifying amount of rage and resentment. When his parents try to spend time with him, his short temper explodes. He back-talks them using slurs, and it has even turned physical—he recently hit his father and pushed his mother.

Lately, his anger has turned into something much colder and more frightening. Tyler has stopped crying, and he has stopped laughing. He seems completely emotionally detached, except when it comes to one thing: he wants revenge.

Recently, he asked his parents a question that made them incredibly uncomfortable. He looked them dead in the eye and asked, "Who is paying for your divorce? You two, or me?" He has asked my husband and me the exact same question. We just sit there in silence because we don't have an answer for him. In his mind, he is paying the ultimate price for their choices.

To make matters worse, his parents are funding his current therapy. Because they pay the bills, the therapist keeps pushing Tyler to "forgive" his parents, calling them "flawed and imperfect." Tyler feels completely betrayed by this. He thinks the therapist is bought and paid for, and it has only fueled his desire for revenge.

This situation is now severely affecting his studies. My husband and I are 65 years old. We love him so much, but we are exhausted and terrified. Tyler is completely shutting down his humanity, choosing to feel nothing but a desire to see his parents suffer.

How do we help a 15-year-old boy who has completely hardened his heart? How do we answer a question like the one he asked? Please, we need guidance on how to find him a therapist who will actually hear his pain instead of protecting his parents.

Yes. I know the title sounds irrational. I’m FUCKING tired. I feel like a failure because I’m tired, and I feel like I might be a psychopath because my compassion has rotted away. Of course I love the person I’m caring for, and of course I will be there for their ever waking needs, but I’m so fucking tired.

I’m so fucking tired.