u/th7210

I come here to vent from time to time. Sorry. My 51 yo brother is disabled cerebral palsy. Our mother is 67 she had a stroke in 2024, I was 31 at the time I’ll be 34 in 3 mos. I had to take my brother in, since my mother was in the hospital/rehab for a year. History of heart disease, quad bypass back in 2004, was not on her meds, led to a stroke after a day procedure to put a stint in her leg. Internal bleeding kept her in the hospital, she did rehab, she retired from the school district after 47 yrs and now both brother and mother live with me. While my mom was in the hospital, my child’s father cared for him in our home. Fast forward. We’re now trying to function as well as possible given the circumstances.
That looks like, my child’s father door dashes after quitting his job to care for brother. My brother and mother now contribute about 400 *altogether* to the household. I pay all bills including 1760 rent, utilities, manage buying and preparing food. My mother is able to live alone however it was advices she no longer physically care for my disabled brother due to her health concerns. I work from home 3 jobs 2 fts, 1 night pt. *My mother never made arrangements as to how she preferred my brother to be cared for in the event anything happened to her* I respected her wishes while in the hospital and did not seek group home arrangements. My child’s father, stepped in as best he could with no proper training. Now that my mother is out of rehab, daily life looks like: them both in the 1 spare room watching tv, not answering phone calls due to spam concerns, she oversees medication & meals for my brother as his assigned caregiver that she’s been for years. My child’s father door dashes and helps as asked. He was previously paid* half* of the caregiving amount she recieves through insurance provider / HCS. Payments hauled for him. Why? Several reasons, my mother was behind on taxes (20,000) and chose to make payment arrangements to catch up on the land she owns (house got tore down). Our family advised her to sell instead of pay which could potentially afford her more money to seek help for her disabled son. She instead continued with starting payments and stopped paying my child’s father. She had her reservations that my child’s father does not do a good enough job caring for my brother and instead *started back physically caring for him herself* I’ll keep it a buck kids dad and mom bump heads often. As the now unofficial caregivers we both have our feelings about this whole situation and it causes commotion within the household. Also important to note I have a 5yo daughter who started school while all this occurred. My wishes were as a family to figure this out before my child started school. That didn’t happen. Now here we are. Unable to provide my brother proper care. This looks like. 1 spare hoarded room, my brother sleeping in his wheelchair (there’s a bed but he prefers the chair bc he has leg pains.) despite me constantly calling on his case managers, providers etc there’s been no update to him getting a caregiver, a new wheel chair, down right anything that could help us as unofficial , unvolunteered caregivers help them. There’s been a lot turnovers w his case managers, runarounds etc. I also don’t have power of attorney. My mother receives the amount, disperses it as she sees fit and refuses to change anything. Whereas, I tried to help at a time of need, I feel the living arrangement which should have been temporary, benefits everyone except me & my child. This of course has made my relationship which was already on edge due to finances even more strenuous with my child’s father. I vocalize this to my mother and I get “I’ll get out yal house” “you see don’t nobody wanna help you” she tells my brother. When in fact we did help. My child’s father still helps lift my brother so my mom can clean him up. She says I’ll go back to paying him when I finish handling my business (the tax payments) we never agreed to her paying on past due debt in the name of housing her and my brother until she could afford to live alone again. I don’t feel she should live alone until she has home healthcare and able to get assistance with his adls before moving. So now I’m In a never ending loop between my underemployed child’s father who doesn’t have funds to contribute to the household and my mother who is perfectly fine functioning as things are, since technically it all benefits her paying a bill here and there and getting help w her son without paying. Again, I have a small child to care for, the household is now completely dis functional w several different attitudes, perspectives that turn into family disputes. I have my emergency funds, I am about done with all adults in this matter (brother included, though he has cerebral palsy he is mentally aware of everything taking place). Other matters - my mom had a hoarded apt we had to help her move out of. She had a dog brought fleas into my house. I was already making arrangements to leave child’s father before the stoke occurred and my mom is aware, the house we live in is rented from his god parents, we moved here after my apartment got *shot* into by a neighbor a year before the stroke. What should have felt like a safe haven for me after the apt shooting, feels like hell. My brother and I are 18 yrs apart. I lived w my father since
13 due to constrained living arrangements at my moms. I went to college, graduated came home due to a job. I never agreed to taking on care for my brother full time. She thought my aunt would but she sadly past before the stroke. There’s other family members but they’ve uninvolved themselves since she was released and improving. My mother loves the Casinos and has been on several trips since the stroke with my brother to the casinos by way of bus or plane. Most recently she went to Vegas and is planning another trip around my bday/ time to renew lease. She only feels pressure to move when I vocalize the situation to her, yet still has no arrangements in place for her or my brother. We met a new case manager this week. When I bring up finding him care it is immediately met with but my money will stop, by my mom. I offferwd to give her the house and I’ll find elsewhere even w housing being stupid expensive right now. Do you stay together for the sake of everybody? Since the resources available aren’t helping, I’m uncomfortable, my baby is seeing dysfunction, same as I did growing up. I never wanted any of this or planned to live w my mom again as I tried very hard to get out her house as a child. Why? Schizophrenic unpredictable uncle made me feel unsafe, small home no room to myself, changing brother in front of me. While this isnt exactly the same for my daughter it’s still too close and not the upbringing I wanted for my child. My kids dad is confrontational, irresponsible & loose w his money just as much as my mom. Thoughts? Advise?

I’m at a breaking point and need honest advice from people who have been through something similar.

My brother is 50 and has severe cerebral palsy. My mom is 67, had a stroke in 2024, and years before that had a quadruple bypass. She’s mobile, but on a cane, gets winded easily, and has been medically advised not to physically care for him. Despite that, she is still his primary caregiver and gets paid through Medicaid to do so. For years, she has refused to let anyone else consistently help with his care because it’s been her source of income.

While she was recovering from her stroke, my child’s father stepped in because my brother had been in his wheelchair for days at the hospital alongside my mom and I without proper care. Ima be honest I am a petite female i can’t lift him and do what my mom does. Nor do I want to. My family and I honestly feel something should have been done along time ago to secure his care before I became of age, were 18 yrs apart. So sorry but I feel this is beyond my control and I honestly don’t want any parts. My child father Since then, has basically taken on caregiving full-time, but he’s either unpaid or barely paid. He’s DoorDashing instead of working a stable job because of this, and it’s not fair to him at all. My mom refuses to properly pay him because she says she’s paying on property she doesn’t want to lose. She also doesn’t think he does the job to her liking.

At the same time, she still travels and doesn’t prioritize getting stable, long-term help in place. The Medicaid provider has given options: either we pay someone ourselves or they assign someone—but she refuses to make a decision. So everything just sits in limbo while all of us struggle.

The living situation itself has a long history. Before her stroke, my mom and my brother lived with my aunt for about 18 years in an apartment that became hoarded. My aunt passed away, and I feel like my mom has continued that same pattern—very enmeshed, controlling the household setup, splitting bills in a way that benefits her financially, and avoiding long-term solutions. My aunt had even wanted a customized home with accommodations for my brother, but that never happened.

Now it feels like that same pattern is happening with me. She now wants her own place, but isn’t taking any real steps to get there. I was essentially forced to move both of them into my space. I only had one extra room, and I honestly feel like she would live like this indefinitely if no one pushed back. She only responds when we speak up—otherwise, she seems completely comfortable with this arrangement. In her mind, she has her kids and she has help, so there’s no urgency to change anything.

She also previously owned the home we grew up in, where we lived with my uncle who has schizophrenia and receives SSI. That home ended up being torn down after she fell behind on taxes. Now she’s focused on paying taxes on land with no house on it, while we’re all still in the same unstable situation. That money could be going toward proper care for my brother.

Financially, it’s frustrating. Both she and my brother spend money on online shopping, outings from adult day care, and trips to the casino. They’re planning a trip to Vegas in April, and during that time, there will be no caregiver in place. So I’m left wondering—how do I get out of this loop I never asked to be a part of. My child’s father helped as much as he could but got fed up of the pay since she would split it w him, she needs it for her bills still since that was her income before.

The situation at home is becoming unsafe. She tries to change and move my brother late at night while everyone is asleep. We’ve been woken up to her dropping him several times because she physically cannot lift him properly. It’s dangerous for both of them. And changes are needed multiple times a day since he soils, bawl movements etc. we’re not always at home to be on close watch and again my child’s dad sometimes refrains bc he’s no longer getting paid.

I also have to deal with constant assessments and people coming into my home because she wouldn’t allow them in hers due to hoarding conditions. Now everything has shifted into my space, and I’m overwhelmed.

I feel like I’m being forced into this situation. I’ve offered to move out, but if I do, she has no caregiver—and she’s already struggling to do it herself. Meanwhile, she’s not considering how hard this is on everyone else. It feels like we’re all being expected to suffer just so she can maintain control over his care and the income that comes with it.

I know many people genuinely want to care for their loved ones in this way. I’m realizing that I’m not one of those people, and that’s been hard to admit. I’ve dealt with this dynamic my entire life, and nothing I’ve suggested to improve their quality of life has been taken seriously.

I truly believe my brother would be safer and better cared for in a group home where he has trained staff, proper equipment, and consistent care. But suggesting that feels like starting a war.

So I’m asking:

When is it time to decide that a group home is the best option for a disabled family member?

And if a parent refuses to make necessary decisions—even when safety is clearly an issue—what options do you actually have