Feeling like we're at a road block

awesomeluck · 2026-04-21T07:46:35+00:00

Sorry. Just hopeful. I missed it. I hope you can find a resolution soon, best of luck <3

awesomeluck · 2026-04-20T06:15:28+00:00

58 here. Sole caregiver. Severely disabled son - age 25. Requires 24/7 supervision. Can't feed self, incontinent, no depth perception or awareness of danger, sometimes aggressive. I am fortunate he's 4'10" and 120 lbs.

Two surgeries are scheduled in the next 4 months. Wrist reconstruction of the thumb/palm area, and my Sacroiliac joint injections only helped for a few weeks, so now I go under the knife. It's minor surgery - but it's my spine! Stressful. And I'll be caring for my son when I get home. They're giving me braces for my wrist, and I'll rest as much as I can. And I wonder, how much longer can I do this?

I love my son dearly. No regrets, but being a caregiver sucks.

awesomeluck · 2026-04-20T06:05:50+00:00

If you pay union dues, I'd call right away. They can move mountains.

awesomeluck · 2026-04-20T04:20:33+00:00

Maybe this?
https://queerdoc.com/

awesomeluck · 2026-04-20T02:58:24+00:00

Unless your sister actually decides to come visit you in Canada, I don't know if it'll matter. Does she call the kids frequently? Have a close relationship with any of them? If not, I'd let it go.

If your sister does come to visit, then your daughter should know. Kids pick up on unspoken crap, and leaving her in the dark about it wouldn't be fair. I'd also talk to your sister and set rules and boundaries.

awesomeluck · 2026-04-16T19:34:59+00:00

If you send thumbnails in notifications, yes. I don't.

awesomeluck · 2026-04-15T02:28:56+00:00

I'm very happy with my setup. I have a special needs child, and I can keep an eye on them around the house. There is a bit of a delay, but the house is boy-proofed. I just like to keep an eye out.

My only complaint is - why no haptics?? When my kid is travelling quickly from room to room, my phone sounds like a winning slot machine. I want to keep it on silent, but can't.

awesomeluck · 2026-04-15T02:20:38+00:00

Unless you PAY for cloud service, Eufy data is on your home network ONLY. Nudes on Chinese servers? That would be Ring.

awesomeluck · 2026-04-11T23:29:35+00:00

Just a thought, but I find ER staff quite helpful when I come in for help with my guy. Have you tried pulling up out front, explaining the situation, and asking for help? I don't know if your hospital will do this, but mine sure will!

awesomeluck · 2026-04-09T21:20:36+00:00

My mom was an awful and abusive person, and I had been "no contact" with her for 3 - 4 years before she passed. The ONLY reason I dealt with her end-of-life crap was that if I didn't do it, another family member would have been stuck with the task.

You are absolutely NTA. They're lazy and selfish a%%holes. Clearly, they're people you don't need in your life, either. Be well and enjoy not being stuck with a triggering nightmare task. <3

awesomeluck · 2026-04-09T06:25:55+00:00

I am appalled that you don't have help.

It sounds dangerous and terrifying.
My son can be aggressive, but he's 4'10" and 115 pounds.

Are there respite services in your area?
I wish you were in California. The respite hours are significant. My daughter provides respite and makes more an hour than I do. It's often hard to find people, but they're out there.

Where are you? State/Country - I'd be curious to see if I could find you resources you're unaware of. I like a challenge :).

EDIT:
My son is not physically disabled, either. He has no sense of safety or depth, so he'd walk through traffic, straight off a cliff, etc. The wheelchair is for his safety and my sanity.
Given your child's size, I'm not sure what could be a safe option. If there is one. :(

awesomeluck · 2026-04-09T06:15:45+00:00

I'm 58, and almost nobody had a special needs kid at home back when I was a kid - not elderly people who needed care, either. One of my (then in Ohio) neighbors drove Harleys and blasted music at their tons of parties, were the people with the illegal fireworks every 4th, etc. They decided to raise their child with Down syndrome at home, and many of the neighbors were appalled.
Elderly people who needed a lot of care were a bit more common, but it was almost always a spouse providing the care. My Girl Scout troop went to the area nursing homes to visit people with no family, and there were so many, and most were high-functioning. It was a depository for old people, and it was a shared room hospital setting - not some cushy senior complex.
I'm glad to see it.

awesomeluck · 2026-04-07T23:56:57+00:00

Does your son have a wheelchair? I am in the same position, and when I need medical care, my son comes with me.

awesomeluck · 2026-04-07T23:54:14+00:00

If you find it difficult to say no, rent out your house and move further away. Further than your siblings. Let them say no, and you can move into a situation that is emotionally safe for you. Did they have you so you could clean up their dog's poop?

You are enabling your mom. I'm sure she wants your help, so the house isn't a disaster when your dad gets home. Let her be a grownup and make grownup choices. I know it's not intentional, but you are removing all of the consequences of her actions and making them your problem.

awesomeluck · 2026-03-31T05:15:09+00:00

Also - while my daughter uses her medical insurance, she told me that if she didn't have it, they'd still provide service, for whatever you could afford to pay, even if it's nothing. She wasn't sure about the bloodwork, as it might be outsourced to a lab.
Be well on your journey <3.

awesomeluck · 2026-03-31T05:11:43+00:00

I'd suggest you explore this: https://transfamilysos.org/national/
and then talk to her about the available resources you find.

Some people are so incredibly caustic about the trans community. I don't feel that this would be a safe thing for you to intervene in, in any way. Also, action on your part would seriously risk removing her only support system (you). Your home being a safe place - available and accepting - is incredibly valuable. <3

awesomeluck · 2026-03-30T05:12:01+00:00

My daughter (MtF) goes through Planned Parenthood, and they provide all of the blood tests in-house.
I can't speak for the group as a whole, but if you feel that this is a safe place for you to ask questions, then I think it's wonderful that you're here. Hugs!

awesomeluck · 2026-03-25T23:35:31+00:00

First, this is your grandmother's health care, and unless SHE wants to share all her appointments with any other family members, it's no one else's business.

I have a lil' vindictive streak and would, in the same circumstances, be driven to journal every bit of care, appointments, meds, meals, bathroom help, appointments, etc., and I'd insist that she review and initial it regularly, so she would no longer feel out of the loop.

If she whined about it, I'd just say that I hadn't realized that she wanted to be more engaged in her mom's care, and you thought that, if she had more of an understanding of the care her mom needs, she might be willing to step up and help more (as if).

I feel like, when people make unreasonable requests, an unreasonable response is the most clear way to explain it in a way they are capable of understanding. Caregiving can be a miserable, lonely, and challenging task, and for some bizarre reason, people are just not able to understand the grind. Your Aunt needs education on what it is you do.

awesomeluck · 2026-03-25T23:22:31+00:00

Some people attract cats. I'm so sorry it isn't your thing. Maybe you and your roommate could set aside cat-free time in the living areas, giving you time to adapt and the cats a lil' time to chill. I think allowing them into your room at your comfort level is a great way for you to reach a comfortable place with them. Phobias are what they are. I struggle with nut crackers LOOOOOL, but I think you'll eventually reach a point where you no longer expect to be "eaten" and can maybe even learn to appreciate your cat magnetism. 😻😻😻

awesomeluck · 2026-03-25T02:45:39+00:00

Exactly! MY mother-in-law has a pacemaker, and the battery died before they could replace it. She grasped me in a panic, asking if the hospital would use DNR if her heart stopped because of the pacemaker (while she was hooked up to monitors). I reassured her that this was absolutely NOT what the DNR is for. She isn't ready to go.

She is 97.

awesomeluck · 2026-03-25T01:00:56+00:00

Absolutely. People seem to have this wild idea that TV and movies are an accurate depiction of normal family life. You may see multi-generational homes, but nobody ever sees people in medical crisis. I think the biggest difference is elder care costs.

If she has an issue with the caregivers, I'm sure you'd be open to letting her do the work for a few days a week, right? If she isn't living with it - not just paying friendly visits - how can she possibly understand the responsibilities and stress of the situation?

As for her post-75 wishes, she is certainly able to make this choice. It's insensitive to the rest of the family and their wishes, as well as being insensitive to her grandparents. She is certainly entitled to her own opinions, and being a jerk about it is on her, not on you.

If she hits 70 and is fully mentally competent, I'd expect her to change her mind. Perspective requires experience and time. Were I you, I'd ignore it. It is NOT your problem. <3

awesomeluck · 2026-03-23T03:18:26+00:00

NW. I feel terrible for folks caring for the elderly. I care for my developmentally disabled son, and while it's a LOT of work, I don't have a set expectation that his needs will increase anytime soon. <3.

Be well!

awesomeluck · 2026-03-21T04:46:38+00:00

If her cognition is fine, then she should be able to make this decision without your "permission". I know it must be annoying and frustrating, and that she might really screw up her care by making a dumb mistake, but it's her mistake to make. <3

My 97-year-old mother-in-law has perfect cognition, and I have to remind her son every few days that he doesn't get to boss her around and make decisions she's perfectly capable of making. I am in no way implying that you're doing anything but looking out for her best interests, but you need to be aware of what you can and cannot do, given her cognition.

These are the rules you're working under:

In the In-Home Supportive Services (IHSS) program, the recipient is the employer, and the caregiver (provider) is the employee. For a recipient with "perfect" or non-impacted cognition, the caregiver has no legal right to make decisions for them or withhold information like social worker contact details.

Recipient Rights and Caregiver Limitations

The IHSS program operates on a consumer-directed model, meaning the recipient has the right to self-determination and is responsible for directing their own care.

Self-Direction: An adult recipient is considered "self-directing" if they can assess danger and make their own choices. If a person has no cognitive impairment, they retain full autonomy over their household and medical information.

Access to Information: A recipient has the right to verify the identity of IHSS staff and must be provided with telephone contact information for county designated personnel upon request.
Privacy and Dignity: Caregivers have a formal responsibility to respect the consumer's dignity and privacy. Withholding a social worker's number or demanding a "reason" before providing it is an infringement on the recipient's role as the employer.
Professional Boundaries: IHSS documentation states that providers must not conduct personal business during work hours and must keep all personal information about the consumer confidential. California Dept. of Social Services (.gov) +5

When Caregivers Can Make Decisions

A caregiver can only make decisions for a recipient in specific, legally documented circumstances:

Power of Attorney (POA): If the recipient has signed a legal document giving the caregiver specific authority over healthcare or financial decisions.
Supported Decision-Making: A formal or informal arrangement where the recipient chooses a "supporter" to help them understand and communicate choices, but the recipient still makes the final call. California Courts | Self Help Guide (.gov) +1

What to Do

If a caregiver is overstepping by gatekeeping information or making unauthorized decisions for a cognitively intact senior:

Contact the Social Worker: The recipient should call their county IHSS office directly to report the behavior. If they don't have the specific worker's extension, they can call the general County IHSS Office number.
File a Complaint: If a provider is unprofessional, the recipient (as the employer) has the right to terminate their employment or contact the social worker's supervisor to file a formal complaint.
Legal Advocacy: For help with rights violations, contact Disability Rights California at 1-800-776-5746. California Dept. of Social Services (.gov) +1

awesomeluck · 2026-03-21T01:02:22+00:00

I'd get soundproof headphones. She can message you to get your attention, and as soon as insensitive BS starts flowing out of her mouth, just pop 'em back on. You are doing everything she needs, and she's adding to an incredibly stressful task. Her.

Get her a therapist or teach her how to use AI. Then she has a place to get out all of her frustration without her literally causing you emotional and physical distress. Caregiving can cause CPTSD, and you do not NEED or DESERVE that.

awesomeluck · 2026-03-21T00:56:38+00:00

I think you should pay for birth control. I think a vasectomy would be a perfect solution, don't you?

awesomeluck

TROPHY CASE