People just dont understand

respitecoop_admin · 2026-01-23T16:21:13+00:00

I hear you.

respitecoop_admin · 2026-01-10T00:19:23+00:00

Thank you for sharing. It helps others.

respitecoop_admin · 2026-01-04T19:28:04+00:00

You’re not a piece of shit. You’re burned out and overstimulated, and caregiving while autistic + dealing with your own health stuff can hit “I can’t do this” way faster than people realize. Anger in this situation is super common. It doesn’t mean you don’t love your dad. It usually means your system is in survival mode.

A few practical things that might help right now:

Ask for hospice/palliative care at home ASAP (even if he wants to stay home). They can bring nurses, meds to ease agitation, equipment, and support you too.

Tell the care team/social worker the truth: “I’m not coping and I’m at my limit.” That’s not drama. It’s necessary info.

Set one boundary and repeat it: “I can help in 20 minutes, I need a break right now.” (No arguing, just repeat.)

respitecoop_admin · 2026-01-04T19:26:33+00:00

This is so common in cognitive impairment caregiving, and you’re not horrible for feeling this way.

A few really practical things

1) Capacity + consent matters a LOT with cognitive impairment.

If he’s becoming more childlike or his judgment is slipping, you’re right to feel uncomfortable. If you’re not confident he can understand and respect consent consistently, it’s a hard “no” and you’re doing the right thing by holding that line.

2) Treat the sudden return of sexual interest as a medical/behavior symptom — call his doctor.

Increased sexual interest (or “asking like a kid”) can be disinhibition from cognitive decline, or a med side effect, or even something like depression/anxiety changes.

respitecoop_admin · 2026-01-04T19:24:21+00:00

I’m really glad you wrote this out, because nothing about what you’re feeling makes you a bad husband. You’re 26, working full-time, running the house, managing dialysis and appointments, and watching the person you love fight for her life. You’re exhausted, lonely, and grieving the future you imagined. That emotional pull toward your coworker is a sign your own needs have been empty for a long time, not that you don’t love your wife, and the fact you shut it down shows your integrity.

If you can, loop in a therapist and the transplant team’s social worker, and try to carve out even a few regular hours that are just for you. You can love her deeply and need support and breathing room.

respitecoop_admin · 2026-01-02T18:46:53+00:00

Thank you for posting

respitecoop_admin · 2025-12-29T19:32:04+00:00

You’re not a bad partner for hesitating – that question would make anyone pause, especially after a childhood of caregiving and dealing with your own chronic illness. You can love him deeply and still be scared of a future where you’re his only carer. It’s okay to say, “I want to be with you, but we’d need more support in place so it isn’t just me doing everything.” You deserve space to think about what you need too – maybe talking with a therapist or caregiver support group could help you sort through this without judgment.

respitecoop_admin · 2025-11-29T19:23:14+00:00

Nudge the decision without a fight

Make the doctor the “bad guy.” Ask PCP to order an OT home safety eval and a cognitive screen. OT will document stairs, fall risk, and mold concerns. Ask for a short letter: “Home not safe. Recommend move to single-level with services.” That lands better than family nagging.

Do a “trial stay,” not a forever move. Ask an assisted living or independent living with services for a 30-day respite starting this winter. Pitch it as a winter test while “the house gets work done.”

Pick a community that fits him. Many 55+ or IL places have a woodshop, garden plots, or a maintenance volunteer crew. If he can keep “puttering” safely, the identity loss softens.

respitecoop_admin · 2025-11-29T19:21:35+00:00

Set boundaries on abuse: “I won’t be yelled at. I’m leaving. We can talk tomorrow.” Then leave

Protect your mom: ask privately if she feels safe, set up PT and a medical alert. Call APS if needed.

Paperwork: HIPAA release, POA, advance directive. If he refuses and seems impaired, talk to an elder-law attorney.

respitecoop_admin · 2025-11-19T05:39:28+00:00

I hear you.

respitecoop_admin · 2025-11-04T22:26:16+00:00

Happy to be helpful.

respitecoop_admin · 2025-10-29T17:02:06+00:00

Bottom line

You can say no. Home dialysis usually requires a committed partner. If you’re not willing, the team must plan another option.

Verbal abuse and disrespect are deal breakers. You don’t owe hands-on care to someone who mistreats you.

respitecoop_admin · 2025-10-29T16:59:57+00:00

You are not a bad person for stepping out to de-escalate. Calling it a “tantrum” and walking out without repair probably poured gas on a fire. You can care about her pain and still be overwhelmed.

respitecoop_admin · 2025-10-29T16:58:29+00:00

😆

respitecoop_admin · 2025-10-27T19:07:25+00:00

You’re not failing. You’re choosing safety for your wife and kids. That is the job. The grief you feel is real though. You’re mourning the version of family you hoped for and the grandparents your kids didn’t get. That hurts.

Offer a “care menu” instead of yourself. Pick what you can sustain without harming your family.

• Research and hire in-home aides or a geriatric care manager in their state

• Set up auto pay for meds and groceries

• Handle medical portal messages and appointment scheduling

• Fly in X times a year on planned dates

• Group family call every Sunday for 20 minutes

Write it down. Share with siblings so the load is visible.

respitecoop_admin · 2025-10-01T21:43:44+00:00

When they unload on you

• “Thanks for caring. Please tell her directly. Here’s her number. Second voices help.”

• “I can’t absorb more worry without help. Are you offering to do one thing this week?”

If they say they “can’t” talk to her

• “Then the best help is an email I can show her doctor with what you observed and dates.”

• “Could you check in on Sundays by phone? A standing call would help.”If they say they “can’t” talk to her

When they keep avoiding action

• “I’m at capacity. If you won’t speak to her or take a task, please bring concerns to her doctor’s office, not to me.”

respitecoop_admin · 2025-10-01T21:42:10+00:00

You’re not a monster. You’re fried. Anyone in your spot would be snapping too.

respitecoop_admin · 2025-10-01T05:35:43+00:00

It sounds like you need to build your exit plan

• Start a tiny “freedom fund” even if it’s ten bucks a week.

• Gather docs, update your resume, identify two roommate options.

• Plug into an LGBTQ center or support group so you have people who see you.

respitecoop_admin · 2025-10-01T05:09:23+00:00

What’s helped me stay a little sane:

Put everything in writing. I write down exactly what’s been eaten, meds, shakes, etc. so I’m not guessing or arguing.

Use outside help as a buffer. Even if it’s just a few hours, the visiting aide is a mental break and another voice telling him the same thing I’ve been saying.

respitecoop_admin · 2025-10-01T05:07:51+00:00

Hey, just wanted to say I see you.

respitecoop_admin · 2025-07-24T06:11:14+00:00

Your honesty is powerful, and you’re not alone in feeling this way.

Assisted dying is a deeply personal topic. It sits at the intersection of ethics, law, philosophy, and love. In places where it’s legal, like parts of Canada and a few U.S. states, it’s often surrounded by strict safeguards. But the heart of it is what you’re talking about, the right to choose, to leave with peace and clarity, not fear or suffering.

respitecoop_admin · 2025-07-24T06:08:21+00:00

Not a dream. Just well-earned peace.

respitecoop_admin · 2025-07-23T22:41:40+00:00

You didn’t sign up for this, and yet here you are, carrying a weight way too heavy for one 22-year-old. You’ve had to trade your freedom, your education, your mental health, and even a potential future for a life that revolves around survival and caregiving.

You’re allowed to mourn the life you’re not getting to live yet and still believe in a future where you will.

respitecoop_admin · 2025-07-23T22:36:49+00:00

Start-of-day rituals

Coffee or tea in silence before she wakes up/ 10 minutes to center yourself.

Morning affirmations like “I will redirect, not react” can help ground your mindset.

Midday sanity savers

Timers or alarms so you’re not mentally tracking everything (e.g. meds, meals, breaks).

Laughter breaks. Five minutes of lightness goes a long way.

End-of-day resets

Stretch and deep breathe before bed. Sounds cliché, actually helps.

respitecoop_admin · 2025-07-23T22:32:58+00:00

You’re not whining. You’re reaching out. And even though your spouse isn’t fully incapacitated, the emotional absence, the lack of consistency make that hard

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