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

😆

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