Looking for long-term care and diagnosis solutions for my 65-year-old mother following rapid mental decline.

Hello, I’m looking for guidance on how to help my mother, who has experienced rapid mental deterioration over the past year with repeated hospitalizations and psychiatric decompensation at home. The strain on my mother, father, and our family is unsustainable. We're seeking a definitive diagnosis and longer-term care options before her condition worsens. Any insights on testing, legal/insurance barriers, or facilities for her complex needs would be greatly appreciated.

My 65-year-old mother in the San Francisco Bay Area (living with my 68-year-old father, two sons nearby) has suffered a rapid, severe mental decline since returning from a month-long trip to Vietnam in February 2024. She was previously high-functioning—working full time, cooking, exercising, and active with friends. She had mild, seasonal depression (1–2 weeks/year), mild insomnia, and occasional UTIs from urinary retention. We’d only noticed subtle cognitive slowdown (occasionally losing track of conversations or movie plots). Family history: Parkinson’s (her father) and probable bipolar disorder (mother/grandmother).

After contracting a mild case of COVID during her trip and reporting poor sleep, she developed profound depression, anxiety, and psychosis, plus repeated episodes of inconsolable yelling (“verbal loops”) and hours-long suicidal ideation. She sometimes complains of tinnitus and often claims not to have slept for several nights, though nurses and family have observed her sleeping. She no longer socializes or communicates proactively, rarely leaves the house, and has stopped cooking, driving, and exercising. She lost drastic weight (down to ~90 lbs at 5’8”) from reduced appetite and sometimes refusing food for days. Occasionally she reports tingling or neuropathy, but no motor/gait issues. Between crises, she appears emotionally flat and very quiet, with a glazed-over look.

Since February 2024, she’s been hospitalized and discharged eight times, from short 2–3 day emergency holds to month-long psychiatric stays. Typically admitted on 5150/5250 holds for suicidality, she’s released once ideation subsides or if a medical issue (often a UTI) forces a transfer from psych (though her recurrent UTIs now seem resolved). My father has called 911 multiple times due to her severe distress and erratic behavior. She has left against medical advice more than once, and insurance or hospital policies often limit longer stays once she appears temporarily stable. Despite repeated crises—including attempts to flee facilities and aggression (she has struck/bitten staff)—doctors say she retains decision-making capacity, making a long-term LPS conservatorship difficult. At home, she decompensates within weeks, prompting another hospitalization. Multiple psychiatrists have remarked on her unusually rapid decline, as she was fully functional just 10 months ago.

She refuses many diagnostic exams (e.g., lumbar puncture) and hasn’t completed inpatient cognitive testing (outpatient appointments fall through when she decompensates). Extensive blood work (CBC, CMP, autoimmune) and imaging (MRI, CT) have been normal, puzzling her doctors. She tried multiple psychiatric meds—Ambien, Clonazepam, Propranolol, Effexor, Remeron, Auvelity—yet quit each within weeks. None showed clear improvement. She underwent 12 ECT sessions, then abruptly stopped, calling it “frying her brain.” She attempted TMS but discontinued after two sessions. One psychiatrist suspects a dementia process despite normal imaging.

It’s now January 2025, and her condition hasn’t improved. She’s decompensating at home again, likely needing another psychiatric hospitalization. My father, her primary caregiver, can't manage alone. We lack a definitive diagnosis and cannot secure longer-term placement due to her resistance and frequent discharges.

We desperately need advice on:
- Pursuing a clear diagnosis despite refusals and missed appointments.
- Finding stable, longer-term care solutions.

Thank you!