Rapid Mental Decline in My Mother (65): Desperate for Diagnosis, Care

Hello, I’m looking for guidance about how to get help for my mother, who has experienced rapid mental deterioration over the past year with a cycle of repeated hospitalizations and psychiatric decompensation at home. The situation is placing an unsustainable level of strain on my mother, father and the rest of our family. We need help securing a definitive diagnosis and finding longer-term care options before her condition worsens further. Any insights on recommended testing, navigating legal/insurance barriers, or locating a facility that can accommodate her complex needs would be greatly appreciated.

My 65-year-old mother, living at home in the San Francisco Bay Area with her supportive husband (age 68) and two sons nearby, has suffered a rapid and severe mental decline since returning from a month-long trip to Vietnam and Cambodia in February 2024. Previously, she was high-functioning—working full time, cooking daily, exercising, active with friends, and was deeply caring for and involved with her sons. She had only mild, seasonal depression (1–2 weeks/year), mild insomnia, and urinary retention issues leading to occasional UTIs. In the last few years prior to 2024, family members noticed very subtle signs of cognitive slowdown (occasionally losing track of conversations or movie plots), though it was unnoticeable most of the time. Family history includes Parkinson’s (her father) and probable bipolar disorder (mother/grandmother).

She contracted a mild case of COVID on her trip and also reported poor sleep while abroad; upon returning, she developed profound depression, anxiety, and psychosis, plus repeated episodes of inconsolable yelling with “verbal loops” and suicidal ideation lasting for hours. She also sometimes complains of tinnitus (ringing in her ears), and frequently claims not to have slept for several nights in a row—though hospital staff and her husband have observed her sleeping soundly at times when she insists she has not slept. She no longer talks to friends, does not communicate proactively with family, rarely leaves the house, and has completely stopped cooking, driving, and exercising. She’s lost drastic amounts of weight (down to ~90 lbs at 5’8” at one point) due to months of reduced appetite and sometimes flat-out refusing food for days at a time. While she sometimes reports tingling or neuropathy in her limbs, she doesn’t show any motor or gait issues. Between crises of suicidality and agitation, she often appears emotionally flat and is very quiet, with her eyes somewhat glazed over.

Since February 2024, she’s been hospitalized and discharged eight times, ranging from short 2–3 day emergency holds to stays of up to a month in psychiatric facilities. Typically, she’s admitted on a 5150 or 5250 hold for suicidal ideation but is released once the ideation subsides or if a medical complication (often a UTI) forces a transfer out of psych. (Although she had recurrent UTIs for a while, they seem resolved now, yet her psychiatric symptoms persist.) My father has had to call 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 ongoing suicidality, agitation, and repeated crises (including attempts to flee facilities and impulsive aggression—she has struck and bitten staff), doctors say she retains decision-making capacity, making a long-term LPS conservatorship difficult to secure. At home, she quickly decompensates—often within weeks—forcing another hospitalization. Multiple psychiatrists have remarked on the unusually rapid pace of her decline (she was fully functional 10 months ago) and said they rarely see cases like hers.

She frequently refuses diagnostic exams (e.g., lumbar puncture) and has been unwilling to complete inpatient cognitive testing (facilities insist it be done outpatient, but she decompensates before appointments). A wide range of blood tests (CBC, CMP, autoimmune panel) and imaging (MRI, CT) have returned normal, leaving her doctors stumped. She tried multiple psychiatric meds—Ambien, Clonazepam, Propranolol, Effexor, Remeron, Auvelity—yet never stuck with any for more than a few weeks. None of these medications have produced a noticeable improvement. She underwent 12 rounds of ECT, only to abruptly quit claiming it was “frying her brain”. She attempted Transcranial Magnetic Stimulation (TMS) but also stopped after two sessions. One psychiatrist strongly suspects a dementia process despite normal imaging.

It’s now January 2025, and there has been no improvement in her condition. She’s once again decompensating at home, and it’s highly likely she’ll need another psychiatric hospitalization very soon. Meanwhile, my father (her primary caregiver) cannot safely manage her alone, and we still can’t secure longer-term placement due to her resistance, frequent discharges, and the lack of a definitive diagnosis.

We desperately need advice on (1) pursuing a clear diagnosis given her repeated refusals and outpatient cancellations, and (2) finding a stable, longer-term care solution that won’t discharge her prematurely. Any ideas on next steps for comprehensive testing, possible diagnoses, or navigating the legal and insurance barriers in California would be immensely appreciated.