Rapid Mental Decline in My 65-Year-Old Mother: Desperate for Diagnosis and Long-Term Care Solutions

mymomneedshelp

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.

harshedbuzz

@mymomneedshelp

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

It sounds as though much of what you're seeing might be the intersection of mental health issues and dementia. It can be very tricky to tease these kinds of situations apart.

It will be difficult without your mom's consent to get a comprehensive evaluation— imagining is a pretty blunt instrument in dementia-diagnostics. It's mostly to rule out lesions and stroke although in later stages there are characteristic changes seen.

Her age makes this complicated. If she does have an early onset dementia (symptoms before age 70), it's likely the doctors will be looking to rule out other causes. When she is taken to the ER, is she being transported to a university teaching hospital? If not, that might be your best option. It might also be useful to see if she could be transferred to a geriatric psych unit as they'll have more expertise around dementia.

Her treatments so far are not typical of what many here have seen with their LOs. ECT can be associated with memory loss and an ability to learn new information. Many patients do report a disturbing loss of memory. Some of the medications prescribed are not the usual. Auvelity was a first for me— Wellbutrin and cough suppressant. was Given her family history, I am surprised no one has trialed an atypical antipsychotic like Seroquel or Abilify.

That said, if she won't cooperate with an evaluation, there's not much you can do to make that happen. You may need to wait for a crisis to make it happen. You could talk with a CELA (certified elder law attorney) in your state to find out if there is an option to force the evaluation via the courts and conservatorship. I know a couple of people who had to use the courts for guardianship. The judge, in both cases, ordered the PWD to have cognitive testing. In one case this was a formality, but in the other the PWD got their own lawyer and fought in court. Despite a lot of cognitive reserve, his sons prevailed in court based on documented behaviors and his test results.

HB

housefinch

I agree with @harshedbuzz. I would definitely get legal advice from someone expert in guardianship/capacity etc because this sounds suspicious for cognitive deterioration causing neuropsychiatric symptoms. Did a consultation liaison psychiatrist ever consult on her in the hospital to assess her for capacity and decision making capability? She needs to see someone at an academic teaching hospital, where complicated cases are referred. I mean a neurologist in a Department of Neurology in a medical school. I would also wonder about frontotemporal dementia (behavioral variant) and even rare infections given her travel history (although a normal brain MRI might rule those out). Also, a geriatric psychiatry inpatient ward for her next hospitalization might have more resources (experienced social worker, etc) than a regular adult inpatient psychiatric ward. This situation has many challenging facets and is potentially beyond what a typical office neurologist will want to take on.

housefinch

Has she seen anyone in Neurology at UCSF or Stanford? If not, 1 of those would be my 1st stop. UCSF has a specialist inpatient Neurology hospital team. If your mom has a PCP maybe that doctor can advocate for an admission to their team next time? Sounds like she needs the medical evaluation prioritized, even if it means legal action taken to ensure that happens. Sorry for stating what sounds like the obvious here. I would probably really push hard on an elder law attorney to give you clarity for next steps. Until you have legal authority to take medical steps forward in her evaluation, she will keep getting “band aid” admissions to psychiatry. (I’m a physician-pediatrician-so understand I don’t know much about adults but am trying to recommend what I can.). If you have a PCP who can help advocate that would be a big help. Another resource might be an aging care manager or even a geriatrician concierge MD who could be an advocate. Forgive this rambling response—am just listing ideas because your situation is so challenging. Definitely focus on how to get mandated medical testing done (meaning—how do you legally mandate her getting tested). It ultimately might require anesthesia for a lumbar puncture, additional imaging and bloodwork. But obviously legal paperwork first because otherwise that require your mother’s informed consent—an issue here.

Victoriaredux

I'm not a medical anything -at all , but was she seen by a tropical disease specialist on the off chance her month in Vietnam and Cambodia gave her some infection , parasite ,something that triggered and made her baseline situation(s) [one of which may well be a dementia ] worse?

The major medical centers in the Bay Area all have infectious disease specialists/clinics. [Including UCSF AND Stanford] You can look one that has a Doctor who has an interest in those geo regions.

Again , just a idea , the old saying is when you hear hooves don't think zebras -think horses but maybe your Mom picked up a "zebra." I hope you can find something treatable.

["At home, she quickly decompensates—often within weeks—forcing another hospitalization." What is making her better at the hospital? What is happening at home that causes her to decompensate? Is your Dad able to provide her with access to water and food at regular times? Has the house been made safe so that she doesn't mistake a chemical for sugar, toothpaste etc.?]