Progress of hallucination. Perhaps Lewy body.

My Dad is having very similar issues. We are going, finally today, to an outpatient geri psych eval. He is very resistant, and has become quite nasty to his wife and me, his daughter. He seems great to visitors and his memory is mostly intact. That makes it all really weird, because it can seem like he is just fine and just acting out. His hallucinations are so vivid and we no longer argue with him about them, after realizing that he believes them to be true. I am exhausted and sick from dealing with this...no idea what to do.

Again, my brother had Lewy's dementia and the hallucinations you are speaking of sound very like Lewy's Dementia to me. Lewy's hallucinations are like no other; full of fine detail. Very like waking dreams that cannot be forgot.

I would discuss with a good Neuro-psych MD.

No, from the head nurse. Perhaps I should say she is able to carry on a conversation, remember her appointments, make plans , tell a story accurately, remember birthdays, retell me about my sisters health situation accurately, tell me about her meeting with the CEO of her assisted living . But with all that she feels water on her floor, thinks her furniture is wet , sees her stalker watering the grass 24 hours a day , hears cars with raved up engines running in front of her window , deliberately to harass her, bull horn aimed at her window , the same man sprayed gasoline on her through her third story window , then another time her skin was burning because he sprayed her with antifreeze through her third story window when she looked at him watering.

I agree. If I had to say I would say Lewy's Dementia.
You are unlikely to get a definitive diagnosis, but she may end like my brother with "Probable Lewy's Dementia".
The hallucinations of Lewy's is VERY real. The situations described are like dreams but differ in that they occur when awake and they are well remembered and in DETAIL. For instance my brother might hallucinate that there is an immigrant woman in brown monk-like robes huddled in his corner hiding with her tiny baby. When he reaches out to touch her she is not there. Another hallucination I well remember is his telling me a long detailed description of he pool party outside his bedroom window. One man looked like, had hair like Elvis Presley and white shorts with a white towel folded over his shoulders. He would go on to describe many attendees of this party, and would tell me this was a dream, but he was awake, on his way back from the bathroom after getting up to pee.
There were other symptoms such as very very poor balance, occ. inability to swallow well with attendant choking, loss of smell and taste for some years prior to noticeable symptoms.

How can you say mom is cognitively fine when she's hallucinating and super paranoid all the time?? She may pride herself on whatever she'd like, but in reality, she suffers from anosognosia and needs Memory Care yesterday. That she or you cannot recognize her own deficits does not mean they do not exist! Get mom to her PCP for some calming meds right away. She does not need a neurologist to diagnose an obvious dementia disorder. A simple MoCA or SLUMS test will do that in 15 minutes. My mother had several small strokes and TIAs and wound up with vascular dementia as a result.

Good luck.

Other causes for hallucinations besides UTIs and LBD:

"1. Neurological or Brain-Related Causes

These can worsen existing hallucinations or mimic dementia progression:

- Stroke or mini-strokes (TIAs): Even small ischemic events can suddenly increase confusion and cause vivid hallucinations.
- Seizures (temporal lobe or focal): May cause short episodes of visual or auditory hallucinations, sometimes mistaken for “seeing people.”
- Brain tumors or metastases: Though less common at 95, can distort sensory processing.
- Migraine aura without headache: Unusual but possible; can cause flashing lights or visual distortions.

2. Metabolic or Organ Imbalances

Aging bodies have difficulty maintaining normal chemical balance; even mild shifts can cause hallucinations.

- Electrolyte imbalances — especially low sodium (hyponatremia) or high calcium (hypercalcemia).
- Dehydration — very common in older adults and often overlooked.
- Hypoglycemia or hyperglycemia (especially in diabetics).
- Renal (kidney) failure — buildup of waste products in the blood (uremia) can cause confusion and hallucinations.
- Liver failure — toxins (like ammonia) can cause hepatic encephalopathy, leading to vivid hallucinations.
-Thyroid dysfunction — both hyper- and hypothyroidism can cause mental disturbances.

3. Medication Side Effects or Interactions
One of the most common culprits in elders. Drugs that can trigger or worsen hallucinations include:

- Pain medications (especially opioids) — morphine, oxycodone, tramadol.
- Anticholinergics — found in bladder meds (oxybutynin), some sleep aids, allergy meds (diphenhydramine/Benadryl).
- Parkinson’s meds — levodopa, pramipexole, etc., can increase hallucinations.
- Steroids — prednisone and others can cause steroid psychosis.
- Benzodiazepines or sleep meds — lorazepam, temazepam, zolpidem.
- Certain antidepressants or antipsychotics, especially those that increase dopamine or serotonin.
- Polypharmacy — the combined effects of many drugs, even if each is mild on its own.
(At 95, even a new antibiotic or cold medicine can trigger delirium.)

4. Cardiovascular and Oxygenation Issues

When the brain isn’t getting enough oxygen or blood flow, it can misinterpret sensory input.

- Congestive heart failure or arrhythmias — can cause low oxygen to the brain.
- Low blood pressure or orthostatic hypotension — brief drops in brain perfusion can cause “fainting spells” with visual distortion.
- Anemia — reduces oxygen delivery to the brain.
- Respiratory illness — pneumonia or COPD exacerbation leading to hypoxia.

5. Other Infections (besides UTI)

Any systemic infection can precipitate delirium and hallucinations:

- Pneumonia (bacterial or viral)
- Skin or soft-tissue infection (cellulitis, bed sores)
- Sepsis — can cause rapid cognitive decline and vivid hallucinations even without fever.

6. Sensory Deprivation or Overstimulation

- Vision loss (macular degeneration, cataracts) can cause Charles Bonnet syndrome — clear, detailed visual hallucinations in otherwise mentally healthy people.
- Hearing loss can lead to auditory misperceptions (hearing voices or music that isn’t there).
- Overstimulation (noise, TV, new environment, hospital stay) can overwhelm an already fragile brain."

Source: ChatGPT5

You provide a laundry list of her imaginings, her paranoia and her resistance to things a person with intact reason and logic wouldn't be doing or saying. Then you write, "...she is cognitively fine."

No, she's not.

"...what point will she begin to loose her cognitive abilities?"

I agree that Lewy Body dementia may be the issue. It is anyone's guess how it will progress since everyone is different. There are medications specific to address the hallucinations but she has to willingly take them, and they don't work 100% or forever.

From ChatGPT5:

"Lewy Body Dementia (LBD) is a progressive neurodegenerative disorder, and by age 95, the disease is typically in an advanced stage—especially if constant hallucinations are present. The trajectory of symptoms can vary by individual, but here’s what is generally observed in this phase:

1. Hallucinations and Delusions

Visual hallucinations (seeing people, animals, or patterns that aren’t there) are hallmark symptoms and often increase in frequency and intensity over time.
Delusional thinking may accompany them—such as believing people are in the house, possessions are stolen, or caregivers are impostors (called Capgras syndrome).

Hallucinations can sometimes seem pleasant or benign early on, but as brain function declines, they can become frightening, confusing, or constant, as you describe.

Medication (particularly antipsychotics) must be used with extreme caution; many can worsen symptoms or cause severe reactions.

2. Fluctuating Cognition

People with LBD often have extreme fluctuations in alertness, attention, and coherence — lucid one moment, then drowsy or unresponsive the next.
These fluctuations may become more pronounced and last longer as the disease progresses.

Periods of confusion can dominate the day, with only short moments of clarity.

3. Parkinsonian Movement Problems

As LBD advances, motor symptoms similar to Parkinson’s disease worsen: stiffness, tremors, shuffling gait, and freezing when walking.

Balance issues often lead to frequent falls, which can be dangerous in the elderly.
Eventually, mobility may be lost, requiring full assistance with transfers and toileting.

4. Sleep Disturbances

REM Sleep Behavior Disorder (RBD) — acting out dreams — is common early but may decline as the person becomes weaker or more sedated.

Sleep-wake cycles become irregular; the person may sleep much of the day or be awake and restless at night.

5. Autonomic and Physical Decline

Swallowing difficulties (dysphagia) can appear, leading to aspiration risk and weight loss.

- Bladder and bowel incontinence become frequent.
- Orthostatic hypotension (blood pressure drops when standing) may cause dizziness or fainting.
- Overall frailty, muscle loss, and susceptibility to infections (like pneumonia or urinary tract infections) increase sharply.

6. Emotional and Behavioral Changes

Anxiety, agitation, depression, or apathy may appear intermittently.
The person may seem emotionally detached or unaware of their surroundings.
Outbursts or sudden fear triggered by hallucinations are common.

7. Late-Stage and End-of-Life Progression

In very advanced stages:

The person becomes bedbound or mostly unresponsive.

Communication fades; speech may be limited to single words or none at all.
Hallucinations may persist, but the person’s ability to express or react to them diminishes.

- Feeding, hydration, and breathing become difficult.
- Death often results from infection (pneumonia), aspiration, or general systemic failure rather than the dementia itself.

Palliative and Comfort-Focused Care

At this age and stage, most families and physicians emphasize comfort, safety, and emotional support, rather than aggressive medical intervention.

- Non-drug approaches (soothing voice, familiar music, gentle touch, consistent routines) often help more than medications.
- Hospice or palliative care can provide symptom relief and caregiver support."

I'm sorry your mom is having these problems. I don't have any suggestions. I do think that referring to her as "cognitively fine" is inaccurate, however, given the hallucinations.