This is my intro (long)

Worried child

Sorry, long post inbound.

My mother, 84, smoked from teenager up until her mid seventies. College educated, very intelligent , sweet and kind, loves her family, art and nature.

Eight years ago had the flu, which led to a seizure, which Drs presumed was due to low sodium. In the hospital for a few days. The first night she was home, she had a violent psychotic episode and ended up back in the hospital. This they presumed was a bad reaction to Tamiflu, although her internist said this "could be the tip of the iceberg ." She rarely even loses her temper so this was very uncharacteristic. No further incidents,life resumes as normal.

Five years ago, a series of epileptic seizures. Placed on Keppra, seizures under control.

Three years ago, what she called a "panic attack" led to blood pressure spiking dangerously high. Ends up in the ER, BP drops, sent home. That night, another violent outburst. Back to the hospital, in ICU in a catatonic state for a couple of days. Neurologist says dementia, placed on Seroquel daily and Ativan as needed. No restrictions. Life goes on. She begins to have trouble balancing her checkbook, but nothing too major. My father begins to notice some personality changes, although they're subtle.

Last summer my dad had covid. He recovered and is fine, but the stress put her into a tailspin. Another catatonic state, back in the hospital overnight (no violence this time). MRI reveals past TIAs and some brain shrinkage. Dr says putting her through a lot of tests would do more harm than good, just manage the confusion with Ativan.  She gave up driving at this point on Doctors orders.  She didn't resist. She didn't like driving anyway 

So here we are nearly a year later. Some days she's nearly normal, other days can't dress herself. Yesterday she didn't recognize me, Ativan brought her back to reality within 30 minutes and she seemed like her old self. Today, confused again, but not as bad as yesterday. I'm wondering if these confused states are breakthrough seizures that the Ativan brings under control. Stress seems to trigger the episodes,not immediately but a few hours to a day later.  

These episodes are usually rather hyper. Maybe even a little manic at times.  Noteworthy because she's typically quiet and reserved.

Sorry for the long post, I just needed to unload my mind somewhere. If you read this far, any comments are welcome.

Worried child

Sorry about how the formatting came out.  I tried to break it into paragraphs but something went wrong.

Iris L.

Ativan is in the benzodiazpine class.  These meds, although used to treat seizures and anxiety, may have a paradoxical effect in older adults.  Instead of being calming, the can be stimulating, or cause memory loss and other cognitive changes.  Its use has to be carefully monitored.  Read about the Beers List of meds for older adults. 

Is she under the care of a neurology specialist?

Iris L.

towhee

Hello, Worried Child, welcome to the forum. Don't worry, your post is not that long. I am sorry for what you are going through. Others will come along tomorrow with more responses, but I will give what advice I can tonight. 

First, find another doctor. Find either a neurologist that specializes in dementia/memory care, or a geriatric psychiatrist. Just because your mother is in her eighties does not mean she does not deserve a diagnosis and appropriate care. Yes, there might be some tests you might not want her to go thru, but you need someone other than her internist to look at her current situation and medications. You do not mention if she is on a medication for dementia, the medications you mention are anti-psychotics, anti-anxiety, and anti-seizure meds.

All medications can have side effects, and the way they work may change over time. Ativan is a short lasting anti-anxiety med, but sometimes with some people, when the medication leaves the system, the symptoms the medication is supposed to help can actually get worse. Think withdrawal symptoms. You really need a doctor to review the meds she is on, a doctor who works with these meds a lot and understands them.

From what I read, I think part of the problem might be communication between patient/family and doctors. Are you actually present at doctor appointments, going into the exam room with your mother, is your father going in with your mother, are you getting info second hand? Sometimes information can get garbled, and sometimes, unless we pin them down, doctors don't explain very well. It is really important that we understand what is going on, and exactly what the doctors suggested treatment will do.

Worried child

She was diagnosed just as covid hit.  She had one appt with a neurologist  and everything came to a screeching halt.  For most of the time since she's been relatively ok. It's only in the last few months she's declined.  We live in a rural area and in her condition I don't know if the travel would be good for her.  Her internist isn't in favor of a hospital stay and a bunch of tests which he thinks may do her more harm than good. I guess it may be time to consider it

towhee

The usual tests to diagnose dementia are routine bloodwork, a brain scan (she has already had an MRI) and sometimes memory and cognitive testing that can last several hours. A diagnosis can be given without the memory testing. A stay in a hospital is unusual. Sometimes they will do an EEG to check for seizure activity but this can possibly be done without being in a hospital. 

I completely understand that a hospital stay is not desired, older people, especially older people with dementia, can develop delirium in a hospital setting.

I know this is hard, hang in there.

M1

Agree with Towhee that your post is not at all too long for a first.  Hope you find help here.

My partner is 82 and in memory care for a year.  She has a number of other medical problems and had had brain scans and routine blood work as part of the normal order of taking care of those other problems.  When she started showing clear signs of dementia, there was little else to do and she was not interested/willing to consider long bouts of neurocognitive testing. 
We had a good primary care doc who prescribed trials of both Namenda and Aricept, both of which promptly caused side effects and were discontinued.  As there was little else therapeutically available and she has multiple other chronic medications to manage, she never saw a neurologist as we thought it was a moot point.  That continues to be the case.  

I agree that it might be time for another opinion for your mom, not because more diagnostic testing would make a difference, but for the reasons already stated that Ativan and all benzodiazepines are not necessarily the best drugs to use in an elderly person with dementia.  Certainly I would have a long discussion with her neurologist.

Just a comment that if her low sodium was severe enough to cause a seizure, it was severe enough to cause permanent brain damage.  Likely you'll never know how much this contributed, but it can be lethal and certainly could have contributed to her decline.  Sounds like it was handled appropriately, and certainly nothing else you could do about it now.  I'm sorry and understand your concern.  Hope you and your family are planning for how to move forward to care for both of your parents.  Never easy.  

Worried child

Thank you so much.  Her internist said at the time that the medicines, were a balance between the possible side effects and controlling the violent outbursts. Which they have. He especially mentioned the Seroquel as a risk factor, but thought it was worth it.  

I agree it may be time for another look at the meds. A complicating factor is my father, 87 but physically and mentally capable (he still works with me part time in the family business).  He seems resigned that there's nothing that can be done medically.  

Meanwhile  I'm barely hanging on.  I'm not married and have no children,so nothing else to distract me.  I have one sibling who lives nearby and is somewhat involved.  Another sibling lives on the other side of the country and seems to have mentally checked out of the situation.  She hasn't visited in nearly a year and hasn't indicated that she plans to any time soon

 I'm losing weight (not intentionally) and my blood pressure is up.

Worried child

Also, there's a lot of variability in her mental status.  She went several weeks recently when she seemed nearly normal.  Other times she's "slightly off.". Other times she's pretty confused for several days.  Still other times she seems fine, then within the course of a few minutes she starts hallucinating and has delusions.

M1

WC are you familiar with Lewy Body dementia (LBD)?  Fluctuating symptoms and hallucinations are common features.  My sister in law died of it and had primarily motor, Parkinson-like symptoms for most of her course.  You might want to read about it.

Worried child

Thanks I know a little about it but I am in the process of learning more.  She has some of the symptoms of LBD but not others

Worried child

So this is how things have been going this week:

Last Saturday:. Completely fine.

Sunday. Fine until mid afternoon. Sudden agitation, confusions and hallucinations. Did not recognize me or my brother. Did not recognize family pictures on the wall, including herself. Ativan brought her back to reality. Seemed ok by bedtime.

Monday:. Confused again but better than Sunday.

Tuesday; completely fine got up,got dressed, made her bed, made her own breakfast and lunch.

Wednesday:. Completely fine. The lady who helps with housework came and she interacted with her completely normally.

Thursday:. A little...manic earlier in the day. ( She's typically quiet and reserved). Late in the day she was fine. Wrote out a detailed grocery list for me to pick up.

Friday:.Fine.  Great, in fact.  Seemed completely her old self.

Saturday:. A little manic again.

I'm still wondering if subclinical seizures are causing the fluctuations.