Is it the meds (anti-siezure meds added), or another step in the progression?

ReallyScaredSon

I'll start with the short summary of my question: my mom has recently experienced a number of changes (for the worse).  Is there any way of knowing if these are indicative of another step in her dementia progression?  Or is it due to other factors, such changes to her meds, including the addition of anti-seizure drugs?  Is there any way to know?

Fully story:

My mom entered a MC facility in February this year, following a two-week stay in the hospital.  Prior to that, she had been having, with increased frequency, severe episodes of delusions and extreme agitation in the middle of the night, starting around the second half of December last year.  She had virtually no formal medical evaluation prior, since even the slightest hint that something might be wrong sent her into a state of extreme agitation (including threatening suicide).

She was in the process of adjusting to life in the MC facility.  After being there for about a month, she had a tonic-clonic seizure in the morning during breakfast.  She has no history of seizures or epilepsy.  An ambulance was called, and while in the ER, she had another seizure.  So they admitted her to the hospital, and she was there for three weeks.

The loaded her up with Keppra as an anti-seizure "rescue med".  Keppra is known to cause agitation in some people, and with her already suffering from a lot of agitation, they switched to Depakote (valproic acid).  Once the Depakote was started, a day or two after the seizure, she basically became "snowed": she wouldn't open her eyes, was barely eating, having to be catheterized, etc.  They started lowering the Depakote dosage, and she slowly started to perk up.  But she was still overly lethargic, so they started the process of switching her to Lamotrigine.

They discharged her to a skilled nursing facility, and she was there for a few days.  She seemed to get more or less back to her pre-seizure self fairly quickly, and within a few days, was back to the MC facility.  That was about two weeks ago, IIRC.

Things never really got back to "normal" at the MC facility.  She seemed to have more ups and downs, more periods of agitation.  And then a couple days ago they increased the Lamotrigine, but did not decrease the Depakote (which feels like an oversight to me).  And with that she also started to revert back to the substantial lethargy, spending a lot of time in her room, in her bed with her eyes closed.

Last night my dad got a call from the MC facility, that when the nurse went into her room to find her to give her meds, she was on the floor, with what looked like a lot of blood (from a cut on her nose), and complained that her head hurt.  She had fallen.  She says she fell when getting out of bed, but doesn't know why she was getting out of bed.  They called an ambulance, took her to ER, where they did a CT scan to check for bone breaks or fractures.  No bone issues, so they sent her back to the MC facility.  There is some possibility that she had another seizure, but it appears we have no way of knowing.

This morning she ate a huge breakfast, but has since otherwise mostly returned to the extreme lethargy state.  She didn't eat anything for lunch, barely drank anything.  Her speech is garbled/nonsense.  And if you ask her to repeat herself, she gets upset.  My aunt (her sister) was there with her, and sent a text saying, "she's picking things out of the air and handing them to me."

The MC facility is not a skilled nursing facility (they made a point to let us know, when we moved her in, that when the end stage was reached, she would need to be moved to a more specialized facility).  And they essentially just told my dad this morning, that in her current state, she won't be able to stay there.

She now has a appointment with her PCP tomorrow morning, and my dad was able to secure an afternoon appointment with a neurologist tomorrow afternoon.  Of course we will listen to what they have to say.  But, I'm just trying to get some general feedback here, and of course, see if there are questions that absolutely must be asked and answered tomorrow.  I feel like some of her behavioral changes could be attributed to all the other changes in her life (seizures, med changes, the fall); but I also having this nagging in the back of my mind that the seizures were kind of a "marker" to indicate she's taken another step in the progression.

I was reading other posts prior to posting; someone linked this "Global Deterioration Scale / Reisberg Scale":

https://www.dementiacarecentral.com/aboutdementia/facts/stages/

It's hard to categorize her precisely.  Except for when she's "snowed", she's never had problems with ADLs.  Her short-term memory is practically non-existent.  She definitely has anxiety, but she also has a history of OCD (i.e. an anxiety disorder).  She was definitely having delusions during the episodes she was having just before moving into the MC facility.  Except during episodes, she doesn't seem to be forgetting the names of family members... since returning from the hospital last night, she's needed help walking.  A lot of things point to Stage 6 or 7... but some of that could be attributed to all that's happened to her recently, right?

As always, a huge thank you to this wonderfully helpful and supportive community!

May flowers

Sorry you are going through this. Everything you described could be a combo of the trauma, changes, different facilities. It can throw them for a loop. My FIL had a deep decline after moving from one facility to another due to a flood and another after surgery. He has regained some of the abilities before all of that but it was slow going. He lost others permanently, like the ability to walk.

The seizures themselves will cause a lot of confusion. My son has epilepsy and he is not himself for a week following a seizure. The meds also make him him drowsy and lose his appetite. He’s had the best success with an extended release med called Oxtellar.

I hope you get some answers soon.

Jean loves wildlife

So sorry to hear this story, and how scary to be her son and have no idea of what is causing the new issues.  I have no experience with this particular combination of symptoms, but it surely seems like all the different changes including the meds could have brought on more aberrant behavior than she had previously. I keep reading so many stories, and have some of my own, where changes are so confusing to the dementia patient and totally throw them off their usual routines. My mother and MIL with dementia used to have those kind of middle-of-the night episodes (one had delusions of being in scary situations like abandoned in a bus station, calling family to come and help (she was in a nursing home); the other saw "little men" attacking her car (she was in the house), and went outside to throw rocks at them as well as at other passing cars.  Another time she became agitated at something on the TV and started throwing rocks at the TV. She actually kept handfuls of small rocks in her chair for these throwing episodes. We attributed these delusions to sundowners. Also your mother's doctors put her on a succession of new and strong meds which can certainly trigger responses in the body. My only reply to your invitation to ideas to discuss with her doctors, is to try to get a clear explanation of why was each med prescribed, what was it intended to accomplish, and what are the possible interactions or side effects when all these are combined together with any other meds she has been taking.

Wishing you the very best as you try to help your mother. It is telling that the new and distressing behaviors came on around the same time as these other changes.