81-year-old Mom's personality erased in two weeks. Any idea why?

If you notice personality changes of someone in your care, I would double check their Medications for correct Rx Product strength, and dosage.
Over several weeks in hosp, my Mom’s personality changed drastically. I asked for a copy of her Rx list which was to follow her from her Assisted Living. I wanted to see if I could figure out if there was an error with her medications. I looked over her Rx list and all Rx products seemed correct. I couldn’t figure out why her sweet personality had completely changed (and it didn't seem like a simple mood change). After her discharge from Hosp I looked over that Rx list more closely. Someone had “dropped” the correct strength of a particular Rx. when Mom was admitted into the Hosp. She had been given 1/2 the strength of Rx for 3mos. When I realized the Rx problem & pointed it out, it then took several days to get the error corrected by all involved with her medical care, ie…Doctor, Pharmacy and ALF head Nurse/staff ( for correct strength Rx to be given to Mom). Once her Rx was corrected, we slowly saw Mom “come back” from the completely different person she had turned into when she had been given the incorrect strength Rx. It is so nice to have her back to “her real self”!

Forgot to mention...a shot of cranberry juice each morning will help prevent UTI's along with make sure Mom drinks plenty of water as a lot of elderly get
dehydration. You can tell by pulling up their skin on their hand.

I keep Pedialyte and Gatorade in at all times along with chicken soup broth.
The Pedialyte has a shelf-life as soon as you open it, must refrigerate.
The Gatorade you can buy sugarless.

Always keep these things in the house. I also just bought a blender ($24.99) not an expensive one for days when Mom is not that hungry since we are having a heatwave. You do NOT have to buy these $300 blenders that the millennials are buying. I'm in my 50's I'm happy with the one from Betty Crocker I bought online and will keep maintained.

Enough said...

Good Morning Mike,

My mother--same story. Diagnosed with Lewy Body Dementia. Statue-like behavior, came up in the midst of the Pandemic. Her executive functioning skills were basically, like a robot. Started out with a "one-time" major hallucinations. Who is this person that changed overnight?

(3) hospitalizations later, short-term rehab stint, (3) rounds VNA care, along with the "right" medication Mom can now walk the supermarket with an UPWalker Lite. Gray walker used at night for bathroom.

Mom is sleeping now, again. The sleeping is part of it. Her symptoms fluctuate. At first, we didn't know what to make of it, a totally different person.
My siblings and I were beside ourselves. We prayed, cried and were in a state of constant worry.

Agree about the over-prescribing but remember which meds to stay away from should your mother have LBD.

The chronic UTI's which were never an issue have subsided along with adding a toilet with railings NOT the booster seat as you can't wipe as easily.

Shower chair with shower nozzle and railings can be installed in the bathroom. Get a scrip from your Mom's PCP and get on the portal and build a relationship with the PCP. All the medical equipment can be covered by insurance.

The Geriatrician neuro-psy docs check out their credentials online. Check out ALL of your mother's docs on your local State Medical Board. If you don't like what you see, drop them and transfer all records. Some Psychiatrists were nuttier than the people with problems--again check them out.

Teepa Snow has great YouTube videos on all types of dementia. My mother's peripheral vision was the first thing to go. The first thing I noticed. She would walk behind a car that was backing out in a supermarket parking lot. Teepa Snow said it's like wearing scuba diving goggles and you can't see on either side, just straight.

Don't let the docs torture your mother. If you have a "home" blood draw don't have them come and draw blood, Tu, Wed, & Thurs. Find out what is necessary and do "one" blood draw. Ask for what you need and be thorough.

My mother switched from Warfarin to Eliquis (more $$$) but less invasive.

The nightmare we lived 2 Summers' ago today Mom is a different person but you are going up against old age. Mom also has a-fib and non-hodgkins lymphoma. Once their 80 there are "multiple" health problems.

Good book: My Name is Kevin not Lewy--written by a man from Ireland who has LBD. Check out online videos "Lewy Body Ireland"

Someone with LBD needs structure, routine, early-to-bed, limited tv, nutritious meals, lifeline button, call internet provider and put an app on your phone and a camera at the door should Mom leave dwelling.

White cotton underwear, NO throw rugs on the floor, NO step in slippers. Hospital bed can be covered by insurance along with 1/2 a railing so Mom won't fall out or feel too caged in.

Easy slip on pants with elastic waists and deep pockets. I buy on sale on Lands End and L.L. Bean. Have everything delivered. Buy the same pants in multiple colors.

Make friends with the Church ladies who are fabulous in showing up every Sunday with Communion and a Bulletin.

Get yourself (2) calendars to log in Morning Pills & Evenings Pills, pill box and pill cutter. Wash the sheets every Monday and keep up with the laundry.

Tell PCP to bring on the troops--VNA, p/t, o/t, speech, CNA, cleaning lady, home blood draw.

My mother walked 2 miles everyday up until 48 hours prior to this "perfect storm". There were subtle signs all along but full-blown I believe due to the Pandemic where her structured active lifestyle--very social lady came to a halt.

When you go to the docs be prepared, bring a list of prescriptions and put one on your refrigerator in case you have to go out in the middle of night in the rescue. Also type on the list the PCP, pharmacy, emergency contact and if Mom wears hearing aids or on blood thinner.

My prayers are with you...I hope I have helped! Ireland

My mom was diagnosed with Alzheimer's when she was 89, and passed away at 94. This was 10 years ago. Since then, I think she might have had mixed dementia: Alzheimer's and dementia with Lewy Bodies, primarily because of her auditory and visual hallucinations. (I never even heard of mixed dementia and Lewy Body Dementia until fairly recently.) I agree with the others who have posted here, about checking for a UTI, perhaps that's a contributing factor, as well as sensitivity to the medicine. My mom was very sensitive to medicine, (me too), so what's a "normal" dose for 1 person might be too much for another. Sometimes it's an educated guessing game. Kailos labs and Oneome have cheek swab tests done via the mail, that sometimes indicate sensitivity to certain meds. I'm not a doctor, so I'm just passing the information along.

Did your mom get the Covid shot? Lots of info on how it affects the brain and creates prions.
My husband with early onset Alzheimer’s, was holding his own until a family member got him the shot unbeknownst to me his POA.
He had radical behavior changes and I couldn’t attribute it to anything but the EOAD. I learned a month later about him getting the shot I never wanted him to have. He changed so much and required care I couldn’t provide. He died 7 months after that damn shot. He was 67.

My mom had some horrible digestive issues which were resolved. This was Dec 2022. From that point on my mom has had a rapid decline in cognitive ability.
we did the same tests as you did and went to neurologist, etc…
we are adjusting to the fact that this May very well be rapid onset dementia. It’s extremely hard.
we had to move her assist living, which was very difficult.
I don’t mean to be depressing. Honestly I’m just relating my experience.
I pray for your strength, patience and love. We CAN do this!!!

Check for a Urinary Tract Infection

Might be very basic but has she been checked for a UTI? My mom just had a similar episode and it was caused by a UTI and kidney failure.

I don't think the anti-seizure meds will be efficacious until at least a month or two after starting them. But speaking from lived experience, they will "wipe the personality." It takes time to balance out after starting them.

The spinal tap will test for meningitis or other acute infection, and I wouldn't trust the usual measures -- like high temperature -- to be indicative here. She's elderly, and it could no longer be a presenting symptom. Rule out acute infection and anything else as best you can. Check with an immunologist because autoimmune conditions are common enough in women and contribute to neurological symptoms.

Then consider reducing anti-seizure meds with doc's approval. But push for that if you think the new meds are part of the issue. It's my opinion that docs commonly overprescribe dosage.

You might end up coming to terms with rapid onset Alz/dementia as the most likely scenario. I can see you're considering this from your other comments. You're doing all the right things to get your mom care. Well done.

The best place to check the common, rare, and extremely rare side effects of any given medication is on the Patient Information Leaflet which is always enclosed in its packaging.

This leaflet will also advise what to do should you experience any of the side effects, which will range from expect them to wear off quickly to stop taking the medication and seek immediate medical advice.

It's written by the manufacturers (under the watchful eye of regulators), and they should know.

PS If you've lost the PIL, or thrown it away in irritation, you can always find it online - go to the manufacturer's website, find the search function, and type in *exactly* what it says on your medication's label.

Dr Google says: Keppra may cause serious side effects including:

unusual changes in mood or behavior,
confusion,
hallucinations,
loss of balance or coordination,
extreme drowsiness,
feeling very weak or tired,
difficulty walking or moving.

And look up Hyponatremia, related to low sodium with effects for elderly people that are not just about drinking too much water.
skin rash, no matter how mild,

List of possible side effects of Keppra (Mayo Clinic)

https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/side-effects/drg-20068010

Here's an article from NIH:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2706263/

AND a more recent one from Mayo:
https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013

Is the hospital that is/was in a Teaching Hospital, i.e., one connected to a medical school?

Given your proximity to NYC, getting her worked up at NYU or Columbia/Weill-Cornell seems prudent.

Burke is a rehab center with outpatient clinics. They do acute rehab only, not subacute.

In your shoes, I would want to make sure that they've ruled out reaction to the new med, infections of all sorts and electrolye imbalances. And make sure they listen to what you're telling them about her previous functioning.

Mike,
Thanks for the update.

Dementia is baffling.

It is scary.

Devastating.

Grief upon grief upon grief.

Our loved ones - productive members of society, artists, authors, engineers, professionals, reduced to childlike, emotionally paralyzed shells of themselves.

Shattering.

And, I’m so very sorry this is happening to your beloved Mom, and to your family.

Although we still do not have any diagnosis or follow-up from our doctor, I was able to view the labs directly. It looks like some of the findings from the spinal tap (lumbar puncture) may be consistent with Alzheimers :-(

I hope and pray you're mom will improve.

I don't what has caused these symptoms - but I know family know their loved one best.

Keep advocating for her care, keep asking questions & keep telling her medical team this is NOT her usual self.

I hope an answer can be found for you all.

How is her sodium level? Something similar happened to my 92 yo mom when her sodium dropped to a critical level. It's been a little over two months and she has regained most of her normal personality.

UTI was negative. I should have mentioned that. But I don't believe she was thoroughly tested for other types of infections. I don't yet have access to view her labs directly. I feel like her case has lacked appropriate attention.

Re: Keppra - I will read up on it. She's on it for I think six days. I believe the sharp decline appeared to start prior to the Keppra, though I have to reflect on that more. She actually had one very lucid day after the Keppra, where it felt like mom was back - then rapid decline from there.

Read the patient information leaflet for Keppra and report the symptoms.

Your mother has only been taking this drug for eight days. It may be that the dose needs adjusting, or it may be that her body needs to adjust to the medication. Don't stop it, but do report it - and make someone pay attention.

We aren't doctors here, so I'd say go with what they say.

However, I will say that my mom literally lost her emotions overnight when she developed pleural effusion which I believe led to her vascular dementia. She went from a funny, somewhat snarky person who cried at movies to someone who didn't really react to anything. She wasn't as bad as your mom, but when my mother didn't shed a tear when my dad died I knew she was gone.

Has she been checked for a UTI?