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

Has she been checked for a UTI?

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.

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.

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.

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.

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.

I hope and pray you're mom will improve.

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 :-(

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.

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.

List of possible side effects of Keppra (Mayo Clinic)

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

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,

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.

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.

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.

Check for a Urinary Tract Infection

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!!!

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 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.

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

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...

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”!

I just had a conversation with a dear friend about this very subject. His 80 year old brother underwent a sudden personality change along with severe dementia symptoms (paranoia, confusion, memory loss, etc.) After many visits to the hospital and doctors, neurologists, psychiatrists, etc. he was diagnosed with dementia related to Long Covid. He is expected to improve with time. If your loved one has had Covid recently, that might be worth looking into.

There are many things that can affect one's cognition, especially as they age. I would ensure she's not suffering from a UTI, also as folks mentioned, check her medications - any change can disrupt her vitals and that would lead also to change in cognition. My father has vascular dementia, and unlike for example Alzheimers, his cognition can come and go depending on how well his A-fib is under control. Essentially if his heart isn't working well, it affects blood/oxygen circulation to the brain which means his cognition is disrupted. If your mom suffered from seizures that too of course can affect cognition as the neurons are misfiring. It's a lot to handle so good luck... keeping seniors healthy can often be a difficult balancing act as their health wanes and you try and find how to get that precise stability with their meds.

I took Mum to hospital for what doctor thought could be stroke as she suddenly made no sense (words were dribble) and earlier she’d complained of headache and weak arm. Hours later at the hospital she was deemed to have a severe UTI and we went home with antibiotics. But in your case, I’m sure they would have checked for this as standard if she’s been at the hospital.

Having worked in healthcare over 30 years I have observed all of what has been mentioned regarding care and communication. Insist the best from your doctors and if they are condescending or rude get another doctor. Teaching associated hospitals are the best. Expect back what you give. A good doctor will be glad that you are educating yourself. Remember that if you go to a smaller town/city for care you will be getting care from good people BUT they don't have the numbers behind them. In a teaching facility they have it. You can ask your doctor anything and tell them anything. I wish you the best with your mom and it is obvious you love her very much. You may have to accept the "new" mom someday and if you continue to love and support her it will be good for both of you.
I am not bashing the medical system. We are lucky to have so many well educated doctors, nurses, office staff and building staff. My personal goal is to treat them all with kindness and respect and still be in charge of my care.

Wondering what her dose of Keppra is. In Dec of 2020 I fell down a flight of stairs in the middle of the night (I was responding to my husband who was calling me for help) and ended up in the hospital with 2 broken wrists. I needed surgery to have metal plates put in both wrists and our daughter (and her family) came to stay with her father. She noted that 2 days before my discharge he began acting “weird”, staring at the wall for minutes at a time, not responding to anything, just totally “out of it”. She called an ambulance, and he was admitted to the hospital. The doctors in the ER determined that he was having seizures and put him on 1,000 mg Keppra morning and night (2000mg total per day). He became a totally different person, lethargic, personality changes, memory loss, and worst of all he was no longer able to transfer himself from the bed to his wheelchair or the toilet. I was at my wits end and contacted his doctor to discuss the changes I noticed but he really believed he needed the Keppra and did not want to lower the dose. I finally took him to another neurologist (who specializes in movement d/o and dementia) who weaned him off the Keppra because, after looking at his medical records and EEG, she didn’t believe he had ever had a seizure. I’m not saying this is the same for your mom, but I would look at the Keppra dosage and if it seems high get a second opinion.  If she is having seizures, there are other medications you can try. I wish you luck in this journey, it isn’t for the faint of heart. (Just for comparison, my husband is 6 ft tall and weighs 185 lbs, our new neurologist said 2000mg was too much for him to metabolize).

Check for UTI

Hi Mike, I took care of my mother and she went through a time where she became like your describing your mother. I had to think what was different, what had changed since she was fine to make her become this woman I didn't know, and seemed out of touch. Luckily, I noticed the signs of loopiness and not making sense pretty early and was able to track it back to when the nurse had visited and put my mother on some new medications. No medications were taken off her already 14 pills a day regime, but a new one was added, it wasn't something that was serious and I wouldn't have questioned it if I hadn't started checking what each and every medication she was taking was for. I took the list of medications my mother was taking up to the pharmacist where I got her medications filled and asked him to look at what she was taking along with the new medication added. He took the list and found 3 medications that were not supposed to be administered to a diabetic, heart problem, and oxygen user, and the new medication that the nurse put her on was over 4,000 milligrams what my mother should have been given per day, it did not and should not have been given to my mother. My mom was in the hospital by the time I found the problem, my daughter who was a nurse was sure my mother was going to die and was trying to make sure they didn't put her on life support, she wanted a DNR, do not resuscitate, order put on my mother. I went to the hospital and pulled the nurse in charge of medications aside and told them not to give my mother the medication that was added to her others. At first they told me they had to follow the instructions of the doctors and administer whatever medications he put her on, but I told them the doctor hadn't added this med. it was a nurse, to please research all the meds and they would find that this medication was causing my mother's problems. They did and found it to be true, she was taken off of it, she came back to reality, and everyone who thought she was a goner, was surprised by how clear her thinking became and that she didn't get worse or die, but became her old self again. So, Mike, check the medications, I used the pharmacist because they are trained to check side effects, the use of medications against other medications to see if they are compatible, and they know what they are doing. I hope this helps you, and your mother, medications of all kinds are no joke, some of the fillers they use can cause problems that can injure someone's health badly. Good Luck and I wish you the best.

My mother is 101 years old, and went through a rapid deterioration of her cognitive skills. She is in assisted living and the nurses said her vital signs were normal. She went to two hospitals and they found nothing. Then I sent her to a third hospital. They found a rip-roaring bladder infection and hospitalized her for four days. She seemed much better mentally after treatment. Then she went to a rehab place to work on her walking skills because the Assisted Living wouldn't take her back unless she was self-sufficient in moving about her room. Then, while in rehab, she caught Covid and was put in isolation for 10 days. She returned to the Assisted Living, but was a very different person. She was in severe mental decline. She was then moved to the Memory Care (Locked) unit.
I found out later an undetected Urinary Tract infection can cause severe cognitive decline. I talked to a lawyer and he said the Urinary Tract infections can be very hard to find.