Help - constant babbling

Birdies

Quick history:

My mom was diagnosed in 2018.  Symptomatic in 2015.

Note of interest:  my parents went on a 3 week cruise at the end of 2014, and when they returned, my mom said she never felt “right” again.  TIAs suspected while on cruise.

Diagnosis was never completely clear with 2 neurologists.

Pet Scan/CT/MRI findings: Alzheimer’s dementia and/or Parkinsonian dementia with Vascular Dementia as well.  (No evidence of FT or Lewys)

My mother does not display typical Alzheimer’s traits.  She is still mobile but has no ADLs and  she can still feed herself.  She is still cognitive to an extent.  She mostly understands what you’re asking her, and can answer back sometimes. .  BUT she “babbles” (word salad) every waking moment, - it never stops.  This constant babble started in December and has progressed rapidly.  She was put on Seroquel in October, with no other meds.  Since the end of January my mom has been on full hospice at home.  The babble accelerated considerably a week ago, - which prompted a telehealth visit with her Neurologist.  The Seroquel (75mg) works perfectly to put her to sleep at night, but the daytime dosing either makes her sleep or keeps her awake and in the “babble” state.  We played with the dosing - no luck.  So the Neurologist prescribed 2 depekote (sprinkles) for day and keep the 75mg Seroquel for night.  Xanax as needed.  

She has had no quieting effect with either the depekote or Xanax.

I suspect a possible UTI, but she has no fever and is not complaining about any pain.  I’m hoping to get a sample (near impossible).

I also suspect she could be having this amped up babble “mania” as a side effect from the Seroquel?

Has anyone experienced this NON-STOP BABBLE?

Or a UTI with NO “TYPICAL”  symptoms, except this over-excessive babble?

Or the manic babble as a side-effect from Seroquel?

Jane Smith

Hi Birdies. Sorry about what is going on. 

I cannot speak to the Seroquel, but of course anyone can have any number of reactions or possible side effects from medications. And there is medication interaction to consider, as well as dose and timing.  I would definitely talk to the doctors about it.  Who is prescribing her dementia meds?

I have had a lot of experience with UTIs and other infections.

First, absolutely anyone can have a UTI with none of the symptoms we are familiar with (fever, pain or burning on urination, changed pattern of urination, et cetera).  This is more common is older patients and especially more common in older dementia patients. Women get UTIs more often than men.  So yes, that is a Thing. 

Secondly, any infection can cause a sudden change in behavior in dementia patients. Trust your gut and get it checked out.  Sometimes the behavior changes start out small and ramp up rapidly unless the infection is treated. 

When dealing with a UTI you always always want to get not just the urine test (UA or urinalysis), but also a urine culture, to make sure the right drugs are used.  Also know that UTIs can be hard to clear, and can easily hang on or recur.

The only early symptom my mother gets with a UTI is a very subtle change in her behavior, honestly not much more than she just doesn’t look right to me, plus a certain look on her face, plus a small shift in her normal patterns. I have never been wrong when I suspected an infection, once I knew what to look for. That’s why you should trust your gut.

Sorry for the invasive questions, but maybe some info will help us to help you get a sample. If she can still urinate in the toilet or commode, get an item called a “urine hat” which you can buy over the counter at a pharmacy, medical supply place or probably even on Amazon.  Your doctor might even give you one. They are cheap, usually two or three dollars, so don’t get ripped off.

If she is using Depends or similar, I think there may be a way to get a sample from one that contains urine (but not feces as that would contaminate the sample) but here I am out of my depth, and hope one of the other members will comment. 

If you have assistance from home health or hospice or adult day care or similar, they likely can help you. 

I hope that helps a bit. I’m so sorry and know this must be difficult for you all.

Marta

I will play the devil’s advocate and ask:  for whom is the babbling a problem?  Does your mom seem upset by it?

M1

Birdies there are some other current posts about primary progressive aphasia, you might want to look at those.  Can be a prominent symptom in some folks, sounds like part of what you've got going on.  Strokes in the speech areas can also do this.  I'm sure it's both irritating and frustrating....

Birdies

Hi Jane,

Thanks so much for your generous and thoughtful response.

The neurologist prescribes the dementia meds.

We do have the “urine hat” and are currently bringing her to the toilet every hour.  We (either myself, my dad or our caretaker) sit with my mom and try to cajole her into peeing.  No luck yet.

Our hospice nurse visits tomorrow, at which point we will decide if we are going to treat suspected UTI empirically.  My mom has never had a UTI in her entire life and has rarely taken antibiotics.  I do not want to use a catheter at this point, - as there is the potential for infection.

I used 2 sticks, one in her briefs and one in some urine trickle caught in the hat.  Both are positive.

And so it goes... thanks again Jane

Birdies

Hi Marta,

I think playing the devil’s advocate is always important...  especially for those of us who have our LO’s at home.  

Our goal always, is to keep my mom safe, comfortable, well nourished, calm and happy.  No easy feat with a disease that presents so many challenges with its progression and very little support or helpful knowledge from the medical community and with our government.   And that is why this board is so important, - as it provides so many of us a place to come when we need help or ideas that are not readily available elsewhere.  As the saying goes “caregivers usually know best”.

All that being said, and in answer to your querie:

 I will play the devil’s advocate and ask:  for whom is the babbling a problem?  Does your mom seem upset by it?

In no way is the excessive and manic babbling comfortable for my mom.  She expels all the air from her lungs doing this and starts the “loop” again with another breath.  She is exhausted and her vocal cords raspy.  

The babbling is a very real problem for my mom (not us) and we are doing our best to try and find a way to break this unusual cycle.

Birdies

Hi M1,

I have read about PPA and it had peaked my curiosity in the past.  Neither neurologist brought it up, - but we all know that with many of our LO’s, their diseases are not straight forward and are often a combination of many brain ailments.... sigh.... making most treatments a guessing game.

But I will ask her Neurologist on next consult.

Thanks for thinking about our current circumstance.  

Marta

Hi Birdies. I am sorry to say that the babbling may continue until her inevitable decline. You have tried to medicate the issue but learned that the flip side is sedation to the point of oblivion. 

My husband’s obsession was pacing 24/7, which he did not seem distressed by. We tried to address it with medication, because he was losing weight to a dangerous level. Alas, he continued pacing until physical decline made it impossible. 

It may seem like forever, but the babbling will pass. 

I see you have the UTI issue well in hand. 

The Seroquel side effect question:  only way to know is to wean her off. 

Wishing you well. 

Birdies

Update

My mom did have a UTI.  And as I had said, she had no fever -  but the new manic babbling behavioral change made me investigate what could be going on.  

So we are through all the antibiotics and are still seeing the babbling mania.  Her change was shocking enough to our hospice social worker, who had seen her one month ago, to have our hospice nurse organize a hospice Dr visit next week.  Our social worker has many years of psych/dementia experience and he really believes we will find the right combination of meds to help.  My poor mom is exhausted.

Marta,

We are aware that this indeed could be the next phase, but hope not.  Her neurologist and hospice nurse have not really seen this exact behavior....  but everyone is different.  

Thank you for your thoughts, suggestions and well wishes.  Much appreciated