I’m scared....don’t know what to do

Smyles7720

Hello everyone,

I had a scary episode with Mom and don’t know what to do.

Mom started taking Seroquel (25mg) for over a week  to help her sleep throughout the night. Things were going great until Tuesday, February 15th. Around 4:30am Mom came in my room and said, it’s time to get dressed and go home. I told her I wanted to sleep a little longer because I did not feel well. She left and returned less than 5 minutes and repeated its time to go home. I repeated I was not well and she left. The third time Mom came in my bedroom and said it’s time to get up and go home . This time Mom started pulling the sheets of my bed and said she was not stupid the car is waiting downstairs and it’s time to get dressed. I was stunned and scared and did not move, Mom never acted like this before. She eventually left and went into the living room. I went into her bedroom and placed her favorite magazines on the bed and played one of her favorite vcr tapes(hoping to distract her) and returned to my bedroom. Eventually she returned to her bedroom and the distractions worked and she  eventually went to sleep.

Since this episode every night when I help Mom change into her nightgown she says where is her shoes or clothes it’s time to go home. I tell her we leave in the morning when it’s daylight or dad is picking her up in the morning. She gets very upset saying (her)Mom is looking for her. It takes a lot of fibs before I can get her in the bed to sleep.

Sorry for the long post, I  wanted to give as much details as possible because I am still scared and nervous with what happened Tuesday morning. What do I do?

(By the way, Mom does not have a uti-test came back negative)

Thanks for your help. 

HeartOnSleeve2210

This sounds like Sundowners. Often times a LO with Dementia or AD has bad episodes starting in the late afternoon through the night. It happens to my Grandfather. He gets very confused at night, wondering when we are going to go home or where his parents are. We haven't really gotten to a point where we need to use "fiblets", we can usually remind him that we are home, or his parents are gone and he goes: "oh that's right!" and that's the end of it. It's definitely going to be an adjustment, but I would suggest figuring out which "fiblet" works best to help her rest. Definitely bring it up with her GP too.

towhee

Hi Smyles- Have you talked to the doctor who prescribed the medication? Sometimes side effects don't show up right away. It could be as simple as constipation, but this medication can also sometimes cause agitation. Is it the wanting to go home that is new or the anger, or the mixing up of night and day? It won't hurt to check with the doctor, although it could just be progression of the disease. Hope things get better.

May flowers

Sorry you are going through this. If the med does not seem to be working, you may want to revisit with the dr. Some meds that work great for one person may not work for another. For example, we discovered that anti-anxiety Ativan made my FIL more anxious.

Anyway, always consider UTI. Whenever my FIL is out of sorts, we have them check. Our GP would prescribe an antibiotic anytime he had sudden odd behaviors, even if the urine test came back negative. It always worked. She believes he has sub clinical UTIs. 

​fesk

I agree with speaking to the doctor and discontinuing the Seroquel. Then give it some time for the medicine to get out of her system and see if the behavior subsides. If it is only a sleep issue you are dealing with, I would ask for a different medication and confirm whether an antipsychotic is needed at this stage.

ButterflyWings

Smyles- so sorry you had such a rude awakening! I know how that feels. 

With my DH, the worst of the late night early a.m. delusions was him actually going outside with a baseball bat, (partially clothed in something of mine), to do battle with the non-existent burglars and a car thief he imagined and also hallucinated seeing. This was a scary time for me. (He also started stockpiling hammers and heavy garden tools plus stashing steak knives under the mattress “to protect us” at night). Talk about sleeping with one eye open!  And once during a UTI, he was up super-early like your LO but I was the one he wanted to see leave. Didn’t know who I was, wanted to know how I got in, and insisted I’d better be gone before he woke up. Man! thankfully after some sleep he woke up with no mention of those multiple 3-5 a.m confrontations. 

The initial delusions and hallucinations led us to Seroquel and the low starting dose (25 mg) did nothing. That was tweaked upwards to 50mg  Then to spread it throughout the day, I guess to keep some in his system the doc had us increase it to 25mg three times a day and we started seeing relief. DH now takes 100mg morning, afternoon (before sundowning starts), and bedtime. If he misses one it shows in a matter of hours. 

Sounds like you handled it well. I’d agree with her, tell her you’ll take her after breakfast or another fiblet. And definitely make an urgent call to the Dr. 25 mg is pretty low dose and what worked for us was adjusting the amount and timing of the Seroquel.

Edit: is someone giving her the meds and watching her swallow them? Very important. (I learned that the hard way) Good luck!

King Boo

Have her seen by a Geriatric Psychiatrist MD who works with dementia patients.  This is their area, they have the most knowledge and expertise with this class of medications.

While neurologists and GP's can prescribe, it's not their wheelhouse, so to speak.  My LO was very underdosed as prescribed by them.   The Geriatric Psychiatrist knew the proper combos, dosage titers and meds to trial.

Smyles7720

Hello TowHee,

 The anger was new. 

Also, asking to go home is not new. Mom would ask during dinner time and I would say you go home tomorrow and that was the end of it. However,  what is new is :

(1)asking to go home at bedtime

(2) Asking for clothes to go home

(3) Getting upset she cannot go home and not letting the issue go with my fiblets.

Smyles7720

Thank you everyone for your advise. 

I am going to talk with her doctor and stop the Seroquel.