I am not sure my wife is coming back this time

Just Bill

My wife had the longest psychotic episode ever, it is still ongoing. It started at 3 in the morning Sunday. She is a text book Jekyll/Hyde behavior. Sweet and loving one minute spitting venom the next. That is what I have been referring to as psychotic episodes is the Hyde part of her behavior. There is no talking or reasoning in this state, any attempt at communication is like throwing gas on a fire. I have to wait until she snaps out of it to return to Dr. Jekyll who's sweet and loving and fairly lucid to communicate with. For the last 5 months the episodes were once or twice a week lasting an hour or two. I don't know if she is coming back to light this time. I teach a zoom class from 6 to 8 Mon-Thur. Its a great way to work from home so she isn't alone in the house. She is hallucinating and during her Hyde phase is 100% delusional. She used to work at Target as a cashier. During my class she hallucinated the living room was full of customers and there were backing up at the register. She came back to my office screaming about needing help out here. I tried telling her to wait and that was it, full ballistic Hyde mode. I apologized to the class and let them go early. The soonest her neurologist can see her is next week. I'll cancel the week and get in the cage with the tiger until she can see her doctor. This is the farthest she has gone in the progression of this disease. She is so out there mentally I am numb. At every disease progression milestone a little more of her is gone. I'll sit with the dog on my lap and let her verbally abuse me until she gets tired. Just another day at the races ! Thank you all for letting me vent, it is very therapeutic.

ImMaggieMae

I’m so sorry to hear you’re having to go through all that, Bill. Has her doctor ever tried an antipsychotic like Risperidone or Seroquel? A lot of people have good results with those medications. And they work quickly.

toolbeltexpert

Bill I so sorry, that has to be heartbreaking and very trying, I am praying you can get some relief.

Faith,Hope,Love

Oh, Bill.  I'm praying for you that she'll snap out of it soon and you can hang in there until her appointment.  At this point, a week can seem like an eternity.  The neurologist has my DH on Seroquel and it's helped immensely with hallucinations.  Maybe it would help her.

Joydean

Bill, I agree, a week can seem like forever! Prayers for you and your wife. You can do this! What kind of classes do you teach on zoom?

Ed1937

Bill, I know that is hard. I can't even imagine what it is really like. This may be a very small thing, but just know we're here for you. Even though we can't understand just how terrible it is, we do "get it".

Just Bill

Thank you all for the kind words and support. I'm hoping her doctor has a cancellation otherwise I will be riding this whiteknuckler until Sept 15th. Her meds are: lamotrigine and effexor in the morning and ambien and aricept at night. I probably waited too long to have her meds adjusted. She has been hallucinating a lot and it wasn't a problem until it was. The last time she was having delusional psychotic episodes the Dr. prescribed effexor (anti-depressant). It worked for a while but the progression back to psychosis was pretty fast. She is lucid now but that can pivot the other way in a heartbeat. So I will breathe, meditate, and exercise to keep my sanity one moment at a time until relief comes in the way of a doctor visit and med adjustment. I wonder what he would say if I asked for a tranquilizer dart ? Just kidding, I tend to make jokes in stressful situations. I am that guy.

Just Bill

Hello Joydean I teach manufacturing software classes. Zoom is great for teaching software they don't need to see me they just need to see my screen and follow along on theirs.

David J

Bill,

My wife has regular appointments with her neurologist, but med management is done by her psychiatrist. He is much more available for consults than the neuro, and will get back to me within a day if I leave a message. For whatever reason, neurologist appointments are always weeks away, and psychiatrists are much more available. In my experience the med management  is much mote important as the disease progresses, and prompt attention to behavior changes is necessary, for the patient’s comfort and the caregiver’s peace of mind. 

Just Bill

Thank you David J. Having her see a psychiatrist hadn't even crossed my mind. I thought this disease fell under the neurology umbrella. Has there ever been any conflict in having 2 different doctors prescribing medication ?

jfkoc

It is not at all uncommon for the neuro to defer meds to a psychiatrist. They are the drug specialists.

Has Lewy Body Dementia been considered? Any possibility of an UTI?

It is therapeutic to let it all out and here is a great place to let it rip. Stay close and please update as you can.

Just Bill

Her diagnosis is early onset dementia. Her MRI says cortical and central atrophy. That is all I know. When I see the doctor I am going to ask if what she has is an identifiable dementia. She also was diagnosed with epilepsy about 10 years ago that is what the lamotrigine keeps in check. She has all the symptoms of LBD but I don't know.

Chammer

@JustBill:  others have tried THC for extreme behavior.   Is that something that is available where you are at and/or something you would consider trying until you are able to get your wife to her appt?  We are in Texas which is medical THC state only but the hemp equivalent- Delta 8 is available at all the CBD shops.  My undiagnosed DH who has always been very proud of "never doing drugs or smoking pot" is willing and uses Delta 8 gummies when he needs to sleep.  A shop could help you find the best alternative for your wife.

jmlarue

If it were me, I'd take her to the emergency room to have her clinically checked out for UTI. They will likely do blood tests and a CT scan, too. The Neurologist would likely want that testing anyway, doing it at the ER will avoid any delay. The ER doctor may be able to consult with the Neurologist by phone. It is possible that they may suggest she be admitted for psychiatric evaluation for a few days. This would certainly be better than trying to cope with the Jekyll/Hyde craziness on your own. One always needs to be on guard about the behavior becoming dangerous to you or to her when vivid hallucinations are involved. The ER visit is the best way to step to the front of the line with a Neurologist visit. You really can't wait weeks to get her (and you) some help,

P.S. The ER should also have access to an on-call Psychiatrist for consult. It may help you to connect with a local psychiatrist to take her on as a patient for future prescription management.

ImMaggieMae

I hate ER’s with a passion, but I agree with jmlarue. While we were waiting for 8 months for a neurologist appointment, and my DH was bouncing off the walls with repetitive behaviors and awake for over 36 hours, it was a psychiatrist at the ER who put him on Risperidone which calmed him within a couple of days. He ended up being admitted after the ER initially gave him so many drugs, his heart rate (which is normally excellent) reached dangerously high levels and had to be brought down with yet another IV drug. It was a nightmare for a couple days, but by the 3rd day had completely reversed with the Risperidone. He was calm, but alert and walked around the halls with me and sat and talked.

Dio

So sorry for you, Bill. My DH goes through Jekyll/Hyde as well but less explosive; I dread the day he becomes volatile. I suppose we are fortunate that our psychiatrist and neurologist are both quite accessible and responsive. However, in your situation, as others have recommended, the ER might be a good place to see if anything organic is the culprit. Please do let the ER doctors know of her meds and current diagnosis. When my husband was in the ER, the psychiatrist on duty failed to contact me for this info and prescribed a drug that could have had deadly effects for my DH's condition. Wishing you well and please know that this, too, shall pass.

David J

Bill, Others answered this already, but psychiatrists generally know meds for the depression and psychosis that often presents with dementia. In our case, my wife was already dealing with these issues before her dementia diagnosis. 

Dave

JJAz

Bill,  If she is actually hallucinating (seeing people/animals that aren't there) and not just having delusions, please consider that this is a symptom of Lewy Body Dementia.  It is a very complex disease and Ambien is contradicted.  Please discuss with your physician.

BillieFL

What a shocker! I have done a lot of reading about dementias etc. and NEVER saw anything like what you are talking about.

My DH has the same condition... Jekyll and Hyde... lasting a few hours... and I thank you all for what you have contributed. You have helped me so much. Thank you for these insights.

Just Bill

Thank you all for your prayers they worked. She snapped out of it yesterday morning and was her sweet self all day. She even talked me out of cancelling my classes this week promising not to interrupt again. I taught a class and she came into my office quite a few times just to check on me but didn't interrupt. There were no cancellations so her appointment is still Sept. 15. The doctor is going to call me today so I can update him on her condition. I think the source of her triggers where for two reasons: 1) Her hallucinations went from her knowing they were hallucinations to not knowing they were hallucinations and 2) My reaction to the change, I went into hyper caregiver mode and probably just came at her too fast trying to assess what is going on in her head. Yesterday I switched caregiver mode off and loving husband mode on and the results were almost immediate. Note to self: TLC is a tool in my tool box I need to use more. We still have to deal with the hallucinations, but the anger element is gone for now. When I see her talking to someone that isn't there I don't have to ask her who she is talking too if it puts her on the defensive. Thank you all again, you are proof prayer works !

Dio

Bill--great to hear! My DH also gave me a bit of reprieve last night. He slept peacefully for 9 hours without disturbing me or any scary outbursts. Oh! How I cherish these moments of calm. Yo-yo, roller coaster, giant seesaw ... it's a mad mad ride we're on.

amicrazytoo

I don't know hat else to add, other than I'm sorry.