She is on to the next level

Just Bill

Well we had a few good days. I have learned to appreciate good days with reserve. It's never a good day trend. They seem to be calms before the next storm. My wife is 100% psychotic now. Extremely angry her reality is in another place and another time. It seems like hell. She can have a few moments of calm and right back to psychotic. She has an appointment with her neurologist 9/15. We have been playing whack-a-mole with her meds to counteract her symptoms. They work for a little bit and her symptoms come back bigger, stronger, faster, and smarter than before. I am trying to find a psychiatrist that specializes in dementia, that is near my house, that takes insurance, that is excepting new patients. A lot of "thats" in the search filter, I am ready to forget the insurance and pay out of pocket. Apparently the insurance companies don't like psychiatry. Anyway before my head exploded I thought I would vent here. I feel better already.

Hoot619

Bill, Keep on venting it keeps us sane. A lot of thoughts go through my head when dear wife is out of it.  And some aren't nice but letting others know what I am going through sure helps me get relief.  we can't keep it bottled up inside, maybe they don't want to hear it. Tough, I have to get it out ! Hoot

Just Bill

Thanks Hoot. Other than this group I don't have anyone to vent with.

ImMaggieMae

Bill, I’m sorry to hear that your wife is going through this. Are any of the meds she’s taking antipsychotic drugs?

Just Bill

Yes IMM she is on day 11 of seroquel. It worked for a little bit. She actually questioned her hallucinations for a few days, but we are back to fully hallucinational without question. She is angered by her constant confusion any attempt at calming her is met with intense anger. She is also very paranoid. She grew up in foster homes and had a bad experience, she seems to be reliving that experience and of course I am the foster parent. This is the most insane thing I have ever experienced.

ImMaggieMae

Bill, can you reach the doctor who prescribed the Seroquel by phone or web portal? 9/15 is an awfully long time to wait. And if he’s already seen her, maybe he could just send over an increase or another prescription. My husband took Seroquel for a month or so and it worked for a short time, but then stopped working, even with an increased dosage. They switched him to Risperidone which worked within a couple days. It’s been like a miracle drug for him. There are also other antipsychotic drugs as well and they all seem to work differently on different people. My husband’s prescription was changed through an ER visit. It was while we were still waiting for an initial appointment with a neurologist. But I avoid ER if possible.

Joe C.

Bill, Maybe you could ask the Dr. if you could tweet the seroquil dosage. When DW started on seroquil her Dr. gave me some latitude to increase the dosage as needed. It was about 6 weeks before I got the dosage and timing just right for her delusions.

Just Bill

Truth be told the neurologist let me bully him into prescribing her anti depressant, ambien, and seroquel over the phone. So I can't really blame him or hold him responsible for her behavior. My gut is telling me to get a psychiatrist that specializes in dementia involved to review her meds after diagnosing her symptoms. I get the feeling her neurologist would rather not prescribe anything, but I did research and insisted. I feel responsible for getting involved so forcefully in her prescriptions. I am worried I may have made her situation worse with meds. This is the problem with machinists we think we know everything. I fell like I don't know anything right now. I would love a doctor to tell me to shut up and just take charge and fix her.

ImMaggieMae

Bill, I don’t think you should blame yourself. I think doctors and neurologists also play whack a mole with medications for Alz/dementia. They probably start with what works for most people and then go from there. When my husband needed an increase in the Risperidone after 7 months, the ER psychiatrist told me he was doubling the prescription dosage, but to go up only as needed. He suggested an am and pm dose and then told me that since I’m with him 24/7, I can assess his needs better than someone who only sees him for a short time. He gave me a few perameters for how much to increase or decrease at a time and answered a gazillion questions I had about the drug. When we finally had the first appointment with his neurologist several weeks later, he agreed. His office is also the one who upped the memantine that he had been taking for at least a year and a half with no results that I could recognize, but made a very big positive impact. 

I always put a note on their web portal when I change something, not because they asked me to, but so they know where he is with the meds and what’s working.

 I think you absolutely should be involved in what prescriptions your wife is taking

Just Bill

I am not thinking very clearly, I have wasted 2 days looking for a psychiatrist when all I had to do was call her primary physician and get a referral. Duh.

toolbeltexpert

Bill doctors don't second guess, if one thing doesn't work they just keep trying. Your doing what needs to be done for your dw and you.I am personally impressed with your caregiving. Tweeking dosage and timing can make a difference and so can a new med. So maybe your off a couple thousandths,  you got plenty  of material to work with. I had to throw in a machinist thing in there.

Just Bill

Thanks TBE. Measuring 3 times and cutting once isn't the norm here. It's more like like make 1000 random parts and we will sort out the 10 accidental good ones we need.

toolbeltexpert

Bill I know what you mean. It's like cutting a thread on "a" and accidentally pulling the lever on "c" sure makes a mess, been there done that.

abc123

Hi Bill, I agree with finding a good psychiatrist who specializes in dementia. I wish you the best. Vent as much as you need to. This forum has kept me sane. The knowledge and emotional support I have gotten here has been a life saver. Good luck!

easy23

Speaking from recent experience - don't forget to check for a UTI!

terei

I think you would have better luck with her being treated in clinical setting for 2-3 weeks.  A geri psych facility will have a physician that is well versed in this area + it would also give you some relief.

I would try to have her admitted through an ER while she is having an episode

Just Bill

Well day 3 of tracking down a geriatric psychiatrist I finally found one that meets all the requirements. I felt like a lab rat testing mazes. After 100 dead ends cheese!

DJnAZ

I wanted to echo easy23's comment about testing for a UTI. My wife had similar episodes and a UTI was the common element almost every time.

Just Bill

She has had UTI's before and knows the symptoms. She takes something called AZO something. It makes her urine orange. I don't think it's that. I am wondering if her psychotic episodes aren't caused by siezures. She has had epilepsy for about 10 years and takes lamotrigine to keep it in check. Her episodes are jekyll/hyde. Literally like a light switch. She is either delusional and happy or delusional and very angry. When she snaps out of a delusional and angry episode and switches to delusional and happy she has zero memory of being angry. When she used to get siezures before being diagnosed she would have zero memory of those either. I have a good vibe with the psychiatrist he works out of a place called healthy brain center. I texted him and he texted me back ! The last 3 I called never called back. I filled out all the forms and hopefully real soon get an appointment. When she goes to her neurologist I am going to tell him my siezure theory so he can schedule an eeg. There I go telling him what to do again. Maybe the psychiatrist will take charge so I don't have to.

ImMaggieMae

Bill, you are her best advocate because you are home with her and know her symptoms. I hope it doesn’t take too long to get into the psychiatrist that you chose. Around here everything has been really backed up because of Covid I guess. Once we have an appointment, I keep calling in almost daily to see if they have any cancellations that we could take. It’s worked a couple times. 

An EEG sounds like a reasonable idea since she’s had seizures in the past. It might make a difference for the types of medications. It sounds to me like you are doing a wonderful job.

 In my experience AZO works for mild UTI’s but once they take hold she would probably need an antibiotic. They also sell some test strips. I bought some but haven’t needed to use them yet so can’t vouch for how effective they might be. I bought them on Amazon.

Good luck and please update us on results.

Just Bill

As a new patient I had to fill out basic information, but what I really like is the very detailed questionnaire. In my business I used to do highly detailed inspection reports on complicated parts and equipment. So he has a very detailed inspection report on my wife. The session is on Zoom but my inspection report has everything he needs to know to make a diagnosis. Plus he has access to all her neurologists data. What I like is dementia is a specialty of theirs. It's a family run outfit, looks like Dad owns it and son and daughter work there. There is a part of their website that has a lot of peripheral businesses related to dementia i.e. attorneys, etc.. They do sessions on Tuesdays and Thursdays hopefully we do this next week. It took me 3 days of admin duty to find this doctor. I got it from my wife's insurance company after lots of hours and lots of being on hold and lots of let me transfer you and lots of on hold elevator music. Psychiatrists are on lists that are hidden under layer upon layer of phone looping centers. It isn't on their providers list. I have heard from doctors psychiatrist don't like dementia and insurance companies don't like psychiatrists.  Anyway that hurdle is overcome on with the adventure.

Joydean

Bill so glad you found what sounds like a good psychiatrist. Sure hope you get to see him/her soon and get help for your wife! Take care of yourself! 

MaryG123

That’s good news Bill.  We see my husband’s psychiatrist via Zoom, and it works out very well.  She is the most accessible of our docs.  I’m sure you’ve thought of this, but be sure they have your healthcare surrogate/poa/HIPAA waiver ahead of time so you can participate.