Delusions and Paranoia

Phylburt62

New to this forum, but on the struggle bus. My husband and I had COVID in October. Since then he has declined greatly. In the past several weeks he has begun to display paranoid and delusional behavior to the point law enforcement had to be called Monday. He was hospitalized overnight. My options at discharge were home with me, with 2 pills of Seroquel for the next 2 nights, or being admitted to a psych hospital for stabilization in another state. I am using FMLA to care for him, but it is unpaid because I used my PTO with COVID.  For the past 48 hours I have been functioning on nearly zero sleep due to his delusions and paranoia. I am at wits end to know what next steps should be. Outside of his current behaviors he could remain home. He gets assessed for an adult day care center in another week, and I'm checking into home health help. Any guidance would be much appreciated. Thank you in advance.

VandyTor08

I've been at the delusions and paranoia for about five weeks now.  You can read what I finally did in what I just posted.  I'm not sure it was right yet, but you can only go so long without sleep and Seroquel did not solve the issues for us. 

This is all just so difficult - all I can say right now ...

Phylburt62

Thank you. How do I see a previous post?

Phylburt62

VandyTor, I found your post. I am so, so sorry for your loss. While we are at different stages from each other, there are similarities in our journey. Please know you have helped me feel less alone, and more normal in a highly abnormal situation, through your post. I will be forever grateful to you for taking the time to reply to my first post.

Cynbar

You can't continue on like this, it's impossible for you and it's not good for him either, he must be very upset and unhappy inside. Home health care and day care will not accept him in this current state. If the Seroquel doesn't work, send him back to the hospital and agree to the geripsych admit. I'm not sure why it is in another state, but it may have to be done, no matter where it is. Good luck, we are all here for you.

Ed1937

Phylburt, welcome to the forum. Sorry you have a reason to be here. I fully agree with Cynbar. This is not something you can continue with. The psych hospital should be able to get him straightened out. Did you ask why it had to be in another state? I there is a good reason for it, you might have to accept that.

VandyTor08

Thank you, Phylburt - I'm glad the post helped you in some way.  I agree also with Cynbar and Ed, you cannot continue like this.  Let us know how things go.

ButterflyWings

Hi Phylburt62 - I am so sorry you are going through this. Caregiving for our PWD is stressful enough, without also being sleep deprived. Been there, done that and it was sooo tough. 

My DH's Seroquel dosage had to be increased and we added 10mg of Melatonin (fast dissolving, over the counter) at bedtime (or anytime his worst sundowning starts which is as early as 3pm). He also takes Sertraline for depression/mood, which took the anger edge off. It was never part of his personality before dementia.

Has your LO been checked for a silent UTI? When we had a sudden change to experiencing hallucinations (seeing things and people who were not there) and increased delusions (false beliefs. Some really wild and wacky ones, and then also dangerous ones), turned out that was the culprit (urinary tract infection). Would never ever have known to check that, if not for this forum. I did a home dipstick test, and confirmed he had it so the dr prescribed bactrin as an antibiotic that cleared it up and his behavior returned to baseline. He got another one maybe 7 months later, so now we are going to get a culture to make sure the UTI completely cleared his system this last time. 

Good luck to you! Take care of you first (like they say on the airlines, put on your oxygen mask, first - or you won't be good to anyone else). Don't feel guilty about that. We have to.

Sharpet

Also new to this forum. My situation is similar to yours but at a more manageable level I think. My husband has EOAD, with consideration of VD. My 84 year-old mother lives with us and my husband is convinced she is stealing things or hiding things from us. One day it was missing silverware (in the dishwasher) the next it is kleenex (box had fallen and was under the table). He just had some dental work done, didn't recognize the dentist and thought he didn't need the procedure (extraction of broken tooth). I am able to reassure and remind him of the realities, but it is getting worse. He has also become quite unpleasant to my mother, no matter how many times I reassure him that she contributes to the house is is 'not using all of our stuff'. He was on Seroquel but it made things worse. He is now on Venlafaxine which is better. He was recently diagnosed with REM Sleep Disorder (now on Melatonin) and Sleep Apnea (refused to use CPAP machine). I know this is all tied together (including refusal to shower) and I am beginning to worry about this getting worse. I am working from home due to Covid, which is good and bad. I am more available to help and I'm more available to help. Thanks for reading my ramblings

Phylburt62

Well, folks, things went from bad to really bad to worse all in the blink of an eye. Short story long, my DH is now in a neuropsych unit for AD, the one mentioned being out of state. The reason it is out of state is due to limited resources in my area.  There is really less than a handful of facilities in my state able to handle geriatric and dementia needs.  On Thursday morning things went into seriously scary mode when my husband lined up all of the carving/chef knives on our counter. He took all of the steak knives, paring knives, carving knives, etc. out of our drawer, leaving the table knives. He would occasionally pick up the carving knife and finger the blade as if testing for its sharpness.  He had been, basically, holding me in a hostage-like situation, for the past week but in those last 6 hours it became untenable and with extreme paranoia. I was on the phone with the doctor's office to reschedule our appointment that afternoon because of exhaustion when he brought the knives out. Thankfully, I was able to convey to the nurse I was talking to what was occurring. She picked up on the situation and contacted 911 for me while I fake talked about the appointment, and until help arrived. They had to take him down to load him on the gurney, but once he got in the ambulance he fell asleep.  I should say that I had finally gotten DH to take his Seroquel three hours prior, but it had not sedated him because he had so much adrenaline running in him. I followed to the hospital and he was resting when I got there, but woke up shortly after. Hindsight is always 20-20, and I knew from the prior ER visit that he would get agitated if I talked about him. He would get agitated if I left the room, so I decided to ask him if he was okay with me telling "our story" first.  He consented, but again became agitated physically. Nothing verbal, though. After sharing with the doctor, the social worker came in and asked for our story, too. At this point, things went south fast.  Eventually, they had to restrain my husband (took 5-6 people) and shoot him full of sedatives while putting him in restraints on the gurney. I made the decision to have him admitted to a neuropsych unit with the social worker, and due to his violent behaviors from Monday and Thursday, they petitioned to have him certified as incompetent.  They let me go back into my DH room once he was calmed down enough, and he was still so very paranoid, asking me in a whisper voice if I was getting him out now. This was the first time, honestly, looking into my DH's eyes that I could not see even a glimmer of him. My heart shattered at the moment. 

Since being admitted to the unit for stabilization, I have talked to him by phone, as had at least one of our daughters. He definitely knows who we are, but is not in the same timeframe we are. He believes he is at a job sight and has been for the last month, and will be coming home as soon as the work is over. I will take that. He seems happy right now. We are looking at a long-term facility for him to be discharged to, as I, being 21 years younger, still work FT to support us. If I am to be completely honest, I am terrified at the thought of having him home. This past week was so harrowing and terrifying I am suffering some PTSD from it (I have a counselor I talk with and have set up appointments with her).  I am not equipped to have him at home and don't feel it is safe, even if it might start out safe. He would pick up on that in a heartbeat and that is part of what scares me. I never imaged him going from one stage to the next so quickly, and I have had some medical professionals suggest I look into COVID Rage/Psychosis (we had COVID back in October, he being hospitalized) as a possible reason.  They do list a diagnosis as Dementia Psychosis, but COVID or just ALZ, this is horrible. We are lucky that our county does have a fantastic Alzheimer's unit attached to the medical care facility and it is my fervent hope and prayer we can get him placed there.

I am still numb right now, and am debating on whether to take a mental health day tomorrow just for me to do nothing or if getting back to work would be more beneficial. I am still trying to catch up on lost sleep and rest, and while I am not totally there yet, I do feel better than I have in some time. It was hard to come back home alone Thursday, especially as I had to put the knives back. All around me are memories, good and bad, that haunt me right now. I know in my head that my decision was the right one, as is the one to seek SNF, but my heart is crushed. 

Phylburt62

Cynbar, thank you for your kind words. It has to be out of state due to limited bed for this specialized care in the state I live in. My DH paranoia and delusions seem to be centered around protecting and guarding me which is a very deep and true reflection of his love for me. You may see my long post above with an update, but I truly - and in my heart of hearts - know that any behaviors he displayed were his inner-self's attempt to keep me safe from what he perceived as danger. I know he was very upset at not understanding what was happening to his mind.  He never accepted his diagnosis and I know that was part of his disease, too.  At times I feel so guilty over not seeing the signs and symptoms sooner, but his having COVID back in October changed the stage so very, very fast - almost like it was declining every day - and I was just not equipped to handle things.  I know he is safe now, as am I, and that SNF is a necessary evil in my head, but my heart hurts.

Ed1937

Phylburt, thanks for the update. I'm sure this is the best place for both of you. Never second guess yourself. You have done an outstanding job.

M1

So glad you are safe. And so sorry it's happened, but you are doing the right thing.

Sharpet

Phylburt62

So glad you were able to get the help you needed, even though it was difficult, Thanks for sharing and please take care of yourself too

VandyTor08

There's always a temptation to look back and second guess yourself, but believe in your instincts - they are usually right on.  I'm sorry this is happening to you, and it is so tough; to be honest, I'm not sure it ever gets easier until its over, and that is a different kind of struggle we all face.  But hang in there; talk to your therapist, and get some rest!  I have found long walks by the river have really helped me - if you don't have a park nearby, just walk the neighborhood, weather permitting.

Mint

So sorry you are having to go through this.  Take care

On The Journey

Phylburt62, you have made many good choices in the middle of a storm; your decision-making is admirable.  Doubting is good; we have to keep assessing situations as things progress and regress.  The fear is understandable; it helps keep us from making rash decisions.  You're doing a good job -- keep going, while you first take care of yourself.

Phylburt62

Thank you all for your kind words. I appreciate knowing you all are here for me, as I am for you, too.  I am so blessed to have such a wonderful support system. Be well, stay safe and healthy.

Peace