Psychotic - Seroquel not helping

jmlarue

Background: DH with vascular dementia began experiencing hallucinations and delusions that fueled extreme anger, threats, and numerous attempts to strike me beginning last Friday. An ER visit to check blood work, UA, and CT scan showed no organic cause for his psychotic behavior. He was discharged home with no referral for inpatient psych evaluation. With repeated distraction, redirection, and lying my butt off, I managed to give him THC gummies every 6 hours over the next 4 days to tamp down the threats toward me until I could consult with his geri-psych. She prescribed 25 mg Seroquel at bedtime with an accelerated titration schedule to increase the dose in 3 days. 

His first dose was on Thursday at 10 pm. Within 30 minutes he was asleep in his chair and repeated attempts to awaken him to take him into bed failed. Finally, at 1:30 am, I managed to sleepwalk him to the bed. He slept soundly until 11:00 am. I didn't. On awakening yesterday, he was confused and uncooperative. He was verbal, but nothing he said was intelligible. He spent most of the day occupied with searching and sorting through drawers, closets, and junk out in the garage. I left him to it to avoid triggering another violent episode. By dinnertime, he appeared more alert, ate in silence, and retired to his easy chair to nap for 3 hours. I woke him at 9:00 pm to take his evening meds and suggested he go to bed early because he looked so tired. He agreed, so I gave him his second dose of Seroquel at 9:30 pm. 15 minutes later, he angrily refused to go to bed and by 10:00 pm he's was sound asleep in his chair and could not be moved. I covered him with a blanket and left him there.

He woke me this morning at 4:30 am. He had shoes and coat on and was ready to go out the front door. When asked where he was going, he said he didn't know. I asked him to wait for the sun to come up before he went anywhere. He was nasty and verbally abusive, but sat back down in his chair, arms crossed like a pouting child. 30 min. later, he was asleep. It's now 7:00 am, he's still sleeping, but I am exhausted physically and mentally. When he finally wakes up, if he is still off the rails, I intend to call 911 to transport him to the ER and insist on a psych commit. Put a fork in me. I am done.

ButterflyWings

J- you need some rest and support. I am angry on your behalf that you’ve been left to fend for yourself with this very volatile escalation. And you have done AMAZINGLY well!

It may be too soon to tell if Seroquel is working or not. Seems like he is sleeping and maybe getting some impact from it.

My recollection is it takes a week or more, and my DH was up to 75mgs in no time before the worst of his exit seeking, barricading doors and other hallucinations slowed. That was 25 mg a.m., 25 at lunchtime and 25 mg at bedtime often with 10mg of melatonin whenever sundowning started (could be anytime from 3:30 p.m. to 3 a.m.). 

His neuro and PCP were on speed dial for a while. Squeaky wheel was my middle name for a long time. Heads up- be super sure you are watching him swallow the Seroquel every time. I found the little tabs here & there many times, realizing that’s why I thought they weren’t working some days (!) Crush them if you have to. But I’d be on the phone to after hours coverage every time he ramps up. You should not be going through his with no urgency on the part of his docs. 

 (*Added: Good that you were able to redirect him from leaving at 4:30a.m! Also, do you have to wake him up to move to bedroom? I was and am very flexible (lax? lol) when just needing my own calm and peace in the storm. Don’t want to shower? Ok. Don’t want to change clothes? Ok. Want to sleep in the chair? Ok.)  

Be safe. 

Joe C.

J, Sorry you are having to deal with these struggles. As BW stated in the post above, it takes some time to see the benefits of seroquil. Seroquil was a lifesaver here but my memory is that it took about 2 weeks for DW’s delusions and agitation to begin subsiding and probably 4-6 weeks before the delusions completely subsided. It the beginning the medication really zonked out DW similar to what you are describing with your husband but as she acclimated to the medication those effects lessen considerably. You may need to reach out to the prescribing physician about tweaking the timing and dosage for the medication. DW’s initial prescription was 25 mg once per day but I had the doctors permission to tweet as needed. With in 2 weeks I found that 12.5 mg, 3 times per day worked best. DW was less zonked out with 12.5 mg than giving 25 mg at once and giving 3 doses a day keep her calm throughout the day. Good luck.

Just Bill

What a nightmare jml. My wife used to get up in the middle of the night hallucinating and extremely agitated. Ambien puts her out 15 minutes before bed and she sleeps the night. And she wakes up in a good mood and it lasts most of the day. Fatigue, hunger or thirst are her triggers like a teething baby just gets fussier and fussier. We kid about a tranquilizer dart but that is exactly what I am doing with ambien at night. I think if I were in your shoes I would go right for the adivan and knock him out to a manageable level. I attack the symptoms. If she is depressed then anti depressant. If she goes on a rampage then anti rampagant. I made the last one up but at this stage of game it's whats best for me. What makes her more manageable. Reasoning with her has been off the table a while. Peace through medication.

jmlarue

This is so bloody insane. This past Wednesday, DH's VA psych doctor informed me that they do not have an inpatient psych unit at the Seattle VA. She said if I needed protection, I would need to call 911 and have him transported to the ER and insist on a psych commit somewhere in the community. Was also informed that none of his VA psych doctors are reachable after hours or on weekends - of course, this being a holiday weekend, no one will be available until Tuesday or Wednesday at the earliest.

Since I'm clearly left to my own devices, here's what I propose to do...

Going to follow Jo C's lead and give DH a half dose (12.5 mg) of the Seroquel at Noon, 6:00 and right before bed. If it keeps him non-violent, all good, I'll soldier through until Tuesday. If at any time going forward he tries to attack me again, I will leave, call 911 and have him transported to the local ER, by force if necessary. I will NOT allow him to be discharged home. I expect this is going to turn into a crap show, but there are just no other options available to me. I won't be posting again until after the dust settles.

ImMaggieMae

I’m so sorry you’re having to go through all of this. Long weekends are the worst for trying to reach doctors. Is there any chance that the residual effects of the gummies were still in his system and the combination was causing the extreme sleepiness?  I hope you can find a workaround to keep him calm over the weekend.

My DH started on 12.5mg of Seroquel for extreme agitation and obsessive behaviors. It worked within a day or two but had to be increased a couple times within a month and he was then switched to Risperidone during a weeklong hospital stay to find meds that worked. He was admitted to the hospital from ER after being awake for at least 36 hours. He wasn’t aggressive or violent but was bouncing off the walls and there was no settling him down. I don’t recall the Seroquel making him sleepy. The Risperidone is taken am and pm. It doesn’t make him sleepy, at least during the day, but calms the agitation. At night he takes 6mg of melatonin with it and sleeps soundly through the night. He sometimes asks me at night while we’re watching tv if it’s time for his “injection” yet. The Risperidone is liquid and is pulled from the bottle with a syringe. (No needle, I put in in his mouth.) I’ve asked him if it makes him feel better and he says it does. I’ve tried asking how it makes him feel, but the closest answer I can get is “calm, but not right away”.  He takes it about an hour before going to bed. He also takes memantine am and pm.

Buggsroo

Jmlarue,

I am so sorry this is happening, this is awful. The horrible thing is dealing with the agitation, threats etc. I honestly think he does need to be admitted and his meds adjusted so he can return to a calmer state. You being frightened to be around him is awful for you, I am glad you have a game plan. I wish you good look, and there’s always a tranquilizer dart gun in your future.

Mint

Jmlarue,

I’m so very sorry both of you going through this.  

Joydean

JM, I know you said you would not be posting again until. All the paperwork I get from dh’s doctors from VA always say in case of emergency call 911 ! But they VA dose have a 24 hour help line. I have had to use it several times! 

Lynne D

JM, do you have a safe room and a bug-out bag? 

I have a room with a door and I keep a doorstop on the inside to “lock” him out if necessary. I get cell service in that room (it is in the basement) and keep my chargers, purse, a change of clothes, a jacket, toiletries, etc. there. The palliative care practice social worker recommended this.

I have cameras in the house in areas he accesses, and hide out in my room and monitor him when he is raging.

A bit sick to live like this, but what are you gonna do?

Stay safe, my dear.

Jo C.

Words do not suffice to say how sorry I am.  It is awful to have to live like that.  I agree that if he acts out violently again, having him transported to the ER for GeriPsych placement would perhaps be the best move for both of you.

Lynn; good planning, but once again, I am sorry that you are having to live like that.  Has he ever been in GeroPsych? 

It dawns on me, that none of the commercials re Alzheimer's ever, ever show this sort of behavior as part of the disease process. Mostly it is just memory and far cleaner on multiple different levels than what is actually experienced in real time in real housholds.

How I wish there was a way to make this better and do so swiftly; please everyone, do not minimize your own risk and stay safe.

I send warmest thoughts your way with hopes that all works out well no matter which route yu decide to take,

J.

AnnMB

I am so sorry that you are going through this J.

When DH was put on Seroquel, he got 1 - 25 mg pill at night. The first night was hell to say the least. He was out of bed in a delusion and all over the house with me behind him keeping him safe. He did that for well over an hour before I got him back into bed. The medication did work but it had to be increased 2-3 weeks later. One pill at breakfast and one a night. Again it worked until we had a couple of nights that I had to bring in family to help me keep him safe. Now he is on 75 mg - 2 pills at bed time and 1 in the morning. So far he has more good nights than bad.

I am the person who tries to figure out what triggers his delusions. Change of routine? Too much stimulation late in the day? No nap? I find all 3 to be triggers that cause him to be delusional. The last episode (yesterday) was caused by 3 hours of respite an hour of rest and then 2.5 hours at DS's for a BBQ with friends on July 1. It was noisy with lots of laughter, kids in the pool, etc. He got over stimulated. He did sleep well though. DDIL and DGS were over to mow the lawn yesterday morning and they were rushing to get home to do theirs before it rained. DH had a nap in the afternoon, woke up delusional and it was fun and games until 1 a.m. He's coming down today so it will be a routine, quiet, and a nap.

One of the things I am finding here (Canada) is how long it takes to get an appointment with the specialist. I know they are busy people. The other thing was I was told not to call 911 but to take him to ER and have him put into respite for a few days especially if I felt threatened. Good one if you are feeling threatened. ER's in smaller hospitals are being closed due to staff shortage (doctors) which is scary. I'd have to travel 30 minutes or more to the next hospital if ours was closed or bring him home and, between family and I, try to calm him down.

You are exhausted as you are being put through the wringer. It is so hard on the primary care giver. Do you have a respite worker come in so you can get out of the house? Do you have family to help you during the delusions? Have you talked to Alzheimer Society to get into a support group? I don't know exactly what you qualify for in the US but here we have Continuing Care for respite. Alzheimer Society has set me up to be a part of Zoom meetings and both agencies will check back to see how I'm doing. We have family close by to help when I can't get DH calmed down and they've come at midnight twice. They will come during the day when I need help to calm him down. 

I am also finding that I need to take better care of myself. The respite care we get is for both of us so I can go shopping, do my sewing, or visit with a friend. If I'm tired, I nap when he does but not in the late afternoon as I won't sleep at night. While your DH is sleeping think of things you'd like to do -- have a nap, read a book, listen to music or watch TV. Use it as your down time. It takes time to figure this out and the worst time to figure it out is if you are in survival mode. I have a book that I write down things I want to do during the day, tick them off as I do them, move them to another day if I don't. I write down what is for meals so I can keep track of that if I'm in survival mode. The one thing I want to do more of is freezer meals and get a Insta Pot to cook them in. I have found having extra meals in the freezer to be a life saver some days.

I hope that things improve for you and that you get some much needed rest. You are in my thoughts as many others on this forum are.

Lynne D

Jo C,

My husband has not been in geripsych. I did message the PCP to find out what would happen if I called 911 or take him to the ER. 

There is no geripsych hospital in my state. Maybe they would transfer him out of state? Maybe he would go to a non-specialized psych lockdown? 

If I take that path I want a positive outcome. My plan is to see what the Seroquel does and adjust as necessary. Fingers crossed!