Hellish weekend - Next step, psych drugs

jmlarue

DH with VD has suffered another sudden change in behavior - likely caused by more micro-vascular stroke damage last week. Beginning Friday afternoon, he suffered a major meltdown where his paranoia, hallucinations, and delusions were in full flower. He is seeing people, whole groups of people, who (in his mind) are conspiring, stealing, pilfering through his stuff, planning to sell our house, making him leave...worst of all, they're telling him that I am a part of the great conspiracy. Of course, that focuses the anger and aggressive acting out in my direction since he's unable to identify any of these "others" who are making his life miserable. It's been a hideous weekend of incomprehensible rantings that escalate to attempts to hit me. Thankfully, I've kept my situational awareness intact and avoided getting hurt. Escape routes were planned. Cell phone was kept in hand and caring neighbors placed on alert in case I needed sanctuary.

His VA geri-psych doctor was called at 8:00 am yesterday. She finally returned my call at 4:00 pm instructing me to send him to the local ER (by force if necessary) to have him checked for UTI or other organic reasons for the delirium. Afraid to see him physically restrained by the local cops so medics could transport him, I managed to slip him a mickey in the form of a 10 mg cannabis gummie that he saw as the offer of candy. Thankfully it worked to calm him enough to get him in the car and transport him to the ER myself. Four hours later - FOUR HOURS! - the UA, blood work, and CT scan had found nothing amiss. I was absolutely gobsmacked by the way the ER doctor tried to reason with him about controlling his anger and not trying to attack me when he was released. Good Lord - are none of these so-called "professionals" educated about the insanity of dementia?

His geri-psych is supposed to call me tomorrow to discuss putting him on a psych drug (sure, sure, take your time. No worries, here). Meantime, this lady in the School of Hard Knocks with dementia is needing to keep her DH moderately high on weed gummies so my whole world doesn't come crashing down. The temptation to simply lose it and unload in a verbal rant, liberally laced with obscenities, is getting harder to control. DH may not be ready for placement, but I am. Praying the psych drugs will work and buy both of us a little more time.

jfkoc

I was relieved to read your last paragraph....Gummies are, perhaps, underused!

Lynne D

Oh my gosh Jmlarue! What a hellish time indeed.

Thank you for sharing your journey. You write with such clarity.

I wish I had advice for you. Your posting helps us all. Hang in there. I’d like to say it can’t get worse, but who know with this disease? It is a comfort to have a safe room and your phone and neighbors mobilized. I have the same and it gives me some peace of mind.

ImMaggieMae

jmlarue, my DH has been on Risperidone for several months and it is like a miracle drug for him. He was never aggressive or mean, but had numerous repetitive behaviors that went on night and day. He was so agitated prior to a week long stay in the hospital last September that he couldn’t sit still for 5 minutes. After several drug missteps in ER and after being admitted to the hospital, they put him on a small dose of the Risperidone. It was effective within about 2 days and he returned home with a more ‘normal’ personality. His memory continues to decline and he still has one repetitive behavior, but nothing like before.

jmlarue

Thanks, all. It always helps to have this sounding board where I can vent and be understood. So many of you are facing or have faced similar challenges. You are all a blessing for me.

Jfkoc - I'm learning that the THC gummies are very often the only tool at my disposal when things start to go sideways. It's not that I'm reluctant to use them. It's all about timing. When the off-the-rail behavior starts, it's sometimes too late to find ways to get DH to accept the offer of a gummie. Surely, I'm trying to poison him, doncha know? I always feel a bit tenuous, too, because I'm not well-versed in dosing. I'm a little fearful of overdoing it and possibly adding to the paranoia and hallucinations. I'm basically sticking with the 10 mg every 6 hours. So far, it's been enough to calm the anger and the lashing out last night and today. The nonsensical verbal diarrhea can be a bit much but, at least, I don't hear any danger in it.

His geri-psych mentioned Seroquel and skipped right over my question about Risperidone. I did ask that she be very cautious about what she prescribes as I was not willing to trade one bad situation for another - like double incontinence. Like many of you, I look at the black-box warnings about using this drug with PWD and have worries. I know others here have reported that Seroquel has been a lifesaver, but are we talking about calming obssesive/compulsive behaviors or the angry, aggressive, delusional symptoms?

Just Bill

Yikes ! That's definitely a rough day. Sometimes all you can do is breathe. There is something called a box breath: Inhale 7 seconds hold 7 seconds exhale 7 seconds hold 7 seconds. Do about 4 or 5 iterations of that and your DH may still be losing his mind but you will be feeling a lot calmer. If you are experiencing an adrenaline dump, box breaths are the best way to recover. Good luck.

Twin Mom

Seroquel has been a godsend for the anger, aggressive, nasty behavior in our world.  Current dose is 200mg nightly, along with trazadone, and clonazepam....and he is not "drugged" seeming in even my wildest imagination....I would not trade the cocktail for anything.

jmlarue

Thanks Bill and TwinMom for the helpful and encouraging feedback.

ButterflyWings

Jmlarue, what a terrible time! I am happy you are safe and have a temporary solution in the gummies. It really is disgusting and infuriating how little some med professionals know about dementia. It’s not like info is hidden— a quick google search could help and how about listening to spouses and other caregivers’ knowledge rather than slow-walking you (us) as if we are the delusional ones.

“It is extremely urgent and a patient safety issue”, are the magic words I have had to use at times and in writing, to light a fire under some folks. The paper trail helps. Shouldn’t have to be that way when you are already having to try to juggle an emergency situation with someone who is a danger to you both at the time. 

To answer your question, Seroquel was prescribed here when angry, confrontational, delusional behavior and hallucinations ramped up and it was clearly unsafe. I’m so sorry you are dealing with this. Stay safe.

Joydean

Jmlarue, I don’t have any advice just wanted to let you know I’m thinking of you. Hope you stay safe and thank goodness you have the gummies for emergency! ER sure didn’t help. Hope his doctors will come through for both your sake’s. Please stay safe! Prayers for you and your dh.

riajean

What a horrible experience but so expected today.  No one seems to be well educated or even barely educated in dementia and that's a travesty, especially when one is dealing with behavioral issues.

My DH never had behavorial issues before EO began and they increased over the last several months at MC - thank God.  It was too upsetting for me when he was home - so I'd go to another room or outside because his yelling and accusing me was just too hard for me.

Case in point at the ER on Monday, the doctor asked if I knew he was on a seizure medicine and, of course, I flipped out - upset that she brought this up and what was I supposed to do about it?!  Of course, no DOCTOR will see my husband or even try to treat him because he's terminal and mostly we are just dismissed.  Seven plus years of this horrible behavior by the medical profession.  When the doctor saw how upset I'd gotten, she calmed down saying, "this med is used for other purposes too".....but that didn't help because her concern was already 'out there'.

Sending my best to you, prayers that your gummies help.  Maybe even gummies without the THC could help, then you wouldn't perhaps have to be so concerned about overdosing him?  Just a thought.   Thinking of you.

jmlarue

Thanks to everyone for your thoughtful and helpful responses. You are a rock for me when I feel like my feet on on shifting sands with this awful, awful disease. It's my personal failing that I don't react well to being out of control of a situation. I've been a "fixer" my entire life and here I am, at 71, finding myself helpless and defeated at every turn in the road. That's my perspective, anyway. I know I'm not alone in feeling like caregivers have been thrown into a life and death battle with an enemy no one understands. We are all just shadow boxing our way through this to a very certain end.

All that being said, I'll cling to the sliver of hope that DH's doctor will prescribe some medication today that will help with this awful behavior. Although the THC gummies have certainly taken the edge off of things, I'm not confident that it's a long-term answer to keeping either one of us calm or safe.

HWS

 I just wanted to give you an insight from my experience and a perspective of my DH using cannabis. My DH uses THC in the form of a tincture. Tincture is a cannabis oil.  I administered it by an eye dropper (35mg per dropper) twice a day. There are lines on the dropper for different dosages. He has been using it for over 2 years.  It keeps him from being so "Vibrant" as our PCD says. He also uses CBD oil that is used for pain. It doesn't have any THC in it. He is crippled with arthritis on top of having dementia (diagnosed over 3 years ago). He has a type A personality. Very strong willed very independent and not a person you can tell what to do. He started using medical cannabis for his pain. He had a prescription for Vicodin. Our PCD said he couldn't use both, so my DH said the cannabis helped him more. It also kept him calmer. The Vicodin tended to agitate him. He still gets very agitated sometimes. Yelling at me and accusing me of things. He doesn’t scare me like he did before the cannabis. His outbursts don't last as long. They are just very hurtful. I think his outbursts also has to do with his dementia. He gets very frustrated sometimes because he can't control things because his mind isn't functioning like he wants it to.  My investigation into cannabis has told me that you really can't overdose/kill a person using it.  You can investigate it for yourself. I'm not here to tell anyone to use cannabis or how to use it. I just wanted to tell you our experience and what it has done for my DH and me. He's not willing to use any prescription pills, but he is willing to use the cannabis. There is so much else I must deal with right now. Other decisions that are going to have to be made as this disease progresses, because his dementia is getting worse. So right now, the use of cannabis is helping him and me.  Thank you for listening 

jmlarue

HWS - Thank you for the input on the cannabis. I haven't been fearful of using the THC aside from the concern that a higher dose might add to the hallucinations, delusions and agitation he has from the dementia. About a year ago, I gave full-spectrum CBD oil a 90-day trial with DH. Sorry to say, there was no observable benefit for him on either the cognition or the behavioral front, so it was discontinued. He has no chronic pain. DH's doctors are aware that I use the THC gummies when necessary. This past 5 days, it has been the only tool at my disposal to calm his psychotic behavior. Once he is prescribed an antipsychotic (presumably Seroquel) I will try to avoid using the THC to eliminate the possibility of interaction or producing confusing results from the new drug. Will I use it if I need too? You betcha. The one advantage to the tincture is that it's fast-acting. Unfortunately, he finds it unpleasant, so it's hard to convince him to take a dose. He sees the gummies as an offer of candy, instead of medicine, so it is easier on both of us.

Lynne D

JM,

I find myself in a similar situation. After unclogging a toilet and cleaning a bum-smeared bathroom, I had the audacity to suggest my HWD shower and put on clean disposable briefs. That resulted in a rage that lasted until midnight, and him striking me in the side of my head.

I called his GP’s practice and talked with a nurse during his rage, and within earshot of it. That is an effective tactic for conveying the urgency of the situation. We have a telehealth call this very afternoon.

Gummies do not work when what you need is a tranquilizer dart. In fact, they sometimes don’t work as I wish they would with my husband, making him a very silly, yet still angry person much lest apt to accept redirection.

I look forward to learning your next steps. Thanks for sharing!

jmlarue

Oh, Lynne, I am so sorry he managed to hit you. None of us should become a punching bag just because our LO is incompetent and cannot be faulted for their dangerous behavior. I get the feeling that you are living with a life sentence with your DH - where placing him in a facility to protect yourself is just not possible. This is a horror for you and I wish I could wave a magic wand to secure your freedom.

I had a good conversation with DH's VA geri-psych. She is prescribing Seroquel (Quetiapine) and seems to have high confidence it is the better choice over Risperidone. Although there are some side effects to watch for, none of these cause me great concern. All I care about at this point is that it sedates my DH without making him an invalid or a double incontinent nightmare. I was very up-front with her that should that happen, he will need to be placed in a VA nursing facility without delay. Fortunately, he is entitled to that care - free of charge - and I won't hesitate to demand it when it becomes necessary. I wish such an escape hatch was available to you. Since it is not, I will simply encourage you to impress upon his doctor the urgency in treating him with an anti-psychotic to prevent him from abusing you. I managed to avoid calling 911 and having my DH committed for a psych evaluation, but don't believe for a minute that I was not ready to pull that trigger if it came to a point of choosing my safety over his comfort. I've given up every shred of normal life to care for my DH (as I know you have). Allowing myself to be battered or killed is a bridge too far. I'll do whatever it takes to survive this awful disease. I hope you have the same resolve.

Lynne D

I am so glad you got a drug trial and have the VA as an option moving forward. You certainly deserve some relief and he deserves good care (as all dementia patients do).

Let us know how the Seroquel works (I feel like I am one step behind you!)

Just Bill

Who in this group has not thought of a tranquilizer dart at least once ? Obviously you would never follow through but it definitely crosses your mind.

JudyMorrowMaloney

I have dealt with so many idiotic health care workers that I don't even want to deal with them anymore. When my DH accuses me of something I don't even entertain it. I once had to call an ambulance because he was hallucinating and had delusions and got violent. It landed him 2 weeks in Geri Psych. I too give him those gummies and it puts him right to sleep. I hope the resperdone keeps working. As far as these idiotic health care workers go, I only deal with them when I really have to. I have also cancelled all home health aides because I got tired of people coming late or not showing up at all without any notice. The companies apologize profusely but the problem continues. I don't need their apologies or the stress that comes from their poor service. When the time comes when I can no longer keep him home, I will place him somewhere.

jmlarue

JustBill - Can you see me raising my hand? Thought about it, laughed about it, and forgot about it many times. I've also entertained visions of a sturdy straight jacket when DH has been taking a wrecking ball to the bedroom for 6 hours of frantic searching and sorting through drawers and closets. Thank heavens there are no thought police. Sometimes the wild imaginings are the only thing that gets me by.

Stuck in the middle

Race Brothers' farm store sells an air rifle that shoots darts for the purpose of vaccinating large animals.  Just saying.

MaryG123

Too funny y’all!

Jo C.

That certainly was a hellish weekend; I am so very sorry.  You were let down by those who were most able to help.

Has your husband seen a dementia specialist as well as seeing his Geriatrician?   I wonder if your husband has had Lewy Bodies Dementia ruled in or out by a specialist versus having Alzheimer's.   Florid hallucinations are part of the LBD experience.  My own LO was misdiagnosed with having Alzheimer's by the Board Certified Geriatrician and placed on contraindicated meds.

I am deeply sorry it took so long for the doctor to return a crisis call; that was not handled well.

As for the ER physician, the safest and most helpful approach would have been to have your husband transferred to a GeriPsych Unit in a nearby facility.  This would have placed your husband in a setting where he could have been assessed on a 24 hour basis, and received care from a  Geriatric Psychiatrist and meds could have been started with oversight for effectiveness and any side effects. I am very sorry this was not done.

I am an RN and yes, it is appalling how many healthcare providers from MDs to RNs and staff in most ancillary departments have no clue what dementia involves; nor is there an understanding about the various kinds of dementia and what is involved in all of that including meds and their effect.  Some are better and do, but they are usually in the minority.

I think having a printed short note  re "My husband has dementia; despite appearing alert, he is not able to process or understand or retain information . . . etc., etc., etc.; PLEASE do not give him instructions and expect he will be able to follow them or retain them in memory nor have the ability to process them; he is not able to do so."  Something of that sort . . .

It is beyond frustrating and sometimes the suspicion for behaviors can be placed upon the poor beleagured caregiver instead of the person with dementia; I have seen that happen.

If you need to get him back to the ER again; refuse to take him home due to the fact that he is a danger to you; it is no longer safe and that you wish for him to be transferred to a GeriPsych Unit.

Glad that meds will now be tried; watch carefully to see what happens. If he has LBD rather than Alz's, he may have a negative reaction.  Next time he sees the doctor, ask for the diagnosis for type of dementia to be confirmed to rule out other types of dementia such as LBD or a behavioral variant of FTD.  Just worth a try. 

And as far as insisting he be placed in a VA facility "immediately," that may not happen due to the fact that at most VA long term care settings, they are full and have waiting lists, so do be sure that you have an alternate Plan B in the wings should the need arise.

So hoping all will go much better with the med on board; let us know how you are doing, and stay safe.

J.

jmlarue

Thanks for the laugh, Stuck. I needed a that.

Jo C - Much appreciate all your insight. You are such a treasure for all of is with your experience as both a dementia caregiver and your medical professional knowledge.

If I hadn't bee able to tamp down DH's psychotic behavior with the THC gummies, you can bet your life that I would have refused to take him home. Due to delays in getting the script for Seroquel ordered and filled, I needed to keep him dosed with the gummies for a couple of days. It wasn't a perfect solution, but it was enough to moderate his anger and lashing out allowing me to step away from the Code Red alert level.

DH has a geri-psych at the VA memory care clinic in Seattle. He was initially diagnosed with vascular dementia because they were able to see the residual "flares" from micro-vascular strokes when they read the results of his MRI. He had flares of varying sizes in about a half-dozen places, but only one appeared in the frontal portion of his brain. If he does not tolerate or has any adverse events from the Seroquel, I will definitely ask his geri-psych to consider further testing for FTD or LB.

I like your suggestion on having a note prepared regarding his mental status and deficits. I think that would be very helpful going forward, especially in an ER or Medic response situation.  

I do have DH on the waiting list for about 6 VA facilities in three states. Most are saying the waits are anywhere from 6 months to a year mostly because of staffing shortage during the pandemic. They are hiring and bringing more beds back into service now. Thank heaven my DH didn't need placement in the past 2 years. Most told me they did not take any new admissions during that time. Many have reassured me that they do try their best to find an open bed in cases where the veteran's health has declined to the extent that they can no longer be cared for at home. Plan B is to find a short-term temporary placement in a private facility or in-home caregivers through the VA Aid and Attendance benefit. We have a VA social worker already assigned to facilitate the process for placement in a VA facility or in the community as an interim placement, if needed.

I'll return with an update in a few days on how the introduction of Seroquel is working out. Here's hoping it brings DH and me some much needed relief.