I'm shaking as I write this

Brenda, I'm so sorry this happened to you and your DH. I can't imagine the emotions you must be going through. Hopefully the new meds will help with this behavior. I understand your feeling angry but don't be embarrassed; it's not him, it's his broken brain xo

Please do not feel embarrassed. This is not a reflection on you. It’s your job to advocate for him, yes, but it’s not your job to control him- and you couldn't even if you tried.

This is something I had to discuss with my mom on numerous occasions about my step-dad. She was the one diagnosed with dementia first. She was so embarrassed by his behavior at the AL. I had to tell her she had to concentrate on caring for herself and it was not her job to control his behavior.

He’d behaved inappropriately for decades. Long before he was diagnosed dementia a couple of years ago. Not always as physical as your spouse - but more than enough to make women uncomfortable around him.

In your spouse’s case, I hope they can come up with medications that Help. Until then - do they have male attendants that could be assigned to him?

Brenda, it’s hard to see what this disease can do to our loved ones. I understand your embarrassment; sometimes I can’t believe what my DH has done. I feel I’m constantly apologizing for him. All you can do is your best, and you are doing that by getting him help. The staff knows and appreciates that, and doesn’t blame you. I’m thinking of you, and hope all goes well tomorrow.

Hopefully you are feeling some better now or at least reassured!

@White Crane sending good thoughts your way. You are an amazing wife and caregiver,

FWIW, my DH does not have FTD and is not on Depakote, but he has taken 300 mg of *Seroquel daily for several years with no negative impact. 100mg morning, early afternoon & night.

Not a big guy, but this fairly high dosage still does not sedate him. It’s just what it took to get a handle on his behaviors in mid-stages & we decided (Dr & me) that as of stage 7, if it ain’t broke don’t fix it.

I wonder if they might up your LO’s Seroquel dose a tad though. As M1 mentioned, there’s room.

I know this is heartbreaking and relentless. You are amazing. I hope he gets stabilized and that you are able to cut yourself some slack. Repeating: you are amazing!

Brenda, my heart bleeds reading your anguish. I hope they find the right dosages for your husband. Adding Depakote to my DH's regimen did the trick. I call it his miracle drug. But it did take at least 6 weeks to gel with the seroquel he was already taking. FTD is right up there with LBD, the two most complicated and difficult of dementias. Lack of sexual inhibition is one of the hallmark symptoms of FTD. At first, they thought DH had FTD due to where the brain showed shrinkage. Other than that, DH had no other FTD symptoms but more toward LBD. No matter. The disease is simply evil. Hope they find the right meds for your DH soon.

Brenda, as others have said above, this is NOT on you. No reason to be embarrassed; it’s this horrible disease that’s acting out, not the man you love. Please give yourself some grace. Thoughts & prayers that a new med regimen will help!

If your DH is not yet on hospice, now may be the time. If it's too early for hospice, maybe a palliative care option. My DW was with one hospice agency, then on palliative care, then a second hospice agency. In all cases the agency nurses visit the patient and report to the agency doctor. They have on several occasions added, subtracted and adjusted her medication without my DW ever having to leave the MCF. I have found them quite understanding about her medications. In our case they of course advised that some "nonessential" medications be ended, but they did not require this, they just didn't cover or provide them, I keep my DW on her thyroid medication for example.

Maybe this is a way to get a doctor who is more knowledgeable about the care of PWD. Even if they discharge your DH after a short time this could at least get his medications adjusted. This may not be a possibility for you but I thought I'd give you this suggestion.

Brenda I agree that’s completely inappropriate, especially in light of recent events. I would ask for a hospice evaluation too. Nothing to lose. Also, I would be very assertive about what his alternative plans are and I would go to the facility director with your concerns.

My experience was that doctor and psychiatrist at MC monkeyed around with meds and my DH was transported to the ER. That's how they get them out. He was admitted to the psychiatric unit and had been there five days when MC informed me that he would not be allowed back. Of course, he had drug induced mania due to changes at MC. in DH's case they refused to take him back. Geri Psych was able to adjust meds. I found a MC placement and all the information was shared with them. The second day they were calling wanting to decrease meds the Geri Psych had him on. I told them it was an absolute NO. They didn't change his meds.

I refused to use the psychiatrist at the new facility due to past experience. Visits with his Geri Psych were virtual. If you want to use outside providers, you could search for providers who will do virtual visits or come to the facility. That was my next step, but DH passed before I could get that set up.

As if the disease wasn't bad enough, care partners need a titanium spine and the will to be assertive to the nth degree to advocate for their loved one. I'm so sorry you and DH are being tortured like this.

@White Crane OMG! Please just take a moment to breathe in and out, if you can. I am so disgusted with the total lack of empathy (and common sense) of those we rely on (and pay VERY well!!) to help us and our LOs.

I definitely experienced their compulsion to tinker with DH’s meds the only 2 times he was at MC (for respite) and it caused him exacerbation of his asthma which had been under control, as well as weeks of trying to get his regular behaviors back to baseline due to doubling up and then totally skipping his Seroquel. For NO reason. WHY??!!

I was already wondering if your MC maybe was lax in monitoring or giving his meds properly when your DH had this most recent issue, seemingly out of nowhere. Now I wonder if they’ve been withholding the Seroquel due to this jerk’s personal bias.

I agree, written followup (even just list your atty as a cc on the email you send for starters), and hospice eval may work— I’m just so sorry you both are going through this.

The disease/s suck but the system is like a pimp just taking advantage and generating ill-gotten gains just because they can. The titanium spine (yes, Victoria!) we caregivers need to just hold up under the weight of too little help and then actual harm due to so much exploitation — it is just a sin and a shame as my dear mom used to say.

I was literally fuming today due to similar games the equally dysfunctional home care agency game is—- and the stress, disrespect, wasted time, and patient safety issues that seem to be baked in when one person can’t speak for themself so the system makes money off of the family’s need to try to make it work, for even substandard or sketchy support. Zero accountability and the personal integrity factor is looking non-existent from where I sit, today.

We all deserve so much better. I’m getting off my own pity pot for now though, as my heart is just breaking for you friend. I’m so sorry this is happening and truly pray for a miracle for you and your DH right now.

Maybe I misunderstand or misread, but Is the MC doctor prescribing and leaving your husband on Risperidone? Maybe he is switching Seroquel for Risperidone? Both are antipsychotics and both are black box. (At one point my husband’s memory care P.A. suggested he switch from Seroquel to Risperidone as it might help with his high level of paranoia and he tolerated the switch just fine, meaning his delusions did not return, but he’d been on seroquel for a couple years by then.

Maybe your husband’s doctor hopes your husband will respond better to Risperidone following the incident with the volunteer? It seems wrong though to switch the Geripsych’s drugs so soon as your husband had not been on the regime very long (unless I again misunderstood). His doctor’s reasoning that he doesn’t like Seroquel because it’s labeled black box, but yet prescribed Risperidone doesn’t make sense either, because they’re both in the same, so to speak, box.

I’m praying your husband can be stabilized and isn’t once again sent to the ER. These matters are so upsetting to both the person with dementia and their spouse/partner! Additionally, I hope you get to return soon to visit him and can see for yourself how he is doing. Wishing you both peace!

Risperidone and Seroquel carry identical black box warnings and act similarly. Risperidone is a bit more sedating. Idk why they couldn't have just increased his Seroquel. The whole thing just doesn't make a lot of sense. But i think the question about missed doses is extremely important. Let us know. I guess it's good that things are calm for now.