I'm shaking as I write this

White Crane

Today was supposed to be a happy day. I had invited some close friends over to thank them for all their help during my recent move. Right after they arrived the MC called. It was the social worker and her voice told me something was wrong. She told me my DH had tried to get too friendly with a volunteer. She said the volunteer had been visiting with him in his room when he asked for more magazines. She left the room to get them. When she came back, he closed the door and grabbed her backside and then tried to grab other parts of her body. When she pushed him away and tried to leave, he pinned her to the door and tried to kiss her. The staff called the doctor and he has prescribed resperidone and lexipro to try and tamp down this behavior. He has only been back at MC for a few days after being in a geripsych unit for two weeks. I thought they had him on a medication regimen that would allow him to be calm and more peaceful. He had gotten violent three weeks ago and had to go to the ER and then the geripsych unit.

I feel both numb and near tears at the same time. No wife wants to hear this about her husband! He has always been a gentleman and would be horrified if he were able to comprehend what he had done. It was horrible to listen to the social worker describe what had happened. I told them I would be at the MC in the morning but really I don't want to go. For some reason, I feel embarrassed…and angry that he would do such a thing!

Brenda

Caro_Lynne

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

Jazzma

Brenda, I'm so sorry you have to experience this. Remember that THIS IS NOT your husband, as he was. This person has a grave disease that is redirecting his brain and his actions. It is not anything for you to be embarrased about or ashamed of. It's a disease. The people working with him understand this. It does not represent who your husband was. Please find comfort remembering the wonderful person he was.

midge333

Ya, it's the disease not your husband. Sorry! Nothing for you to be ashamed of. Be kind to yourself.

M1

I am so so sorry. It's absolutely nothing to do with you but still you feel responsible. i would feel the same.

I'm curious what meds the geripsych unit had him on? I hope for your sake he doesn't have to go back.

perhaps you can discuss strategies for this not happening again. Not allowing private visits in his room comes to mind, and having two on one staffing so that no one female is left alone with him? Hopefully it is a one off and won't recur. Good that they were on top of it so fast- but I'm also sorry it ruined your planned time with your friends. It's things like this that leave me praying for it all to just be over.

please let us know what transpires Brenda, you know this community has your back.

Quilting brings calm

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?

SDianeL

A person with dementia may experience changes in how they respond to sex, be inappropriate or aggressive, mistake a person for someone else, or behave sexually in public. There are ways to manage challenging behaviour.  The facility should know this. It’s not him. He needs medication that will stop his sexual desires. Talk to his doctors.

clarinetist

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.

Nowhere

A female volunteer should not have been in his room. As M1 said, definitely take this up with staff. And as other’s have mentioned, it is the disease, and not reflective of his true self. He is ill and vulnerable in his thoughts, moods, and emotions, and not responsible. In situations like this, he was not protected, nor redirected preventively by staff. The disease itself delivers blows and I do understand how much it hurts. I’m so sorry.
I hope you will soon again see glimpses of your husband’s healthy true nature. He is in there! May time help with his behaviors as the disease marches forward. In my husband’s path of Alz. tough behaviors, we have entered a most welcome reprieve. Behaviors aren’t forever with this disease. Thank God!

White Crane

After a sleepless night, I got to the MC around 10:00 this morning. I had a talk with the social worker. She assured me the young volunteer was okay but shaken up. The administrator called her and talked to her. She also said the same thing all of you have said; I don't need to feel embarrassed. When I got to the unit, I talked to the nurse. She said DH was still in his room and had not gotten up for breakfast. He was awake when I entered and I knew almost immediately that the new medications had not taken effect yet. He was grabbing at me as soon as I sat down. He also kept rubbing his genitals. I asked him if they hurt but got no reply. Then he started to get up so I got myself positioned by the door and walked to the nurses desk. He followed and was again trying to grope me and hang onto me. Very unpleasant! I finally got him to sit down and talked a bit more to the nurse. She said they had instituted precautions and no one was to enter his room alone. She also reassured me that they could handle it. I hope so. I don't think I will go back for a few days but will call and check on him.

M1, the medications from the geripsych unit are: Depakote, 250 mg AM and 500 mg after 5:00 PM; Seraquel, 50 mg at 1:00 PM and 25 mg at bedtime.

M1

that sounds like a good combination. They can measure a Depakote level to see if it’s in a therapeutic range, and there’s plenty of room to move on the Seroquel. Maybe it’s just a matter of dosage adjustment.

Sounds like they are on top of the situation and I’m glad. Perfectly fine for you to stay away for a bit

jfkoc

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

Rocky2

Brenda,

I am sorry this is happening. It sounds like the doctors and staff are working to find the right meds. I am praying for wisdom, and patience for all concerned. Also asking for peace for you.

Tom

ButterflyWings

@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!

CindyBum

Oh, Brenda. I'm so sorry. That must be so difficult to take in and process. This damn disease.

Big hug.

Dio

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.

Shelly / Texas

I am so sorry you have to navigate this! We are here for you!

CampCarol

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!

White Crane

The nurse from MC called me on Thursday and said the doctor was stopping DH bedtime dose of Seroquel! I told her I did not want it stopped but she said he had already stopped it. She also said that the MC doctor does not like Seraquel. I felt so angry and so helpless! I had met the doctor for the first time on Monday and he told me he wanted to take him off Seraquel. I argued with him and told him the geri-psych had put him on it and I wanted him to stay on it. He said Seraquel has a black box warning on it and it kills people. When I still argued with him he said he would check the dosage and walked away. I really want to fire him but if I do, that means I will have to get Dh to doctor appointments which would be very difficult. My jaw is clenching as I write this.

Thank you all for your support and prayers. We need them.

Brenda

Vitruvius

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.

CindyBum

https://alzconnected.org/discussion/comment/219613#Comment_219613

The nerve of that Dr! How dare he override the prescription of your DHs geriatric psych and his ridiculous rationale for doing it. What arrogance. I'm so sorry to hear about this. My jaw would be clenched right now too!

M1

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.

Quilting brings calm

I tried to get my mom onto Seroquel because the Alz nurse thought it would help. Mom’s psychiatric resident ( and his supervisor) refused - gave me the same reasons as your DH’s doctor. I was so angry. In our case, why go to a psychiatrist if they refuse to give the appropriate medications? Her PCP is capable of handling the anxiety and depression meds she is already on. So we cancelled the psychiatric clinic.

I’m really tired of the black box warnings. My mom is 86 years old. She doesn’t want any invasive procedures. Just do what you can for her current qualify of life and quit worrying about whether you might shorten it by a week or so. i

ThisLife

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.

housefinch

I’m just stunned reading this. Why isn’t that physician just calling and counseling you, the DPOA, and documenting in the chart that you verbalized an understanding a black box warning, the risks discussed, and that you agreed with continuing the medication after the discussion? I can’t understand how, in the big picture here, that doesn’t make the most sense. I am so sorry you are enduring this with your loved one.

ButterflyWings

@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.

M1

Brenda, Butterfly wings makes a very good point. I would sit down with the nursing director and ask to review his medication administration in the few days (maybe a week) before and after the recent incident. Maybe he wasn't dosed correctly and that could have contributed to the problem. I'd raise a real stink if that was the case.

Nowhere

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!

White Crane

I went to the MC this morning and he was sleeping. He woke up for awhile and used the bathroom but went right back to bed and was asleep almost immediately. One of the aides came in and told me the entire unit had gotten to bed late last night and that DH had gotten to bed especially late so he was probably tired. Hmm, maybe. I'm wondering it that is the case or if all the new medication is causing it. I stayed for awhile but when he didn't wake up, I left. I will go back tomorrow or Tuesday and talk to the administrator and DOR.

M1 and Butterfly Wings, thank you for suggesting I make sure he was getting all his medications before this latest incident. About the hospice evaluation, I really think it is too early but will keep that in mind especially if he is sleeping most of the time. I may also look into whether his former PCP does telemedicine visits. For right now, the nurses and aides all said he has been calm and has not tried to touch or grab anyone else. They also said they have residents with a lot worse behaviors who have not been asked to leave.

Nowhere, I didn't know Resperidone has a black box warning. I need to talk to that doctor.

As always, thank you all for your support. This forum is a life saver.

Brenda

M1

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.

elainechem

I have heard of people putting surveillance cameras in their loved one's rooms to keep an eye on things.