Row row row

toolbeltexpert

6/4 For the three days, she has asked, are we married?, I  don't remember that, Everything is moving fast, and it's like a dream. Are we really married?

Here is what I sang back 

Row row row your boat gently down the stream,  merrily merrily merrily life is but a dream.

Little did I know that things today are moving really quick, no signs of a uti, I am wondering if the depakote is causing things to speed up or causing the new delusions. We started that 2 weeks ago.

She keeps saying the voices in my head are telling me:

We are not married and you're just trying to take the house and steal money.

Worried more about the checking account, alot more. 

Before the depakote she was showing a change, especially the are we married. I guess I am more worried about the " voices in my head" thing.

I had to mow yesterday morning I quit about noon and I came in and the table chairs are all spread out, so I checked the outside camera and saw she tried to leave in the car, but the keys don't  work. Boy that was scary. 

So today I go up to get her up and she's counting money in her pocket book. She again was upset about me stealing, and being married she asked me my mother's name and then she asked my last name. 

She also has time traveled back to when she moved out of her family house, she didn't realize she had all this stuff. I just traveled back with her and it was ok.

I am gonna call the md and ask if I should stop the depakote. I hate trying to guess whether it's just progression or depakote.

I know the progression includes the things I am seeing it's just they seem like things are moving quicker. Wondering if anyone else has heard their lo say the " voices in my head thing." 

Ed1937

Stewart, I'm sorry things are like they are. Here is a looooong list of possible side effects. https://www.drugs.com/sfx/depakote-side-effects.html  

Quilting brings calm

It’s kind of a $&amp@ if you do, $&@) if you don’t thing with that medication. It’s meant to curb exactly the things she’s obsessing over, but it doesn’t work for sone people.  Or it works  early in the progress, not later.   Might need to go with Seroquel instead  

Jo C.

TBE: do not stop Depakote abruptly, unwanted effects including seizures can occur; it is usual to taper the drug - about 20 percent each week I think it is,  Your physician will be your guide.  Ed has given a good resource list which does list the side effects of Depakote which as you can see may possibly be the culprit in your wife's changes.

I know you wanted to use your friend who is a primary care MD and whose wife had dementia as the person managing your wife's dementia.

Yet; I do wonder if your wife would benefit from being seen by a dementia specialist who would be more in-depth knowledgeable in detail re treatment best suited to your wife.   Just a thought. 

We all want the best managment for our LOs so they do not suffer, that is a hard road to traverse as so much is up in the air so often and change is an absolute.  We can only do the best we can under the circumstances which you have been doing.

May relief for your wife be found soon.  Let us know how things are going; we will surely be thinking of you and her.

J.

Midwest Gal

My DH was on Lamictal for a short time for a possible seizure.  He became very paranoid, talked about self harm and was very unsteady on his feet.  With the neurologist's close contact he was taken off of it.  My DH is one of those people that has very little tolerance to medications but working closely with your doctors is the best route.  Might be the same with your gal.

Crushed

DW had mirrored self misidentifcation  which is a related psychosis

https://en.wikipedia.org/wiki/Mirrored-self_misidentification

M1

TBE I agree with what the others have said, with all of these meds you have to be watchful for worsening instead of amelioration.  If you think she's worse, you need to promptly report it, plan a taper of the med and try something else.  If it's really unmanageable at home, it may need to be done as an inpatient.

jmlarue

DH's geri-psych at the VA prescribed Seroquel for paranoia, delusions, hallucinations, and angry aggression that led to physical lashing out at me. The first few days on this drug were difficult. Due to the long holiday weekend, there was no one I could turn to for advice when it didn't seem to be doing anything except knocking DH out cold. Trying to wake him was like trying to wake an angry drunk. I think it was Bill on this forum who suggested splitting the dose into 3 smaller doses. On my own initiative, that's what I did and that was extremely helpful. If you do switch to Seroquel, you might consider the sage advice of "start low and go slow" that is too often overlooked by the professionals.

This is Day 6 on the Seroquel and here's what I'm seeing so far. The paranoia is easing, but there are still times when he thinks people are stealing and conspiring against him. He still has some anger, but is not ranting or taking swings at me. The hallucinations of groups of strangers being in the house have subsided, but he now repeatedly asks when our boys will be home - they been grown and gone for 20+ years. He is less alert when awake. He definitely appears sedated. His speech has further declined to being about 90% incomprehensible. He does not comprehend most of what I say to him. He remains continent and stable on his feet on the lower, more frequent dosage (thank God). 

This whole experience is convincing me that the behavioral changes can logically be blamed on the progression of dementia, but the subsequent rapid loss of functional abilities (like speaking, comprehension, ability to be distracted and redirected, or the ability to recognize that he is thirsty, hungry, or in discomfort) are all likely linked to the Seroquel. I don't like it but, frankly, there just aren't any better options for controlling psychotic behavior and all of those drugs become a trial and error situation. It also seems to require accepting that there will be trade offs. Can we accept the greater level of disability and cognitive decline in order to keep our LO and ourselves safe with less torment? We all need to reach our own conclusions on that.

toolbeltexpert

Just an update,  I spoke with the head nurse and also thru the portal. They did say NOT to stop the depakote, I wouldn't have done that on my own unless it created a life threatening thing. She has a wellness checkup scheduled in a few weeks and they said they would do a ua. They also said that they could start zyprexa or risperdal.. if she would take them. I am able so far to redirect pretty quickly and her aggression and anger are some better.  It's the new stuff that worry me. What if the voices tell her to do something bad?  Oh and she did lock the door yesterday while I was mowing, I am gonna have to get some spare keys made in case she does that and I don't have my keys.  I have heard so much about Seroquel that I wanted to ask if that was a possibility. I don't want to play doctor and don't want to come across the wrong way. 

I want to say the cameras video help me know what was going on before i walked into a hot mess. Once I saw what happened I gave it 10 minutes before I went to see her.   Thank you all. 

Scooterr

toolbelt just letting you know I've been thinking and praying for you and your DW. I know it's tough trying new med's. My DW was having psychotic episodes on a regular basis in April, that's when I became a fulltime caregiver. The doctor put her on Seroquel 25mg, 3X a day, within 2 weeks it got her back in control. So with the doctors help we slowly started cutting her back, and now she only takes 12.5mg at night. So far, so good. My DW never, never liked taking any kind of medication, so that was a relief. I try my best to keep my DW life the way she would live it, or as far as the dementia will let us. I guess I'm a lot like you trying new med's can be down right scary, you never know what your going to get. Hang in there my friend.

Joydean

Toolbelt I’m so sorry. I hope and pray the meds will help, either this one or a different one. Prayers for you and your wife.

Jo C.

Is the doctor going to start Risperdal or Zyprexa on top of the Depakote or will he taper her off the Depadkote and give it time to get out of her system before initiating the Seroquel?

Also; one can get a UA to rule out a UTI at home.  If you have a lab nearby or even a hospital nearby, you can get sterile cups for the urine.   I usually will ask for another sterile cup whenever I turn in a urine sample and store it carefully by itself so I have one available if needed.  Actually, I ask for two sterile cups and always get them with no problem.

Just a little concerned if one of  the antipsychotics will be initiated on top of the Depakote.   If not tapering the first drug off, it would be a good question to ask the doctor without going through the filter of the RN.  You can ask for the doctor to call you back as this is a complex and important circumstance that you want to have go right.

Let us know how it is going and so hope that improvement is soon seen.

J.

toolbeltexpert

Thanks scooterr and Joyce for your prayers, Jo C,  I didn't ask about starting the meds yet, I mentioned were the ones they said they could start. And if I could get them to give Seroquel or the others I would want to end the depakote. They would have to tell me how to do that. I am trying not rush this. But I certainly don't like the voices in my head thing. Last night when we went to bed she came and told me she was sorry about the morning when she told me about the voices and she doesn't believe them about me stealing and trying to get the house. We hugged and then she said is this a dream? I told her no and I will do anything to protect her and I love her. Thanks Jo C and  again everyone, I appreciate all your input.

Joydean

Toolbelt, last night sounds like a win! Glad for both of you! We have to hang on to those moments.

Buggsroo

Toolbelt, I am glad your wife apologized, that does make a difference to us caregivers. The strangest thing with my husband is that he apologizes to me for being the way he is. Before dementia, he never apologized to me if he did something I didn’t like. He would offer up a semi weird apology; telling me that I was sorry. I was so supposed to infer that it was he who was sorry. Weirdly enough there are tiny advantages to dementia, but they are minuscule. I still would prefer him the way he was, but will take what I can get.

toolbeltexpert

Your right it does feel good but at the same time it blows my mind that she remembered it. It has repeated today. She has said three or four times, is this a dream. So I'll just row the boat gently down the stream.

Jo C.

How poignant that apology must have been; she is a love and I imagine she must have been so prior to the onset of dementia.

TBE: at least you have your oars the water rowing gently down the stream rather than tossing the oars aside and letting the current dash your boat upon the banks.   You are doing the very best that can be and are unfailing in your loving care despite how exhausting and up in the air things can be.

It will be interesting to see which direction the doctor takes.  I am an experienced RN, but at times when something is really complex and important, I ask for the primary doctor to call me rather than going through the filter of the RN.   In multiple departments at various med centers, I did hear RNs in units communicating to various MDs information re patients. I was often stunned to hear how they did not communicate everything salient, omitting things needing to be sent and often, how they put their own biases re the patient into their communications.  Mostly, it was not sending salient information.  In my own departments, I had impressed upon my RN staff the importance of being thorough and never letting their bias about a patient or a family members personality to be inserted into the message.  

So hope that the change in the behavior to the better side of the ledger will stick.  Let us know how it is going, we look for you each day.

J.

Caring4two

My autistic son has been on most of the SSRIs and psychotropic meds over the last 25 years. It it a common psychiatric practice when switching to a new med to SLOWLY reduce the current med and SLOWLY introduce the new med at the same time. You never want to abruptly stop these meds. Weaning off one onto another takes about a month or so. It is not a fast process but so worth it if the new drug works better.

freelancer

My DH, with vascular dementia, has been on depakote since February for agitation/aggression and it has helped. His doctors (primary care and neurologist) use the valproic acid blood test to adjust the dosage. I requested the test be done when I thought he was becoming more agitated and it showed his level was below the target. His dosage was adjusted up from 1000 mg/day to 1500 mg. Then recently I became concerned that he is sleeping all day and not able to walk very far. After all labs, urine tests, CT, and MRI showed no cause, it turns out that depakote can cause "Parkinson-like" symptoms, so the dosage was reduced back to the original 1000 mg/day. At that time, the valproic acid test showed his level was higher than before (though still within the "normal" range.) If he stays on depakote, we may have to continue using the blood test to adjust the dosage. Or we may have to stop it as he's still sleepy some days and we had to get a walker to help him walk.

Another change was to spread out the pills, giving him one pill (500 mg) at midday rather than all at bedtime. He had been getting angry in the afternoons and this change prevents that. I initiated that change but confirmed with his doctor that it was okay to do.

toolbeltexpert

Freelancer thanks for your post. We are 2 and a half weeks into it.she takes 250 mg slow release 2 times a day. She might be gaining a little weight 2 pounds and a little swelling in her legs which may be due to inactivity or the depakote? What's making me concerned is the Voices in my head thing.  10 minutes ago she came to me and said, I don't want you to feel bad but I have to ask you something. Can I trust you? Are you going to steal my sewing machine and sell it? She said she trust me and she used my first name,when she said this. Her voices are telling her I can't be trusted. I don't want to rush to judge this, her demeanor is better but she does seem a little sedated. She talks alot about dreams but doesn't remember anything.  She has time traveled and my brothers and sisters are all new to her. I can see that any med has good points and bad. It is just hard separating the new changes,before we started the depakote I was seeing some signs of changes in the frequency of the are we married thing, which now is multiple times a day. I am over the loss of this. I just wonder if I will ever be able to grieve again.

Joydean

Toolbelt, I think we grieve a little every day, I can only say that for myself, I didn’t mean to sound like I know how anyone else feels! 

Prayers for you and your dear wife, this road gets bumper all the time! Way too many potholes and no repair crew!  Take care! 

toolbeltexpert

Joydean your right! We had a cat come up missing almost a year ago and dw still hasn't noticed. It is one of the cats that been around ten or more years. I searched and searched, I had to quit so as not to alert dw. But I grieved about that alone watching her not notice. I don't want to be a downer, I am over that. I think my mind just got made up about the depakote. Dw is now a complete basket case, completely overwhelmed by history. I am no longer recognized as dh, my family is completely new, my place in history is just gone. Two and a half weeks of depakote and I am gonna keep going till I get the taper plan, but this has hit like a ton of bricks and I can only hope it's the depakote.Just now I  needed something to help break her out from her helplessness I put in a dvd of her family 8 mm films and the back ground song that started it was Thru the years! One of the things dementia does to a song.

aod326

Hi.  You and your doctor know best, so please don't think I'm trying to sway you one way or the other. Just wanted to let you know DH's experience. He was put on Depakote for epilepsy in 2017, and Seroquel was added in 2020 for behavioral issues. He started v low with Seroquel - 25mg? - but was at 3000mg for a few months. Once on hospice, the Seroquel was gradually tapered to nothing, but he stayed on the Depakote. Every patient is different, but for him it all worked together well.

Good luck.

ImMaggieMae

I think that just as everyone with dementia is different, everyone reacts differently to drugs that try to control it. So many people on these forums do well with Seroquel, yet it didn’t help my husband at all, in fact things got worse. It took a week in the hospital to find one that helped. Don’t give up on finding something that will make a difference.