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Those of you who know me from the forum know that my mother is difficult, to say the least......93 and living in the Memory Care part of the ALF she's lived at since 2015. She started a new drug, Cymbalta, a few weeks ago for the neuropathy pain in her legs. I was very hesitant to try this medication, and so was her PA, due to her history of bad reactions and side effects in general. Cymbalta, however, doesn't have a bunch of side effects that relate directly to dementia, so yeah, okay, let's give it a whirl.


Her legs are feeling better, she's sleeping like a baby (which likely has nothing to do with this medication) and her mood seems improved. A win win.


Until about 9 days in when the mass confusion begins. She starts calling my phone multiple times while I'm at work asking when I'll be picking her up or how else will she get to my house? She's agitated, confused, leaving multiple messages & saying she's getting the wrong number.


I talk her off the ledge, you're not coming over mom, nothing going on over here, yada yada. Next day, same thing. Calls me up hollering about 'I'm having a FIT because it's snowing! HOW ON EARTH will I get to your house?'


I thought maybe she had a UTI. Nope, the UA was negative. The only likely culprit, the Cymbalta. Her PA, meanwhile, is on vacation (naturally). I had the medicine discontinued; she seemed to get better after it left her system.


Then 2 nights ago, same thing! She wants my 'opinion' on something. Do I think she should spend the night in the place she's in? I'm like WHAT? She says she's never slept there before, but needs to get 'out of my hair' so maybe she should stay put. What's my opinion on the matter?


She wound up yelling at me that WHERE AM I GOING TO GO, NOBODY WANTS ME, etc etc! I have to sleep here, I guess, she kept saying.


Tonight, I call her earlier in the evening and she's seriously angry at me. I ask her if she needs anything, NO THANK YOU, I'll use what I have, is her response. She had a terrible night last night, dreamed all about her dead mother & brother all night long. Her mood is 100% foul and she's calling me by my first name, which she NEVER does. Off..........she's just totally OFF in general; angry, out of it, mad at ME for something I haven't done. Makes no real sense, but nothing about dementia does make sense, I know that.


Naturally I will be speaking to the PA who's back in town tomorrow. Now I'm wondering if she's had a stroke or a TIA. Or if her dementia has just worsened and this is her 'new normal' which I REALLY hope isn't the case. She's hard enough to deal with on a good day, never mind having THIS thrown in to the mix; insisting she doesn't live at the ALF she's lived at the past 5 years.


This doesn't fit into any dementia 'mold' except the 'I want to go home' mold, but it's not quite the same formula. Similar enough, I guess. Oh, she was dx in 2016 with 'progressive dementia' and it's been steadily worsening, but nothing too bad. She's at the point where she doesn't know what day it is, but that's been going on for 9 months at least.


Has anyone had experiences like this? Was it due to meds? Did the behavior improve? She's been off the meds since Tuesday (one week tomorrow; the half life is 2.5 days; should be well OUT of her by now). Does this sound more like a TIA or a stroke to you? It may be a coincidence that the new behaviors coincided with the new meds...but I am leery of 'coincidences'.


Just wondering if anyone had a similar experience with Cymbalta & dementia, or any light to shed on this situation?

Lealonnie,

I was just thinking about your state, Colorado. It is a beautiful state! I heard a report on NPR stating how some of the elderly there are experiencing good results from CBD products for various issues. Has that trickled down to treatment in facilities for the elderly too? Has your mom ever tried it? Seems like there are few side effects.
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lealonnie1 Feb 25, 2020
No she hasn't. She was eating pot chocolate sometimes and then it made her sooooooo dizzy so away those went too.
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I just googled up Cymbalta, and Dementia. I do believe you will find your answer.
I'm sorry your going through this,
Prayers, she snaps out of the withdrawal anger soon.
Website was Cymbalta withdrawal/slideshow
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lealonnie1 Feb 24, 2020
??
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I’m sorry lealonnie you are going through all this. At least you know it is the medication. I hope the confusion doesn’t get too bad. I am so sorry lealonnie. You have all of our support. Big hugs to you!!
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Lealonnie,

I have to say that there is never a dull moment with your mom, right? She’s one of a kind. Sounds like they broke the mold with her, huh? She definitely keeps you on your toes. Nothing is predictable!

Hang in there. You know that you have our support 💗.
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lealonnie1 Feb 24, 2020
Hopefully they DID break the mold! Thanks for your ongoing support, dear lady, you are the best!
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Update: Well, it's now one week since my mother is back on the Cymbalta, a 20 mg lower dose.

It was not a 'decline in dementia' last time that had her confused at all.........it was the medication.

Today is she is back to being confused, saying she is being taken out to a movie tonight with the mini bus at the ALF! And she's started eating dinner again, saying she has 'always eaten 3 meals a day' which is NOT true. Only since being on Cymbalta has she been eating dinner! When off of it, she went back to overeating lunch saying she was too full for dinner, etc.

My theory was right all along. So, she says the pain in her legs is much better & she's sleeping very well once again.

As long as the confusion doesn't get too out of hand, I guess I leave her on the medication, now that the theory has been proven, once and for all.

Unreal, isn't it?

Thanks, by the way, for everyone's support! You guys are the best.
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Lealonnie,

Your mom sounds super sensitive to medication. It can happen to some people. The same with allergies.
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lealonnie1 Feb 23, 2020
She is super sensitive, which is why I didn't want to put her on the damn Cymbalta to begin with. But when the PA hears incessantly about 'such horrible leg pain' and my mother is already on RX painkillers, she is at wits end and wants to try something new. The next time she has a suggestion I am going to NIX it, whatever it is! The 'sensitivity' issue just amps up an already difficult situation to an impossible one! God forbid she starts getting super aggressive with the dementia & need some anti psychotics, huh?
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How long was she on it the first time around? I got WD after only two months on Lexapro. I did a very fast taper because I was sick of how the drug itself was making me feel. I used some Xanax for two days to soften the breakthrough WD, and I was okay. Obviously your mom needs to take her doctor’s advice, but it seems the med may be the culprit.

I’m sorry you’re going through this, has the doctor suggested anything else for the leg pain? Is it nerve related paid? Maybe Gabapentin would be a better option?
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lealonnie1 Feb 23, 2020
She only took 30 mg of Cymbalta for 2 weeks (which is like a 1/4 dose!!) and then I took her off b/c she was VERY confused! A couple days after going off, BOOM, she turned against me screaming & hollering, not wanting to see me, etc. Foul language (well, foulER than usual) and just god-awful behavior in general.

But, it WAS helping a LOT with the neuro pain in her legs which is chronic. She also insisted it made her 'sleep like a baby.'

So she's back on 20 mg now for the past 6 days.

She's on Gabapentin (600 mgs) which does nothing for her.

She says the leg pain is horrible, but tells the neuro her legs are 'dead' to which he replies, okaaaaaaaaaay, how do you fix dead? You don't.

So all these treatments for 'dead' legs doesn't make sense. But hey, I've stopped trying to make sense of this chit-show quite a while ago. She has HIDEOUS reactions to 95% of all meds she's been given. #Truth.

Now for the good news: I called the nurse at the MC Alf. She's doing MUCH better today, only slightly nauseous once, no throwing up, holding down all her food. So far.

Must have been a virus I guess.

Looks like no trip to the ER tomorrow. Yet. Or, for this event. Or this moment.

Until next time.

Sigh. Phew.

Doc is SUPPOSED to see her tomorrow. I plan to have a few words with this boneheaded group if they don't show up! I mean, COME ON!

Anyway, the jury is still out with the Cymbalta at the new lowered 20 mg. dose which is like 1/8 of a dose. If SHE thinks it helps her, that's half the battle right there.
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Lea, I am so sorry to see this, and I missed your original post on the 17th. You must be exhausted.

It's so hard to tell what is what sometimes. And you are correct that it's really hard to be objective when we are dealing with our own mothers. I think you did the right thing by distancing yourself from the rages. If there is a medical emergency the facility will call you.

I just want to throw something in here- and it may or may not apply. Over the last six months I tried a couple different antidepressants. None of them worked out, but that's the point I'm getting to. These drugs, SSRI's and SNRI can make a person feel like $*&%! In my experience stomach issues and nausea were deal breakers. My doctor explained there are more serotonin receptors in the stomach than brain so GI side effects are very common. Even on low dose Lexapro I couldn't take it. I could barely function.

It's *possible* your mom is experiencing side effects. Even with slight mood elevation (which I got with the Lexapro) the side effects were too much and a deal breaker. So your mom may have gotten a mood boost but just can't deal with the side effects.

Plus going off the meds causes issues, brain zaps, etc. TBH because of my own bad experiences with these meds I'm not in favor of putting older frail people on these meds who might not be able to explain and deal with the horrible side effects that some people have, instead it might just come off as agitation.

Or it could be something else entirely. I hope you get some answers soon, and your mom starts feeling better.

{{{{{Lea}}}}}
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lealonnie1 Feb 23, 2020
Yep.........it could def. be the Cymbalta giving her stomach issues. It did not do that the first round a couple weeks ago, though, so that's what is throwing us all off. I KNOW she was having withdrawal symptoms coming off the stuff though, I'm 100% certain of it! Now she's back on a lower dose and acting CONFUSED again, which I expected.............ugh, just too much. The goal here was PAIN reduction in her legs, not a mood enhancer.

I called her this morning; she said she felt okay, hadn't thrown up anymore last night or this morning, at least yet. Fingers crossed. If she throws up again, I guess the first thing to do is take her back OFF the damned Cymbalta and STAY off, based on what you've said. What do you think?
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(((((((lea)))))) take a break when you can. This emotional roller coaster ride is very stressful. We know the disease progresses whether we see it or not. Hope the lower dose of Cymbalta works for her. In the last months nothing worked to help mother's mood. It was hard to see.
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(((((((HUGS)))))))) Lea!
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Is hospice a bad idea? Your mom sounds like she's racing downhill.... hate to say it.
Besides, if she rallies, you can remove her easily.
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lealonnie1 Feb 23, 2020
No, hospice is not a bad idea if she qualifies, I have no issues with it at all.
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Lealonnie hopefully the hospital will have some answers about your mom. I don’t blame you for not speaking to her for a few days. If it’s not one thing it’s another without much of a “breather “ in between. Hugs to you!!
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Lealonnie,

I am sorry about your mom. That would be hard to see. I guess she can’t tolerate certain drugs. Sad.

Gallstones are very painful. My daddy had them.
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Mom's anger got to the point of insanity, and I didn't speak to her for a couple of days. She's been back on a lower dose of Cymbalta for a few days now and has mellowed out.........

Now she started vomiting last night! Again this afternoon and is very confused and lethargic, hard to transfer too. Very fatigued. We went by today and I just don't know. No fever, may be a bug. They're giving her Zofran for nausea and lots of liquids. The on call doc had an emergency so won't be seeing her! Ugh. Both DH and I work all day tomorrow so will take her to the hospital on Monday if no improvement. Of course, the ambulance will take her sooner if she worsens. This is coming on the heels of a bad GERD episode and regurgitation for which Prilosec was upped by the doc.

I don't know if these 2 are related. The nurse at the MC was suggesting hospice.

It's been one thing after another for so long now that I can't think straight. It's tough to see her like this, spiraling downhill. I guess the best thing is to get her to the hospital on Monday if no improvement.....we had a lady at the MC where I work who started vomiting out of the blue after eating. Turned out to be gallstones. They could not operate bc of her age, and she died 3 days later.
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Dehydration, maybe?

It is time to start trying some different anti-anxiety dosages or even different meds. An inpatient Geri psych evaluation?

My mom went through this a number of times. She would just get settled down, then whammy another episode. Something needs to be reevaluated.
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lealonnie1 Feb 19, 2020
All her tests are negative, as usual. I personally believe it's the Cymbalta that changed something in her brain and made her confused, and now, being off of it, she's withdrawing and feeling anger, even though she was on it a short time and in a small dosage. She has very intense side effect with most drugs she's put on, which is why we don't generally put her on drugs. But now, with a lower dose of Cymbalta, we're hoping the pros outweigh the cons.
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Lea, is there a geriatric psychiatrist who visits the AL? It might be worth it to get another opinion about her sudden behavioral changes.

I do know that Vascular Dementia (as opposed to Alzheimer's) tends to have sudden deep declines and along plateaus, rather than slow, steady progression. But this sounds like more than just dementia; any type of infection, not just UTIs can cause confusion, as can lack of oxygen and imbalance in electrolytes. Just some things to check out.

I'm so sorry that you're going through yet another hellish week. Good call on letting her calls go to VM! ((((((((Hugs))))))))).
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lealonnie1 Feb 19, 2020
No geri psychiatrist who visits her MC, unfortunately. I personally believe it's the Cymbalta which works on the brain and serotonin levels that altered her behavior and made her confused; now, being off of it, she's withdrawing in spite of being on low dose for a short time. See above what I said to Glad. She was SO angry at me last night, said she did not want us to come by today to visit!! I said fine Mom, call me if you'd like company. I will not call her tonight and give the meds a chance to kick in again.
I can second guess myself into the grave here, obviously, which I tend to do. But I think the pros of the med outweigh the cons. If confusion is the side effect but the pro is a lot less leg pain and a MUCH better frame of mind, it sounds like a win.

My DD is a hospital RN who's been across the country traveling. She called last night & felt certain her gma is withdrawing from Cymbalta and that's why she's so angry. She's seen it before with her patients, even on a low dose; it has a bad reputation for w/d symptoms. And again, my mother is the queen of 'worst case scenarios'.

All guesswork of course, but that's what seems to make the best sense. The PA feels that the dose was too low and she was on it for too short a time for 'withdrawal' to be a factor. I disagree.
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Oh lealonnie, I am so sorry!!! I just found your post just now!! Gosh, that’s terrible that your mom is getting worse with the dementia. Where is Barbbrooklyn? She always has some really sound advice. It does sound like the medication triggered her episode. I hope you can get some answers soon!! I know my mother n law who right before she had full blown dementia was on some anxiety medication that caused her to see people in her bedroom at night when she would start to doze off. She even said she saw children with no legs!! Medicine can do strange things. It helps one thing and then has a side effect. I am so sorry. I know this must be so difficult for you.
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My MIL (never what one would call warm and cuddly) had a UTI last fall, which then combined with pneumonia, landed her in the ER and a 6 weeks stay in a NH. We watched her going downhill day after day.

She's back home, but miserable, anxiety ridden and mean, to boot. She has kicked out of her 'sight' myself, my BIL, a couple of neighbors who were willing to help her out. She now has about 3 people who she can stand.

My DH is flabbergasted at the things she says and does. But the UTI triggered the already existing dementia and made it much worse. She is fixated on the 'boys' putting her in a NH, which is not going to happen. So she's mad at them when they come to visit b/c she feels they are trying to force her out of her house.

No, she is not safe there, alone, but she is not bad enough to be considered unable to make her own decisions, and my DH as her POA wouldn't NEVER pull that lever. She will have in home care to the day she dies to avoid having to live anywhere but her home.

At least she isn't calling constantly, like she used to. I think she calls her daughter, but not my DH. It's just sad. I don't know what to do to help him.

we want to blame the UTI, but it's the dementia and there is nothing to do with that but not let it get it under your skin.

I'm sorry for what you're going through.
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NeedHelpWithMom Feb 18, 2020
That’s the toughest spot to be in, not bad enough to be incompetent but not exactly completely independent either so they are hanging in limbo!

What a tough spot for your family to be in. Such a shame. Their delusional thinking is enough to drive anyone batty!
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Lealonnie,

You and your mom are in my prayers. I am glad the doctor called you back. It’s all trial and error and so unnerving trying to figure out the right path.
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I spoke with the PA earlier; she thinks my mother has just declined with the dementia........JoAnn......yep, it can def. happen overnight! I see it all the time where I work yet I'm TOO CLOSE to this situation with mom to do anything but FEEL it, you know? I can't take her phone away......it's her last link to the 'outside world' and her nieces in NY & friends in FL. I will, however, let her calls go to VOICEMAIL and check them/respond to the ones that I want/need to. This won't get 'better', so I need a few plans in place to protect myself from her wrath. If she starts calling 911, THEN the phone goes bye-bye.

So she's putting her back on Cymbalta but a lower dose this time, and checking in with me next week re: symptoms & confusion. The PA says it def. could have been a TIA but even if it was, there's nothing to do about it. The Cymbalta was making her feel better & act more civilized in general, so I am hoping it all works out.

Def. no UTI in play here; urine is clear and she's good on that end. Not prone to them normally anyhow.
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Calico has a good idea. Test again for UTI.

Maybe its the next stage. Things can happen overnight, literally. The Nurses I worked for call it an episode. PA may be able to give her a med for it. In the meantime, I would lose the phone. The constant calls would get to me especially if I am working. Tel, the head Nurse and staff so they don't go looking for it. In my daughters facility, the have to write up a report only to find a family member took the phone.
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Do you think it would be worth retesting for a UTI? Maybe it just didn't get picked up on with the first test?

I"m sorry, it sounds like a real pickle you are in :(
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Lealonnie,

I didn’t deal with dementia with my mom so I don’t have a clue but I just wanted to say how sorry I am that you are dealing with this.

I hope her doctor will have answers for you so she can get some help and you can be at peace. Hugs!
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I'm sorry you going through that. Sounds very difficult. I agree about speaking to the PA. I hope you find an answer.
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