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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?

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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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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 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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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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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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(((((((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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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,

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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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 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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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 2020
No, hospice is not a bad idea if she qualifies, I have no issues with it at all.
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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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