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About 3 years ago dod started with memory problems (her alcohol consumption didn’t help) - now there’s no denying Dementia. But lately, the last couple weeks, she seems quite lucid and knows she’s losing her mind (it’s horrible to watch) ! Most conversations are “I need help - my brain doesn’t work !” “No one understands ! I can’t think straight!” I’m losing my mind “
(Dod’s 91 and lives in MC) This morning she called me 7 times before I woke up and turned on my phone
(about every 2 minutes). She’s saying she’s afraid to leave her room because the people ‘out there’ will know she’s crazy. She feels whatever’s wrong in her head is fatal and worries her cats won’t be taken care of.
It’s 4:30 and we’ve talked 9 times on the phone and twice in person at her window We’re both exhausted


Has anyone seen dementia ‘turn’ like this ?
My mother had ‘moments of lucidity’ with her vascular dementia and FIL with Lewy-Bodies didn’t even have that - just thought everyone around him was crazy.


I'm open to suggestions. thanks

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Based on how quickly this turned I would most definitely have her tested for UTI as well as the possibility of another underlying infection. That’s not to say this couldn’t very easily involve medication, new or not or of course simply advancement of her dementia. But I would highly recommend starting with a urine test and maybe some bloodwork.
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Kitty1 Jun 2020
Yes - dod’s been tested for UTI
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So, if dod has been a heavy drinker and has alcohol related dementia, then she may be displaying symptoms directly related to THIS type of dementia which is treated differently. Below is a link to the various types of alcoholic dementia so you can read about it:

https://www.alzheimers.org.uk/about-dementia/types-dementia/alcoholic-dementia

My mother has moderate vascular dementia and has been quite lucid for the past 3 weeks, since the weather has improved and warmed up, in fact. Then she turned on a dime the other day and bit my head off, in her typical style of ugly behavior. So yeah, dementia sufferers can and DO 'turn' on a dime quite often.

Medications can and do contribute to behavioral issues as well. Sunnygirl mentions how well her mother does with Cymbalta. My mother did SO poorly for 6 weeks with Cymbalta, it was mind boggling. She was pretty much hallucinating and calling me constantly, asking when I was picking her up? She lives in MC Assisted Living since 2014. So if your dod has had a NEW medication prescribed for her recently, I'd be highly suspect of it FIRST and foremost. Also, if she hasn't been tested for a UTI, I'd ask to have that done as well.

As far as the phone calls go, I don't see how they're helping either one of you, really. If you take dozens and dozens of irrational phone calls per day from her and wind up stressed out & traumatized as a result, how does that help you? You haven't fixed what's broken with her, either, by taking all of these senseless phone calls, so I suggest letting all of them go to voice mail. Select one time of day to call her to check in, and that's it. Call the nurse at the ALF to see how she's doing to get a REAL feel for things, if you'd like. My mother tells me the most incredibly absurd stories about what's 'going on' in her life at the ALF; but when I call to 'fact check', it's all a lie. My mother thrives on drama, even with moderate dementia. For instance, a new man moved in and knocked on her door b/c he needed the aide who was helping my mother. Well, my mother had a gigantic meltdown and told me she wanted a GUN to shoot herself b/c 'everyone picks on her' all the time. Me listening to that level of nonsense doesn't help me OR her. You (and I) can get the doctor involved for an evaluation, but again, be careful of the new medications when they are prescribed. Especially those that work on the brain like SSRIs for instance. When dementia is involved, that type of medication can cause all sorts of erratic behavior changes; I've seen it first hand.

Wishing you the best of luck!
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Bella7 Jun 2020
So I am wondering if my moms recent med change is causing all of her bad symptoms. The lockdown has benn h*ll!! A fall took her to ER so that put her on isolation for 14 days, during that time her dementia worsened, severe aggression, paranoia, etc. etc. they put her on Xanax, increased Zoloft to 125, escalated to use Haldol and Ativan if needed. Nothing helps, it’s all worse. Vascular dementia is the suspected diagnosis, so SSRI’s not good for this? Finally, she got admitted to a behavioral health hospital to hopefully get the help she needs.
My mom talks like your mom does Kitty1
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Kitty, I'd listen to the doctor about how to get her meds adjusted. Sometimes, it takes a while. Sometimes, they add another med to the anxiety/depression med. My LO also took a small dose of Seroquel at night to help her sleep. She did that for years, but, doesn't need it now. We were fortunate in that the Cymbalta helped my LO stop crying, worrying and biting her nails to the nub pretty quickly. It was amazing. But, she still would repeat things a lot. There are some symptoms that are just a part of dementia. I tried to just accept it.

I sometimes would count each time she would repeat something and when it got to a certain number, I would win a prize. (In my mind.) Anything to keep patient. Often in the ER when waiting for a doctor, we would sit for hours......and she would say, "I love you." and I'd say, "I love you, too!" Then in 15 seconds, she'd repeat it, then, I'd repeat it. I used to laugh wondering what the people in the next cubicle were thinking. lol This would go on for hours. Eventually, it stopped though. She can no longer speak.

I'd try to plan this for the long haul. Don't burn out. I did that my first year and it was terrible for my physical health. Be gentle with yourself, as well as her.
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Kitty1 Jun 2020
So funny ! My mother, with vascular dementia, did the same ! “I love you” And if you didn’t answer back she’d repeat Sometimes I would count and try to say “I love you” to her first ! Loved those games !
(Her other one was “isn’t it beautiful out ?” Didn’t matter if it was gloomy and drizzling.) My mother was Always ‘a little dingy but sweet’ (my x said that once - so true). Dod was intelligent with a quick humor
Wish dod had that repeat line
Dod usually starts with ‘has the world turned upside down or me’. ‘I feel I’m losing my mind’ (me too)
‘I’m so scared ! Aren’t you scared ?!?’
When I respond I can tell she’s not listening (sometimes she’s just hysterical, sometimes she’s sobbing). I talk in a ‘soothing’ voice, tell her to take a deep breath with me, ask her simple questions ’what are you afraid of’, when she ask “what am I to do ?”
Depending on the time of day, I reply “get out of your room” “lay down and nap” “time for exercise”
It’s gotten to the point that I can read, play cards etc while listening and talking to her....lot of repetition

Wish it was a simple ‘I love you’
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I have such a hard time not answering the phone to her
I am the only person she calls (it’s 1:30 and she called me 11 times). I’ve never seen her like this - and I’ve been her advocate for 5 years. She is inconsolable

but you’re right - I’m not helping - only making myself as miserable as she is. A psychiatric hospital has been brought up. I was horrified ! But now I’m feeling like it’s dod or me
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I am so sorry you going through this.  My husband has ALZ and other medical issues.  I had him try coconut oil (Extra Virgin) for a few years.  Then I switch him to CBD Oil.  This has help him when his mind gets real fussy and not know what is going on,  It also helps with anxiety too also with delusions.  I hope the new meds work for you.  Hang in there.  Your doing great!!

God Bless you!!!
:):)
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I hope they are able to get her meds adjusted. They really helped my LO. With her, there was still a lot of repeating though. I think there are some things that dementia brings that are unavoidable. It helps to keep in mind that the repeating is likely due to memory loss and not insistence. For me, I had to limit the calls. She likely will not recall whether you speak or not. It’s difficult to adjust to being ok with that, but, I’d try.

Where is she staying? Is she able to make the calls herself? I’d limit the calls and visits. You need to pace yourself. No matter what you do, she’ll likely forget it, so don’t burn out.

I used to comfort my LO by telling her that I had fixed everything....made a call, filed the form, sent a letter, etc. so we could celebrate that all was well, but, I’d have to repeat it over and over, because she’d forget. This is how dementia works. The repeating and insisting phase often fades....then it’s something else....like incontinence, forgetting how to feed self, etc, There seems to be progression whether gradually or in steps, depending on what is causing the dementia.

I also tried to compliment my LO to keep up her confidence. I’d say, no one has a perfect bladder or memory isn’t always perfect, but, you are getting great care here and it’ll be okay...you have people who love you and need you...hang in there. This seemed to help her feel better, but she still needed her meds to help with worrying, crying and obsessing.
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