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Mom has had three bouts of not talking.


The first time I thought she was being bratty and I got annoyed. The second time her home health care nurse was here and she not only wasn’t speaking, but also her eyes wouldn’t track or blink much. We called 911 and the moron ER doctor (wouldn’t listen, prescripted the wrong meds for something different, etc) told me it was a seizure (she never had one before) and gave her seizure meds.


This morning she is doing it again and I lost it!!! Yelled at her, started shaking the bed screaming TALK TO ME!!!!! She is blinking and will nod her head to yes or no questions, but won’t speak and I swear I am having a nervous breakdown and my heart hurts.


I don’t know what the hell is going on! I feel emotionally and physically sick right now.


Anyone else have this happen?

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My Mom occasionally has similar episodes...we call them the “dementia stare”. Hers don’t last very long...just a 5 seconds maybe. It sounds like your Moms may last longer? The nurses at her NH acquainted me to this phenomenon, which evidently they see a lot. It was very disturbing to me the first time I saw it, but now I just keep talking to her “Hello, hello!” and she snaps back. I’ve gotten a little used to it and haven’t pursued it any further medically. You may get more info googling Dementia Stare.

This is is an awful disease that forces us just normal people into roles we were never trained for. It’s Very Scary especially when we have to stand toe to toe with medical professionals who we may disagree with, and try to do what’s right.
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Don't go away. This stuff is so difficult to deal with and there are people here who really do understand the frustration.
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I'm so sorry if I sounded like I was attacking you! I didn't mean that at all.

I certainly hope that you come back and let us know what is happening. ((((Hugs))))))
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Hugs to you, Anonymous. I think we've all been there. Please come back when you can.
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My opinion, it seemed u were attacking her. It really is hard to say what you mean in writing. The person can't hear the tone of your voice on facial expressions.

I was lucky, I have a daughter who works with Dementia/ALZ on a daily basis. I would ask her questions and call her over when Mom was in one of her paranoid moods. But to most people this journey and everything that goes with it is new. Reading her post, I would have said its part of the Dementia. My Moms eyes would glaze over and I thought, her Dementia. Tests show no stroke found.

Its sounds like she is alone in this.
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Anonymous885003, I am sending you a hug and positive vibes. This caregiving thing is overwhelming and exhausting alot of the time. It’s incredibly scary to see your loved one in declining health and not know what is going on.

There is no perfection in any of this. None. So, do not beat yourself up. You reacted the way you did. That’s in the past now. Breathe and know that it will all turn out fine.
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Did you miss the part where I said I'd been there done that? - I know fear and burnout and seemingly incompetent medical doctors, I also know that when you've reached the point where you react the way you described you are so sucked into the everyday crises that you are reacting emotionally instead of logically and you need more support and a time out, not as a punishment but as a very necessary pressure release.

This forum is a wonderful place for support and information, I can truly say that I would have never been able to make it without AgingCare.
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Thanks so much for the clarifications!

I really hope that you dont leave the forum. I understand why you think the doc was a moron!

So, you need to get back in touch with the neurologist. Can you call the ER and talk to one of the nurses and get the number of the doc who called you?

We care!!!!
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I am sorry that you feel that we do not care about you or your Mom or your situation.  We care a great deal!!  Sometimes we need to ask questions so that we can understand a situation better and to be able to offer appropriate suggestions, These questions are being asked to clarify your situation and not because we think that your actions are wrong.  We have all been frustrated and upset and angry sometime or another.  That is part of being a caregiver.

You have mentioned that you feel burned out.  I am wondering if you are experiencing "Compassion Fatigue".

According to the website:
http://www.compassionfatigue.org/

"Caring too much can hurt. When caregivers focus on others without practicing self-care, destructive behaviors can surface. Apathy, isolation, bottled up emotions and substance abuse head a long list of symptoms associated with the secondary traumatic stress disorder now labeled (as): Compassion Fatigue."

"Day in, day out, workers (either professional or family caregivers) struggle to function in care giving environments that constantly present heart wrenching, emotional challenges." 

"Accepting the presence of compassion fatigue in your life only serves to validate the fact that you are a deeply caring individual."

According to:
 https://dailycaring.com/how-to-cope-with-compassion-fatigue-8-tips-for-caregivers/

"Caregiving is an all-consuming responsibility, whether you’re doing hands-on personal care or managing care from a distance...That puts you at risk for compassion fatigue. Compassion fatigue can be a side effect of caring for someone in need. It causes physical and emotional exhaustion and reduces the ability to empathize."

I think that you are a VERY, VERY empathic and loving person who cares deeply about your Mom and wants only the best for her.  Part of giving your best to your Mom, is being able to take care of yourself.  Please research "Compassion Fatigue" on the internet as I think that might be what you are experiencing.

We love you and care about you very much.  {{{HUGS}}} and Prayers 🙏
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Gettingharder, You are taking everything completely wrong.

You shake a bed and the person on it gets shook, you can't deny that. You used the term screaming, TALK TO ME!

Everyone is trying to help you and you are just angry, you need to calm down. Of course you are stressed and scared. Who wouldn't be. But cussing all of us because we are trying to help shows that you are on burnout and something has to give.

I was there myself when I first came here, answers were not the support I was looking for, but when I calmed down and reread them, some of them made total sense and helped me to see some things from a different perspective. Try to do that, for your sake as well as your mom, this is a marathon not a sprint.
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shad250 Mar 2019
Maybe she is/was scared.
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You're sore, frightened and incredibly stressed. It's awful. We do, honestly, get it.

But you need help! And we need to understand what's happened. Please don't go.
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Can we go back to the beginning and start again?

Your mother had her first attack of this kind when?
The second time, with the nurse and the trip to ER, when?

Is anyone coming in to help you today?
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I think what everyone whose answered your post is trying to get you to see is that your reaction was out of control.

When the neuro called you should have taken the call. In that moment it was more important for you to talk with the neuro than to continue changing your mother.

You sound beyond overwhelmed. I urge you to find respite care for your mother while you figure out how to move forward.
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anonymous885003 Mar 2019
As I was in the middle of changing a diaherra blow out I couldn’t quite stop what I was doing.

Thanks everyone but as I apparently wrote it wrong for you to understand or I am oversensitive to how you all are basically telling me I suck.

I will refrain from this forum. I take incredible care of my mom and I don’t need stress from a place that I thought would be helpful.
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So what did the neurologist say?
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I do not blame you for being frightened, or for being driven beside yourself, but you need to step back and you need to stop that.

Once you've taken some deep breaths, think: how can any treatment of your mother that is not calm and sensible possibly help, no matter what the problem is?

I agree with Barb that what you describe does sound a lot like an absence seizure. I have come across a person with one happening myself, and his lack of response was bewildering. He seemed to be awake, he was sitting on my wall, he couldn't not have seen me - ?!!! It is difficult to understand that the person's brain is not functioning right when they look so normal otherwise. Then, some ten minutes later, he got up and walked off (while I was on the phone to the police) with no awareness at all of what had happened. It all got explained much later, long story.

The other thing to point out is that you dismissed the ER doctor's diagnosis at least in part because "she never had one before." Well! - *whatever* is going on, it hasn't happened before, has it? This is something new and different.

What you should do is get a pen and notebook. Note down the time you noticed what was happening. Is your mother recovered now, or is she still not herself?
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anonymous885003 Mar 2019
I didn’t dismiss the seizure diagnosis because the nurses called the on call neurologist to consult with the ER doc. I don’t think that made him happy. So I believe that. It was the dismissive and giving the COMPLETELY wrong uti meds that were not just off but way off enough for the hospital to call me and put another doctor on the phone with me to get them changed immediately.
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You are seriously burnt out if you are shaking the bed and screaming, I get that you're stressed but what you describe makes it sound like you are blaming her for doing this on purpose. (I may be guilty of melting down myself but that doesn't mean I can't recognize that this is not acceptable and call you out on it, yeah, BTDT and will live with the shame until I die)
Other than an absence seizure my thought is that it could be a TIA - did no one recommend continuing to follow this up? Has she had a CAT scan or MRI? You need to know exactly what you are dealing with so you can understand and plan appropriately.
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anonymous885003 Mar 2019
Did not touch my mom I shook the bed rails trying to get a response. She had a cat scan and mri. Neuro called I was changing mom and asked her to call back in 20 minutes and they never did. Er just said neuro would contact me. I have no way of calling back.
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Why do you think that the ER doc was a moron?

What do YOU think this is, if not an absence seizure? Sure sounds like it to me.

Do you think your mom is having strokes or TIAs? Is there any other symptom that she's having besides not talking and not tracking?

Was there a recommendation to follow up with a neurologist for further testing? Have you made an appointment?

Please don't yell at or shake your mother.
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anonymous885003 Mar 2019
I did not shake her. I shook the bed rails trying to get a response. I never touch her. I just kept saying talk to me.

She had an mri and no stroke.
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I think many of us think of a seizure as a Grand Mal Epileptic event, but in reality there are many types. Many much more subtle.

http://epilepsyontario.org/about-epilepsy/types-of-seizures/absence-seizures/

My daughter started to have absence seizures when she was 19.

Did you give Mum the prescription the ER doctor gave you?
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anonymous885003 Mar 2019
Yes she gets the meds twice a day.
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My aunt started having seizures in her 60s, just because she never had one before doesn't mean she isn't having them now.

Did you follow up with another doctor to get to the bottom of this?

Screaming and shaking her is probably not a good idea. You need to seek a specialist that can help her and help you understand her condition.
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anonymous885003 Mar 2019
I did not shake her. I shook the bedrails trying to get a response.
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