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One month ago, Mom, who lives with me, was walking (with a walker) and talking (mild/moderate dementia). Then she had what looked like a grand mal seizure but turned out to be conversion disorder. These episodes are sort of like panic attacks that look just like seizures. They usually happen when someone is touching or moving her legs/feet. She starts shaking and jerking, then screaming in terror (help me, hold me down, I can't breathe!), then full-on convulsions, holds her breath and turns blue. They're absolutely horrible to witness. Doctors prescribed Paxil and Ativan.


She's been in rehab for about 1.5 weeks now, and she is a mess. Almost always completely out of it, hallucinating nonstop, can rarely understand a word she says, barely eats, can't stand up, and incontinent. She can't even watch TV, just stares at imaginary things and talks to her stuffed dog that she thinks is alive. When she's somewhat lucid she says she's depressed.


The out-of-it-ness I think is mostly due to the Ativan (.5 mg 3x/day), but right now it's what's controlling the episodes/keeping her from being in constant fear of an episode. Not sure of the exact frequency of episodes, but she's having far fewer.


My hope was for her to come home, thinking that maybe being in familiar surroundings would help prevent the episodes and bring her back somewhat mentally. Now, though, the thought of her coming home is giving me terrible anxiety. If she stays this way - and I'm beginning to think she will - she'll need 24/7 care, punctuated by occasional "seizures", and I don't think I can handle it. But I feel guilty, don't want to hurt her, and can't stand to see her suffer.


I think it's probably time for long term care, but I feel SO terribly, horribly bad about it!

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Ten days in rehab is not very long for you to have got your head around what's happened so far, let alone what to do next. Take deep breaths.

What investigations were done to support this diagnosis?
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Jenelle83 Apr 2019
The second time she was admitted to the hospital in a week, they sent her to EEG video telemetry for 5 days. It showed disorganized patterns that correlated with her progressing dementia, but no seizure activity. Now that I've witnessed a number of these episodes from start to finish and aftermath, it's apparent that they're fear-related and not actually seizures.
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Jenelle, you are planning for your Mum to have 24/7 care, no need at all to feel bad about that. You are also recognizing your limited ability to provide 24/7 care.

The seizures sound terrifying to witness and I know I could not handle them either.

The Ativan dose is fairly low, have you talked to her doctor about the dose and whether or not they think it is causing her 'out-of-it-ness'?
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Jenelle83 Apr 2019
It seems like the doctor does think it's the Ativan (at least, she didn't tell me it wasn't when I said she's out of it from the Ativan). She was originally on .25 in the hospital, but the episodes were increasing in frequency, so they increased it to .50 just before they discharged her. From there it was a quick slide into delirium (thanks freqflyer - I was trying to think of that word).
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Jenelle83, it could be that your Mom is going through what is called delirium which happens to 80% of elders when they are moved to a hospital or rehab. It is part of anxiety due to the different sights and sounds of where they are staying. This even happens to young people, 20% get delirium after having surgery.

My own Mom had a major case of delirium which was down right scary to watch. Meds finally calmed her down. Once she was back at home she was fine, until her next visit to the hospital.
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Jenelle83 Apr 2019
She was in the same rehab last year after she broke her hip. She was pretty delirious the entire month she was there, and it took her a couple months to come mostly back to normal. This seems very different this time.
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I believe it's time to find her a long-term care facility. Her care needs are only going to increase as her dementia gets worse. You cannot know all the triggers - and she may be triggered even if she were to return to your home.

I think you feel bad about what has happened to mother overall and not specifically to not wanting her to come back and live in your home. Try to look at it from the perspective of her care needs. Changing your mind is a good thing in this case because she needs professional care.
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I think you need to place her in LTC. 24/7 is very overwhelming and you have a daughter you need to consider. This is the time you should be able to enjoy her accomplishments. You need to be there for her.

I would talk to the Social Worker now. Tell her you are not able to care for Mom anymore. That you are looking at her transferring to a LTC facility once her rehab is done. They may help you with the Medicaid application.

Where I live our rehabs have LTC attached. Transferring entails a bed being available. With our facilities, if possible, people remain in rehab section until a bed is available in the LTC section.
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