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Husband is in a nursing/rehab facility after having two very bad seizures at home. Even though he was on hospice, I elected to have him taken to the ER because he was in significant pain. They took him off hospice, admitted him, and tested his brain for bleeds, tumors, etc. They found nothing so attributed the seizures to normal progression of Parkinson’s. Dr. lectured me about not seeking treatment for him if he is on Hospice, to accept he is terminal, and to just keep him at home if this happens again. Poor bedside manners but I understand his point. Right now, husband is receiving rehab to walk/transfer like he could before the seizures. If he is bed bound, I cannot care for him alone, and I’ve told him this many times. He says he will go to a facility when that happens but judging from his reaction to the facility now, I know it will be a battle. How do you know when to just let them lie there in pain and not call for paramedics? Should I have stepped back and not called 911? I know he is terminal but I could not stand by and watch the awful seizure and hear him crying out in pain. Was I wrong to call for paramedics?

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My late husband developed seizures about a year after having a massive stroke at the age of 48, and they continued throughout the rest of his life, though were for the most part controlled by 3 different seizure medications.
And when he went under hospice care the last 22 months of his life he continued on those seizure medications, so make sure you talk to hospice about getting your husband on some of the seizure medications.
The closer my husband came to dying his seizures became more regular, and eventually my husband could no longer swallow his medications, so hospice gave him some kind of liquid medication that they hoped would help with his seizures, but he still continued to have them until he finally went unconscious.
Don't second guess what you did. You did what you thought was best at the time.
Please get your husband back under hospice care and just make sure that they're supplying your husband with some seizure medications.
I'm sorry you're going through this. I know it's very hard, but know that you're doing a great job. So hang in there.
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Reply to funkygrandma59
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Seizures are a common occurance when someone is dying and especially if Dementia is involved. I just read where its called ictal pain and very rare.

Ictal pain includes:

Paresthesia, or a tingling or "pins and needles" sensation
Thermal sensations, or feeling hot or cold in a body part
Burning or stabbing sensations, but this is rare 
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Reply to JoAnn29
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I should add that I kind of panicked when the seizures started. His crying out in pain was heartbreaking. I dialed 911 without calling hospice 800 number. My fault for not calling them first. While waiting for the paramedics, I did call Hospice. They told me I should have called them first. But in the heat of the moment I completely forgot about them. They contacted the hospital he went to and coordinated canceling Hospice with Medicare. The next day I got a call from the company who provides his wheelchair and bed monitor asking if they needed to pick up the equipment. So I know the word got out to pull Hospice support. Although the nurse and social worker are still calling to see if they can help me. Such nice people. I can’t fault them since I’m the one who didn’t follow protocol.
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Reply to Penguina
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Anxietynacy Jul 5, 2024
Not your fault at all penguina, your naturally very very stressed, and vonerable, which was so wrong on the doctor to lecture you on that .

Who thinks right in this situation. Please don't blame yourself in any of this, you are doing the best you can!

I'm so sorry
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You called because you needed help and are not trained in what to expect or what to do, I certainly don't blame you at all (and shame on that doctor for lecturing you about it). If you are having a crisis at home at the very least your hospice provider should have a help line so you can get immediate support plus a nurse visit within a short window of time, if they can't provide that what good are they? I have a feeling this is the kind of hospice provider that will also leave you on your own when your dear husband is actively dying, and nobody should have to deal with such things on their own. If you can't find a more compassionate, full service provider it may be that it's time to a move to a more supportive environment.
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Reply to cwillie
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Anxietynacy Jul 5, 2024
Your absolutely right CW , she needs more support, not a lecture.😔
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Penguina, if your husband is on hospice they should be keeping his pain level down with morphine?

That's one of the points of hopise if to transition to death pain free.

I was doing a little caregiving for someone once , I was young, hospice wasn't called yet. Her daughter was handling things very well. I was only going a few hours to relieve the daughter, and let her get out.

She had a seizure when I was there. I called the daughter we discussed it. She decided to not call 911 because they are only going to prolong the invetable at the hospital. Her mom was ready to go and it was just the progression of that, her daughter understood that.

You never let someone just lie there in pain, that's what hospice is for, but calling 911 and ER visit are just going to prolong his pain.

I'm so sorry, this has to be torcher watching your husband go. Keep us posted
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