Terminal restlessness

I don't know if anyone has heard of this before or not, but I posted about this a while back, but I didn't know what it was called.  No one at the nursing home had ever heard of this. Hospice told me about it.  about a month before Daddy died, he could not be still. It was like he was driven to move. He couldn't be still. And he started hollering day and night at the top of his lungs. Well they did all kind of tests and couldn't find anything wrong with him . The nursing home got tired of him hollering and they told me that he needed to go to the phys hospital to get his medicines adjusted. They said that his alzheimers was getting worse. I didn't know any better so I sent him up there. He never got any better. He had just about stopped eating at the nursing home. When he got to the phys hospital, he quit eatting and they had to keep giving him IV fluids. I talked to his regular doctor and he told me that Daddy was dying. The phys hospital still didn't want to release him. They said that nothing was wrong with him. I think they just wanted to keep getting money. I made them release him after 12 days. Any way when I researched caring for the dying on the internet, the terminal restlessness popped up and that was exactly what Daddy was experienceing.

He had started to die  when he developed the terminal restlessness and I didn't know it. My point is: Nursing homes deal with death everyday. Why didn't they know about this? I asked two of Daddy's nurses today if they have ever heard of this and they said no. If I had known, I would have brought my Daddy home then, instead on making him go to the phys hospital. They made me and my sister feel so bad because Daddy was hollering and couldn't be still. They implied that he could stop if he wanted to because there was no physical reason for him to be hollering.

Anyway, I wanted to put this out there so nobody else would have to go through what my family did. I feel cheated out of the two weeks that he was at that hospital.

If your loved one starts hollering and can't be still , they can't help it and there is a name for it.

Thank you for sharing this in your time of grief.
Stacey

My condolences of your loss. Thank you for sharing. Because I refuse to let loved ones go into a nursing home, I bend over backwards. I live with my grandmother who has dementia taking are of her while I fight chemotherapy. I don't know how I do it, but it is surely the Grace of God. I used to work in a nursing home, I saw too much behind seens in there, and I refuse to put people in until I utterly kill myself trying to do it. I am so far handling it.

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