Terminal restlessness

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Regular Member

Date Joined Sep 2009
Total Posts : 172
   Posted 4/2/2010 9:00 PM (GMT -6)   
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.

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 4/3/2010 7:18 PM (GMT -6)   
Thanks for sharing
in my years as a geriatric nurse i have seen this a couple of times so yes i do know it exists
Some just are not fully educated about geriatrics and AD
Again i am so sorry for your loss
..Co Moderator for Crohns...Anxiety/Panic......Alzheimers

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Regular Member

Date Joined Feb 2010
Total Posts : 114
   Posted 4/3/2010 9:31 PM (GMT -6)   
Thank you for sharing this in your time of grief.

New Member

Date Joined Jul 2010
Total Posts : 1
   Posted 7/14/2010 8:43 AM (GMT -6)   
Hospice personnel seem to be well-versed on this subject, but I had never heard the term until last night. For two days now my mom has been up and down, sleeping very little, but not knowing what she wants to do. A hospice aide came and sat with her so that we could get some sleep but it has continued this morning. Medication seems to help very little at this point.
Our nurse does not seem to think Mom is quite at the official terminal restlessness stage yet, but I cannot imagine it getting worse. No hallucinations so far... this is a very sad thing to watch someone go through, and it is very debilitating on the entire family.
I am so sorry for your loss!

Veteran Member

Date Joined Dec 2008
Total Posts : 2386
   Posted 7/14/2010 1:21 PM (GMT -6)   
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.
Smurfy Shadow/Desirèe 
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Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 7/16/2010 8:36 PM (GMT -6)   
Not all Nursing Homes are bad
you really ned to check out the reports filed..incident reports ..neglect ect ..
prior to putting loved one in homes

i too worked for yrs in my own Retirement Home/ nursing home n everyone was treated with dignity ..respect n cared for by my staff

when mom got bad i looked after her at home
dad as well
i did not want others looking after them as i felt it was only proper to do it myself
i did hv help from Red Cross..
i was able to hv time away which is important imho
just my thoughts

                 Co Mod for... CROHNS..ANXIETY/ PANIC.....ALZHEIMERS
        DX.. a/p ....crohns ...fibro... pyoderma gangrenosum..seizures....deaf
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