Ups and downs toward the end

ghphotog

My DW has been in MC for almost a year now. She is stage 7 and every few days she is almost unresponsive and I've thought "this is it" but she bounces back.
A few days ago when I was at the MC, I'm there twice daily to check on her, hold her hand, etc, the staff had laid her down in bed for an afternoon nap but she was unusually agitated, emotional, screaming, calling out for her mom, etc. Now she cries all the time/ The hospice nurse said it could be terminal agitation but she always seems to bounce back to her baseline.
It's very difficult to know as she could keep bouncing up and down for a long time.
Her almost constant tears now has me concerned.
Has anyone else seen this as part of terminal agitation?

PS, she is now on a twice daily dose of Lorazepam but I haven't seen it help her very much yet.

CindyBum

I have not personally, but my DW was a social worker. She told me she'd encounter people who cried all day, most often those with brain injuries or dementia. I see it on the Tam Cummings DBAT as well and it even has a name: pseudobulbar affect.

That must be so distressing for you. {{hugs}}

midge333

I would ask them to try some seroquel if she is not already on it. If she is already on it, I would ask to try a higher dose.

Quilting brings calm

ask the hospice nurse to get the doctor to order something stronger. She does not need to suffer when they have medications to choose from.

White Crane

This must be heartbreaking to watch. I'm so sorry. Sending hugs.

Brenda

midge333

Also it could be pain and she cannot verbalize what is bothering her. Ask the hospice nurse to try a dose of narcotic to see if it helps. It would be horrible to be in pain and not be able to tell anyone where it hurts.

SDianeL

I’m so sorry. It’s so hard to watch them suffer. I would definitely talk to the hospice nurse. There is no reason for her to be crying. 🙏💜

ImMaggieMae

https://alzconnected.org/discussion/comment/237452#Comment_237452

ghphotog, I don’t have any experience with the crying, but there are several discussions on the pseudobulbar affect on this forum. If you do a search you can get a lot of suggestions and see how other caregivers handled it with meds, etc. I hope you can find something that works.

ALCB

I'm so sorry this had to happen. Wishing you both the best. Sending hugs.

Jgirl57

ghphotog, so sorry to hear about this for you and your DW. I recall that Gothic Gremlins sister went through the awful time of crying and screaming .If I recall correctly it was very unsettling to all. Hopefully your hospice care team can help you through this terrible stage.

ghphotog

Hospice started her on .5mg of Lorazapam twice daily but it totally knocked her out all day to the point that we thought this was it. She would be semi-comatose to the point she couldn't eat or drink anything, her speech, what's left of it, would be slurred. The have backed off to once a day, given at night which seems to make her less wasted the next day.
The MC administrator told me yesterday that even though she is still eating and drinking, fed by hand, that because she is losing so much weight that it will probably be fairly soon, anytime to a several months possibly.