Near constant hallucinations and agitation- end stage alz

ran2much

Hi friends in the same boat,

Mom is in the 7th stage and was accepted into hospice. For several years, her agitation and aggressive outbursts on top of the usual Alz decline have been her norm. She is not pleasantly demented. She gradually lost continence, the ability to walk, sit, and converse. She can’t feed herself. She broke a hip in December and did not relearn to walk even after surgical repair. She now almost always is seeing and talking about things we don’t see and is very agitated. She lives with us with the best  support my husband, 7 year old and sisters that come monthly from far away can provide. We have a caregiver a couple times a week. She can no longer read, write, hold a child’s paint brush, color or do anything. We got a fidget blanket for her, but she doesn’t understand it. She is on 100 mg of seroquel three times a day, but even on that, 3-4 times a day for about 30 min each, she is very agitated, cussing, and very angry. I don’t want to put her back in a facility (at this point it would be nursing home because she can’t stand, walk, transfer - she’s a 2 person assist for everything... I just wonder what else her geriatrician who is the intermediary with hospice might offer to help with the agitation at this point. I also wonder at what point this is a sign that the end is near. Like - is this terminal agitation? I feel like she’s been terminally agitated and hallucinating for a long time - but her dementia is the only thing killing her. No other health conditions. I don’t mean to say - when is this going to end (for her and for us), but truly there is no quality left. This disease sucks. Is there anything else people have found helpful that worked?

SDSmith

Hi, my mom is also in the 7th stage of Alzheimer's and it's really hard.  Not only is it hard to see her decline but the dignity of everyday living for her is just gone.  She cannot walk, speak, feed or dress herself, bathe or go to the bathroom on her own.  She's been in a home for 4 weeks and they are taking good care of her but she is highly medicated because of the hallucinations, agitation, anger and the fact that she is just completely combative towards anyone that tries to help her.  I had a very short visit with her this past weekend and in between the mumbles, she actually looked at me and said very clearly, "You look just like my daughter."  That was it, that's all I got and when she started crying, I had to leave.  Turns out, she has a UTI which explains some of the agitation.  She cannot tell anyone that it hurts going to the bathroom and it hurts my heart knowing that she was suffering for days with a UTI without us knowing.

I'm curious as to what is a fidget blanket is?  Anyways, I don't have much as far as answers for you that will make what you are experiencing any easier.  This is a horrible disease and I pray that a cure is found during my lifetime.  It sucks!  All I can say is that I pray.  I pray not only for my mom but her caretakers, my dad and even my own children and grandchildren who are also experiencing this.  As we head into hospice care over the next couple of weeks, I am actually praying that God would take mom sooner than later so that her suffering will be gone.  I love her but I hate seeing her suffer..... but at this point, we are just trying to make her comfortable with medication.

May God give you peace, comfort and understanding as you walk through the end with your own mom.  Take care+

abc123

I’m sorry for all of you. This is truly the cruelest disease of all. I’m glad you have hospice now. They should be able to answer most of your questions. I hope they will be a blessing to you and your Mom.

Cynbar

Terminal agitation is usually a brief period and is part of the active dying process, sort of a "last gasp" as it were. This doesn't sound like what you are experiencing. It can't be comfortable for her or for any of you. How active is the hospice nurse at addressing it? Usually hospice nurses are proactive at changing medications, doses etc to get agitation under control. I would try a serious talk with her nurse and see if more can be done. It also might be possible for her to have a GIP (General Inpatient) admission to a facility, hospital or hospice house to better get her distressing symptoms under control. She would still be a hospice patient and the probable plan would be for her to return home once they figure out how to better manage her agitation. You could also ask her nurse if this is a possibility.