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Has anyone encountered this with their loved one towards the end? My LO, who is normally, content, seemed annoyed and agitated yesterday. I spoke with the MC staff and am calling Hospice tomorrow to discuss it. It's not a UTI, so, I'm now wondering if she's in pain. She hasn't had the Morphine yet. How do you know when it's physical pain or mental distress?

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My mother passed away on Dec/9 - Hospice at home.
She had been discharged from Hospital with Hospice, they gave her 1 to 2 months. They were correct. She lasted for exactly 1 month and 3 days.
She was agitated every day while at home. She needed to go, to go, to go somewhere but go out. She would say let's go eat out, let's go for a coffee. Hardest thing is that she could not walk, she could not hold her weight, she had lost arm-hand coordination (could not clap hands together), which made it very hard to take her out.
Her agitation also showed in her picking on her bed sheets. Could not keep anything heavy (blankets) on; wanted pants, did not want pants, wanted water, then rejected water; did want soup, then rejected soup; she wanted out; change my blouse, change my pants; give me my purse, take my purse. Give me my boots, slept with the boots on nobody touch her boots!
Hospice treated her with 1 ML Haldol (yes believe it!) when necessary for agitation.
We managed to get take her out (on wheel chair) to walk around the block. That would appease her. Only 1 week before, she stopped indicating she was going out, she slowly became unresponsive.
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Reply to Onlywhenlucid
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I visited with the hospice nurse last week. Mthr had become agitated in a weird way like this and I thought it might be terminal. Nope - nurse put her on seroquel. We'd taken her off all the psycoactive drugs and nurse thought this was one of the behaviors returning. She's much happier today after getting the pills. Hope you have as good nurses as we do!
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Sunny, how is it going with LO? How are you?
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Reply to BarbBrooklyn
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I believe it Cwillie. I wonder what is wrong with them. Maybe, they have a checklist of active dying symptoms and if it's not on the checklist, they don't think about it.

I recall that years ago, when my LO's mother, (my great aunt) was in a nursing home, I left my job to go visit her. I think I've posted about that day here before. I got this sudden urge to go visit her and take the gift I had for her. I had planned to go a couple of days later, but, instead left the office immediately when I got this feeling. I talked to my aunt, who seemed quite unwell to me. She asked me to look after her girl, (my cousin), and I said I would. Her doctor was making rounds and I stepped out and asked about her. He was upbeat and said she was doing better. I didn't understand, but, I said my goodbyes and left. She died the next morning.

By comparison, I would say that my Aunt's health, at the time of her death, appeared to be FAR better than my cousin's at this moment. But, what do I know. I just wish they would be more forthright with me.
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I had a nurse express surprise that my mom had been moved to the "serenity room" and was actively dying - seriously? She had been totally dependent the entire time she was there, was 99 and had been prescribed antibiotics for pneumonia the day before, how could there be anything surprising about her inability to keep fighting? Instead of giving the benefit of their experience it seems that nobody in long term care wants to acknowledge the elephant in the room, that almost 100% of the people residing there will die there. I just don't get that.
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Yes, it's such a mystery. I've read about how when someone has that kind of wasting, the blood system is all out of whack. I'm not sure how it's compatible with life really. She also has had some drooling. To my knowledge, her BP has been good, but, I think they check that once a day, along with BG. She is also diabetic. Then, Hospice checks when their nurse comes once per week. The MC staff and Hospice seem very upbeat about things.....I don't get it. Do they see what I see? IDK......I think they want me to feel better, by acting like she's fine. (They don't say fine, just that she's about the same, but, she doesn't look the same or act the same.) Yesterday, she did not look content at all. I really want to address that.
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Sunny: I just want to mention that my mom's "vitals" were just fine until 10 minutes before she passed. In retrospect, I don't think they tell you much at the end of life.

I'm not a nurse or MD; maybe someone else can opine on this.
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Reply to BarbBrooklyn
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If her blood pressure is normal, then she's likely not in any significant amount of pain. I'm so sorry you're both going through this; such a difficult thing to witness and to experience, I'm sure.

Here is a link to an article on this very subject:

https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/symptom-control/agitation


Sending you a big hug and a prayer that your mom's agitation can be calmed soon. Ativan worked wonders when Hospice administered it to my Dad for his restlessness and agitation at the end of his life.
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Onlywhenlucid Dec 29, 2019
Lealonnie1,
My mother passed away on Dec/9. just a month after being discharged to home with Hospice.
For agitation they gave mother Haldol 1 ml, when needed.
Well, we needed her to be calmed ...but now in my grieving, I regret allowing them to give her Haldol (which as you may know, it is counter indicated for Lewy Body yet they gave to her for agitation.
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Barb and JoAnn, I appreciate your comments. I'm sorry about your losses.

From what I am told, my LO has good vitals and eats well, but, she suffers with wasting. Has lost weight despite high calorie intake. She is mostly bedbound now, doesn't speak. She used to slap her hand down on the surface in front of her at regular intervals. It wasn't an angry slap, but, like a slow, regular, consistent pat. She patted the table, bed, etc. with her right hand. That has recently stopped. Yesterday, she just laid in bed looking agitated and even tried to bite her arm once. That just isn't like her at all. She had just been changed and I wonder if she has pain. The staff is very gentle with her, but, still. She has no fat or muscle anymore. I'm not sure how she could not have pain. She has no fever or sweating.
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Onlywhenlucid Dec 29, 2019
Sunnygirl1,
Is your LO incontinent? Was she able to transfer herself?
Is she speaking or calling deceased loved ones?
By this time Hospice might recommend you start using morphine.
Make her comfortable, it is so well worth it!!
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My Moms anxiety was humming. Everyday it got a little louder until it effected the other residents. She was given something for the anxiety. My daughter, RN, agreed because agitation is not good for them. My Mom passed about 2 wks later.
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Reply to JoAnn29
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Sunny, I'm so sorry that LO is having a problem.

My mom, with vascular dementia, CHF and some other co-morbidities, fell in the bathroom, with an aide and was determined not to have anything more sserious than a broken wrist. she appeared to give up.

Mom was in bed; face twisted into horrible pain/agitation presentation and that's when I insisted that we bring in Hospice (POA brother was resistant up until that point). Hospice meds (Morphine and Ativan) gave mom some peace (at least to judge by her facial expression).

I hope that your lo has an easy journey.
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