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Mother is in a SNF on hospice, after spinal osteomyelitis treatment led to kidey failure and mental status decline with a new diagnosis of end stage dementia that was uncovered by all of this. A week ago, over the weekend, she'd had a big agitation episode, two ER trips for falls including one gash to the forehead. The facility was saying I needed to hire a sitter. I am trying to use her funds to just pay for a bed. Hospice finally got the meds right. She was a lot calmer, but still awake enough to eat. Over the weekend she looked to multiple nurses, including hospice, like she was transitioning. Yesterday I heard myself the death rattle. Hospice came and confirmed it.Her o2 Sat was 76 on 3L. That nurse has 30 years's expernience. Said her chest was full of rattles. They gave drying out meds, and morphine for labored breathing. We brought her dog in, she woke up a lot and tried at least once to touch him herself. Her eyes would open but not focus.I go to see her today. She's WIDE wake, sitting up in bed. Very restless. Talking in lots of word salad, random "No no no!' and "Ow!" But also some full sentences. "I've gotta go get a hamburger!" Random laughing. No rattle ., Nurse said chest much clearer. Couldnt get the o2 monitor to work. Last night they held dinner because they were worried about swallowing and secretions. When I left nurse was easily feeding her applesauce.When will this end? I know people will say it's a rally, common. But she already had a rally from when she left the hospital (minimally responsive for days, failed swallow test) and then became awake, aggressive, and eating some. And then the decline over the weekend. And now today. Hospice did say her arm circumference was 24.5 on admission July 16. Today it is 23.0. I know many of you don't know the story, but I have a number of posts on here about the horrible challenges of dealing with my mentally ill (and now demented) mother.

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I was told my mother had a rally after taking to her bed and being semi comatose for 24 hrs. I'd gotten a call from the hospice RN that she'd had a status change, and was in a rapid decline. Then a caregiver told me she was awake, sitting in her recliner and eating, yucking it up that next evening, after I saw her in bed barely alive that very day! She was 95+ yrs old and had Showtimed her way thru dementia for 6+ yrs at that point. I thought I was going to rupture a blood vessel in my neck or die from an aneurysm right then and there, tbh. DH and I rushed over to her MC the next morning expecting to see her laughing and joking, but she was in bed, comatose, where she remained for the next 5 days until she passed away peacefully. She was finally at perfect peace and the nightmare was over for both of us.

It may sound terrible to say, but these personality disordered people seem to create a huge amount of drama right to the last possible moment. To the bitter end they act up in one way or another, keeping our blood pressure thru the roof. Its a wonder WE are still alive.

Be strong. Or strongER. God will be ready for mom soon.
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I am so sorry you are going through this. It's such an emotional roller coaster ride. I didn't visit my mentally ill and demented mother often or for long. It was too stressful for me. She was well cared for by the staff. Can you detache and distance a bit for your own good. It's what I had to do.
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So sorry, this is impossibly hard. Just talked to a friend whose mother is also determined not to leave this world without a big fight. My friend is exhausted, as you are. Even the best and most experienced hospice nurses can’t predict the end. It happened the opposite way with my dad, the hospice nurse thought he’d last much longer and was shocked by his precipitous decline. Seems dying is a very individual thing. Wishing you rest and peace
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I’m so sorry that you have to witness this.
But it will end , the kidneys will fail .

Don’t feel as if you have to stay for long visits . Death truly is a private experience for the person who is dying . The dying will often turn their back from you and face the wall to die in private and/or wait until the visitor has gone home .
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Oof! How can you recognize an end-of-life agitation/rally in a person who has had explosions of agitation and rage for years? But I do think that her dipping into states close to death is a sign and her periods of energy are going to be shorter and shorter.

I also think that people can have extraordinary strength and stamina at the end if they feel wronged or unable to accept that they are indeed dying. I can imagine that someone like your mom is in this category and will bitterly fight (literally) until the end, until she is nothing but a skeleton using every ounce in her being to hang on.

My brother wasn't mentally ill, but he was in denial (and some rage) at his terminal cancer diagnosis. He was also fairly young, so he had physical resources paired with a hardcore fight mindset that made his transition absolutely miserable, even with hospice support. He just did not want to let go. Even the hospice workers were surprised how long he stretched out that last phase of dying, breathing like he was running a marathon for days, not hours, on a heavy dose of fentenyl (patches), i.e. anti-anxiety and some narcotic, plus oral morphine and ativan for break-through agitation. You just want them to have peace.
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Do your very best to look after your own physical and emotional health through this ordeal. Although it seems endless, it will end.
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I want to say that my grandmother rallied 3 times in the last few weeks. Most days she was just listless, and seeing people in the corner that she talked to (her brothers and sisters and even her parents, but not my grandfather until right before she passed)

Because of the potential for aspiration, hospice no longer gave her food or water, just swabbed her mouth if she indicated she was thirsty. Gave comfort meds to keep her calm and pain free. People would visit and she would engage with them but when it was just the immediate family - she would go right back into her shell.

If memory serves, it took 10+ days. My mom called me and she said I think she has passed but honest to God I've thought this a thousand times (because her breathing would become so shallow). She didn't want to call hospice in unless she was sure (they were from just on the edge of our area for service because they came highly recommended) My DH and I went over and did all of the same things that mom had already done but it was reassuring to her because I think part of end of life care for the family is just feeling like you are losing your mind half the time anyway.

I'm also going to concur with ShirleyDot. When someone is full of rage or antagonistic during life, their passing is often that much harder.

My FIL was not a good man. He was abusive, angry, mean etc. He was terrified to die. He fought for quite a while. He tried regularly to get out of the bed, forgetting that he couldn't walk. He had falls. They put his bed almost on the floor with mats down. He accused everyone around him of killing him. The truth was that he had lived much longer than anyone expected with all of his comorbidities.

My grandmother - similarly - willed my grandfather to stay alive for a month - he passed the first time she left the room for more than a minute. She was the same in her own death. She was scared to die. So she fought and fought to stay alive. She accused all of us of trying to kill her. Her existence alive was miserable for her. But it seems it was better than the alternative to her.
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I was in your shoes about a year ago. It’s so hard. It will end. My dad was on hospice for over a year. So many ups and downs. My own health suffered and I left him in the care of competent caregivers and hospice to attend to my own medical issues. He was in the final stages when I got back and died about 12 hours later. I was there. It sounds like your situation will resolve soon. Let the caregivers at the facility do the care and hospice and don’t be there all the time. I agree with what others have said here. Difficult people have problems letting go of control. I’m sorry this is dragging on. It will end. Big hug.
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Oedgar, Great big warm hug!!!

I can't imagine how very hard this journey has been and is going to be until your mom passes.

Take care of you while you are there for her.
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Went through this with my dad. It was so painful.
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Beethoven13 Aug 2, 2025
Same. It will end. Try to take care of yourself. Let the staff at care facility and hospice take care of her. Try not to get overly invested either way. I know it’s hard. Go away for an overnight. If she dies while you’re away, you’ve done enough. This will end. I was in your shoes about a year ago. It went on and on. Hospice for over a year. He had 24/7 caregivers at home that cost a fortune. I had a medical situation of my own, went away for 3 days. He was on the final watch when I returned and died later that night. It’s so, so horrible to watch and not knowing when or how or how much longer. I think your situation will resolve soon. It will end. Take care of yourself and let others help in the meantime. Big hug.
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