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Mom, who is 93, diagnosed with advanced congestive heart failure, and on morphine and halidol, has been like this for about two weeks. She signals wanting small amount of hand fed pureed food and water and ingests, but it’s not enough for nourishment. Coughing and chest fluid are now under control. Doctor said bowels are fine. But she cannot move, is like she is trapped in her body, but appears to be in no pain until moved for changing. Too weak to talk. Sleeps on and off. So heartbreaking, sister and I are there every day. Hospice team says this is normal - is it? If not, what should we do?

Yes, they begin to want less and less food.
An increase in foods would likely lead to at least some of it going into her airway. This could lead to aspiration pneumonia and a quick death. If, however, she indicates she wants food for slightly thickened water, cool gelatin, you can try small amounts if her head is raised and she is awake enough to cooperate and have a good swallow.

Your mother is dying and I encourage you and sis to talk with the hospice nurse and social worker about what to expect. As her organs fail (which may come quickly due to her very weak heart pump) she will become confused as toxins build in the body that heart and lungs and kidneys cannot address. She will become confused when this happens. She may begin to indicate she wants things. To get up, to eat, to drink. She may pick at things, hallucinate. This is expected and it is why there's mercy in drugs to keep her VERY SEDATED.

Nurse Julie on youtube is a hospice specialist and can help you understand what you are seeing/will see as well. My heart out to you. This is a very difficult time to stand witness to one you love.
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blueiris Dec 6, 2025
Mom has already begun wanting less and less food and fluids just like you said. Just wants enough to apparently give her some comfort. I appreciate your suggestion to check Nurse Julie’s youtube videos. I wasn’t aware of her and appreciate you telling me about her since I haven’t experienced this before and want to do everything possible to keep my mom comfortable,
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It sounds much like my dad’s final days on home hospice for CHF. He last left bed and ate anything five days before he died, last spoke the day before. I gave him Ativan, then morphine, then Haldol, this both eased his breathing struggles and kept him comfortable. One smart hospice nurse advised me to make ice chips from his favorite drink, so he’d have minimal hydration and his liked flavor, he enjoyed this right up to the end, readily taking the chips off a plastic spoon. We were told the signs of death coming would be loss of communication, loss of eating, and sleeping a deeper than normal sleep. All were true for dad. I’d advise you to rest as you can, don’t focus so much on being there for the exact moment as it’s far less important as some think, and just reassure mom of your love and care. Sometimes simply holding a hand is best. I wish you and mom both peace
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blueiris Dec 6, 2025
Thank you for telling me about how you made the ice chips from your dad’s favorite drink and feeding them with the spoon. I will certainly do that for my mom. The other day one of the hospice nurses matter of factly told me she gave the order that all fluids by mouth and food had to be stopped and since mom still wanted them, I had to call the doctor in. Thankfully the doctor disagreed and said she should still get the small amounts of comfort food and fluids she wanted for now. I will keep your suggestion about making the chips from her favorite drink in mind should her doctor change her orders. Thank you also for the other valuable information you shared.
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(((Hugs))). Managing pain is the priority. Hold her hand and tell her you love her.
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blueiris Dec 8, 2025
Thank you for responding and reminding us that managing her pain is our top priority. My sister and I sit by her bedside and monitor her care in shifts all day. When she gets to the point that she no longer wants her tiny amounts of food and fluids she has been asking for, yesterday after not verbalizing much in the last few days she said the word hungry to me, your reminder will bring us comfort.
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My dad was exactly like that at the end.
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blueiris Dec 7, 2025
Thank you for letting me know. I want to trust what the hospice team says is normal in a situation like this but posted my concerns because I was desperate to be sure.

So sorry for everyone’s losses.
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Honestly, witnessing someone die is THE worst experience I've ever had in my life and I've endured it twice so far. Even though there was no pain or discomfort involved, thankfully, the sounds, the gasps, the horror of it all was terrifying to me. And knowing I was helpless to "fix" the process in any way made it that much worse. Dad was breathing about 3 times per minute, if that. I found myself holding MY breath while waiting for him to breathe again. Mom would suddenly hiccup SO violently, I'd jump out of my skin and shake for 30 minutes.

I'm very sorry you're going through this, my friend. I admire your strength and courage, and pray that God comes quickly to take your dear mother Home. I wish you peace and acceptance along the way. Remember to breathe.
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blueiris Dec 6, 2025
You are right, the helplessness in knowing we cannot fix things is so hard and exactly why I reached out. Thank you for your kind words and for sharing your experience.
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It sounds perfectly normal. Nourishment is irrelevant at this stage. She is winding down. She will sleep more and more of the time. Be glad she is not in pain and hopefully is not in distress. That is how Hospice helps.
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Blueiris, hospice is required to offer you and other family members grief counseling for 13 months.

They say the five stages of grief are consecutive, but they often run concurrent. There is the shock of the loss, anger at the circumstances around why it happened now, wondering if the outcome would have been delayed had it not been for this party, feeling depressed about not being there. I lost my dad in 2023 and still cycle through these sometimes, but there is at the end a sense of acceptance, a sense that everyone involved did their best, and it was just his time.
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I cared for my dad with home hospice and it was quite an ordeal. I don’t think many people understand what this entails. Thankfully, your mom is in a professional setting. My father progressed quickly and was gone within a few days. I was grateful for the times he rested peacefully. I was by his bed constantly and up every 2 hours. The coughing was difficult to hear, but I was told he was not in pain. I know it is very hard to watch….Daddy couldn’t swallow so I used wet mouth swabs and applied Vaseline on his lips. We played his favorite music throughout the day. He wasn’t able to move his body so we (my niece and I) moved him with a sheet underneath to keep comfortable. I was told to keep a pillow under his legs so his feet didn’t get pressure on the mattress. The facility should know how to do much of that care.
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blueiris Dec 8, 2025
I cared for both my grandfather, who lived to four months shy of 101, and my dad and was able to keep them both in their homes until they went peacefully in their sleep only because they both remained mobile, They both had cancer and several of their final years overlapped so it was a real help that they lived across the street from each other. At the time I thought that was hard. What an incredible gift you gave to your dad being able to keep him in his own home knowing he was in the same situation as my mom! Thank you for sharing your experience and the things you did to provide your dad with more comfort. Tomorrow when I go back to stay with my mom, I will be sure to check that a pillow is placed under her legs so her feet won’t get pressure on the mattress. Although she is in a professional setting, they have so many patients that they don’t really have the time to explain a lot of things and since this is our first experience in a situation like this, we admittedly don’t know alot of the things to ask about. My mom was such a friendly people person and so active so it is especially hard to see her in this state for so long. Thank you for sharing your suggestions.
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Sounds normal. There is no more nourishment to be done, and forcing it will cause pain and discomfort. I just went through this for the first time myself. It's very distressing. The key is to keep them so they aren't showing signs of pain, like moving legs, or making pain faces. Put lip balm on her lips to keep her from being too dry. I wish I had used ice chips but I didn't think of it. Hold her hand. Speak to her as hearing is the last thing to go, so she can hear you.

Don't worry about the morphine and haldol or ativan. These are keeping her comfortable, as their organs shut down it is painful. Just be there. Share good memories. Tell her you love her. It's all you can do. The breathing sounds awful but I'm told it isn't putting them into distress, it is just hard for us to hear.
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blueiris Dec 8, 2025
Thank you for your thoughtful response, I was just standing in my kitchen tonight thinking about how I feel like I’m trapped in a nightmare after today’s exhaustive events, then remembered to check this site and found your reply.
Yes, it’s so distressing feeling totally helpless at a loved one’s bedside. I appreciate you mentioning moving legs can be a sign of pain. I didn’t realize that and although she is normally still, she did that today. Thankfully, my sister and I had already spoken to the hospice nurse and arranged for more morphine because she was showing distress when the tech attended to her so you mentioning the legs moving as an additional sign of pain was really helpful and confirmed that we did the right thing in requesting that she be more medicated. I also appreciate you confirming the morphine, halidol and ativan. It’s such a worry not knowing if they are using the meds that would make her the most comfortable, she is on all three now. The information you offered is really helpful. Thanks again.
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I’m so sorry that everything went sideways the last few days of your mom’s life. The low bpm was her body shutting down which would have happened regardless of whether you were there or not. It was not distress. As a person who has been with 2 relatives dying on hospice and who was in a life-threatening emergency myself, I can tell you that those last days and hours, they really seem to be checked out, in their own world, as their body shuts down. I didn’t really care about anything or anyone and just wanted my pain to end. It doesn’t change the fact that you were denied the opportunity to be with her but take some comfort that she probably didn’t notice and they important part is that you were with her, caring for her while she was still partially conscious. Some people hang on until they are alone and then let go.
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