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?
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.
So sorry for everyone’s losses.
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.
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.
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.
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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