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very healthy till stroke, willnot get food or iv . cannot swallow, has dementia

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My brother in law was in hospice in a nursing home, and on a feeding tube which was drowning him in fluids. They took him to a hospice house for his last week. They took out the feeding tube and stopped water too. He didn't need it. He was dying and the body doesn't need anything when it is dying. The fluids were not being absorbed so they just gurgled in his lungs and throat. It sounded awful. When he got into the hospice house he was in complete peace and had absolutely no complaints. He was ready to meet his maker and he knew that he was going to a better place. Hospice house was the doorway to Heaven and everyone who worked there was wonderful.
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My sister was 63 years old and had suffered with Pick's Disease/FTD for 11 years. She was 5' 4" and weighed about 120 # usually. She ate VERY well, and generally walked around the house and danced it off daily until one Sunday morning, 15 days before she died. That morning she went from walking independently to not being able to even stand. She barely spoke. At breakfast she ate part of an omelet, oatmeal, and juice. By supper she was bedridden (& then for the remained bedridden for the rest of her life), not speaking, and was able to swallow only a few bites of a ground up pot roast and noodle casserole mixed with applesauce Sunday evening. By midnight, she could no longer swallow her meds crushed in applesauce and then slightly liquified with her favorite juice, even though this mixture was given to her extremely slowly with a 10cc syringe (no needle of course.) I should tell you that I have been a nurse for many years. I've even been a hospice nurse for about 4 or 5 of those years. I have seen how patients often (in one way or another) reject tube feedings and other forced feedings as they'd caused misery. (I firmly believe that no one should do anything to another to hasten death nor prolong life inappropriately. Rather, our job is to help safely provide comfort and caring in order to help one on his/her journey whenever/wherever that is.) By Tuesday I was crushing my sister's Morphine & Ativan and administering it buccally with a few drops of applesauce thickened water. She started having periods of nonresponsiveness up to a few times a day. These periods would become more frequent and longer in duration, although most of the time through her death she was minimally responsive. Of course I still talked to her, softly read and told stories, played and sang familiar favorites (even many taped by our mother), etc., etc.. It wasn't long before I was giving some and then almost all of her meds rectally. We had some trouble (mechanically) maintaining a sub-q infusion (even at a KVO rate) so this option never really materialized for her. I kept her skin (including her nose and mouth mucosa) cleaned and moistened, and turned her and repositioned her at least every 2 hours, usually using plenty of pillows. My goal was to try to maintain the highest level of comfort possible, and I can honestly say that I am quite certain my sister was as comfortable through her death as possible. She did not needlessly suffer any additional distress or misery.
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Our hospice person said 14 days was the longest she saw anyone in a similar situation last. My FIL lasted 11 days.
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mom lasted 17 days. hang in there, my prayers are with you.
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One thing we've notice on hospice care is that if a patient has been on IV fluids just prior to coming onto hospice care....for example, if they had been in the hospital just prior to coming onto hospice care....they seem to last longer. The IVs seem to hydrate the body (which they're obviously supposed to be doing), so the body has more fluid to live off from even when an IV is no longer being used and the person is no longer taking in any fluids. Also, it can be painful to force food or fluids into someone near the end of life. Their body/organs are shutting down and don't need the nutrition and fluids. The food and liquids kind of end up just sitting there since they can't be absorbed or are absorbed very slowly. Not a comfortable feeling. In our hospice program we encourage caregivers to offer food and fluids to their loved one as long as they can safely swallow and/or indicate they want it. They might not be able to verbally say they want it, but may open their mouth when food is near (although that can be kind of a natural reflex.) Regardless, we keep their lips and mouth moistened with some little sponges on the end of a stick that are dipped in water. I've seen a patient go 3 weeks with no food or fluids, but she had IVs at the hospital prior to admission on hospice. The human spirit is pretty amazing!
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My dad lasted only three days. We were definitely blessed to not have to watch him go slowly.
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My mom lasted exactly 4 weeks once Hospice started. In the first week, she was eating very little and not drinking much. She soon was unable to swallow. So hard to watch and I wanted Hospice to give her an IV since she was dehydrated. They told me it is harder on their body to hydrate her and could cause congestive heat failure. They believe in comfort and peace. My mom died peacefully and in no pain. It is hard to watch and sometimes I do have doubts that I did the right thing. But I am always reassured when I realize it was all God's choice how she was to die. I now feel blessed that she died at home in her room surrounded by so much love.
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And you did it...bless you. This is a beautiful thing you did for your sis. That is what Hospice is all about and I can say from experience, they are wonderful people. Thank you for sharing your story, 4Laney, and being a Hospice nurse.
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My mom, when her lung cancer metastasized to bone cancer, said "that's it" and went home to die. After a very short time (about 2 weeks of increasing pain/morphine), she refused even her favorite nutritional shakes. Her only "intake" of fluids was her IV morphine. She lasted another 6 weeks. When I asked the hospice nurse how she could possibly be lasting that long, she said, "She's not ready, yet."

The human spirit is astounding. Blessings on you and your loved ones. I hope the passing is soft and easy ... however long it takes.
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When we're watching a loved one slowly deteriorate in front of our eyes, it is a very rough time both emotionally and physically. We want the best for them, to be comfortable and without pain. Each of us has our own idea what is best and others might not agree. That is the beauty of Hospice care. They manage the pain and make sure the patient is comfortable. None of us wants to play God, but if you know what the patient wants and had the conversation about their end of life wishes, then by all means, their wish has to be honored. And that may very well be no DNR or IV's or food intake. It is a tough place to be if you are the one making that final decision for their sake. Everyone walks a different walk and until we've walked in your shoes, well... xxxooo and blessings on all us caregivers. We are doing the Lord's work.
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