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My mother is in end stage Alzheimer's and has been in a wonderful facility which includes hospice care for the past 8 years. In the last 2 years, any awareness she exhibits is for a split second. She has been hand fed pureed food and liquids for the past year, and was consuming 40% of her meals, although lately she has had a little difficulty swallowing. This past week she has been unable (or unwilling) to swallow food or liquid at all, and we started her on IV fluids 3 days ago to keep her hydrated as it may be temporary. We will not be inserting a feeding tube. I'm reading that continuing hydration makes the patient more uncomfortable and can lead to more complications if their body is indeed trying to shut down. Should we make a decision to remove the IV and let things proceed naturally and at what point should we do so? We assumed we would continue, but are realizing now it is a choice.

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GerriB, I'm so sorry you are going through this difficult time, my thoughts and prayers are with you and your family! You are doing the right thing. Also, with her limbs contracting, they might think about putting her on a muscle relalant like diazepam or one of the benzodiazepams, as this could be causing additional pain and agitation.
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Spoke with her care nurse this morning, and consulted with my sister. We are only going to continue the IV for a few more days just to see if her drinking/swallowing improves. After that we will discontinue, we don't want to have her go through having a new IV line placed every three days. She has contracted limbs and they have been giving her Oxycodone orally for quite some time, but they are changing her to morphine drops. Within a few days of taking her off hydration we should know if other symptoms are showing and we'll proceed from there. The facility she is in is extraordinary and they will continue to handle her comfort care/hospice care until the end.
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IV fluids bought us a week. Then we saw the red dots on her legs, telling us that the capillaries were breaking down. So fluids were stopped. That's about all you will get. Sorry.
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When our Mom, who was dying of uterine cancer, was "actively dying and on Hospice was admitted into the Hospice Hospital, all 6 of us, her children were brought into a round table along with her hospice team, her Dr's and the nursing staff. We were told that she was actively dying, and that at this point it would be better for her to have all IV fluids discontinued. She was already in a near coma situation, asleep almost all day and night. She had no interest in eating or drinking, and we were told that continuing fluids would put additional strain on her organs, possibly causing GI distress, a build up of fluids in her lungs and mouth, causing breathing and swallowing difficulties, and also, once you do d/c fluids, your body begins creating natural pain relieving hormones, and give her a euphoric feeling with less pain. Her pain medication was Not stopped, only fluids, and we continued to use the spongettes provided, to keep her mouth moist and comfortable. She showed no sighs of desiring fluids, and we felt very comfortable with the way in which it was explained, and their loving treatment of our Mom. She was comatose for the last 6 days of her life, but she had been fully aware that things would be like this ultimately, and she made every effort to say goodbye to her friends and family, as well as give EVERYONE she ever knew in life a gift to remember her by, that's just My Mom, and the way she wanted it to be. In rhe 5 months on home hospice, she sent her many Grandchildren out to purchase gifts for her, and didn't leave anyone out. My advice to you is to speak with her Hospice Dr's, and make the most of the time you have left. Our bodies are not meant to last forever, and though sad, dying is a part of life, and we shouldn't try to postpone the natural order of life, when their bodies are shutting down. Be good support for one another and God bless you on your final days with your Loved one.
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When dad was in the process of dying, and on in-home hospice, he only agreed to having 2 bags of IV fluids and only because it was the holidays and he didn't want to die at Christmas time and have that be a constant reminder to us every year.

He passed peacefully 45 minutes into the New Year. Those 2 IV's kept him going for a day.
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The use of IV fluids is not usually part of hospice protocol because it puts added strain on the body's organs that are beginning to fail and does not increase the comfort of the patient. The IV can be left in so that the nurses have access if medications need to be given for the patient's comfort. it does not need to be hooked up to a bag of fluids. Continue to offer sips of water or a wet swab to suck on if the patient co-operates and make sure her mouth is kept moist and clean.

Difficulty swallowing can be made much more difficult if the mouth and throat are dry.

Stay in close touch with your hospice nurse, he/she will be able to assess the patient and depending on how close to death she appears to see advise on appropriate treatment. This is the most difficult time for family members so support each other and do what is best for the patients comfort and set aside the desire to keep her longer.
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I agree, please refer to your hospice company regarding the IV.

IV hydration can be detrimental to someone with dementia if their body is beginning to shut down and the lack of fluid intake is part of that. The fluids can build up and get into the lungs. Someone with advanced dementia can always pull the tube out as well.

I wonder if it was the nursing home or the hospice that put in the IV? I would be surprised if it was the hospice.
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I believe the hospice would be able to advise you on this. They are the ones that should and will tell you. If its a choice you have to make they will advise you on what is best.
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What does hospice say? What does your mom's medical directives say?
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