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My mother has had primary progressive MS for 30 years and has been in nursing home care for 15 years. Most recently she had several infections that evolved into sepsis. The doctor said that she’d need a long course of antibiotics to fully beat the infection. We didn’t move forward with that (aligning with dr recommendations and mother’s wishes).


She chose comfort care and so we’ve been in hospice for about 2 weeks now. Every day is a roller coaster. She continues to drink fluids and eat very small amounts of food. We see no indications of infection (normal vital signs and no fever). She is miserable and bed bound. Barely able to speak. She says she just wants this all to end.


Has anyone experienced any similar issues with a loved one? Does it make sense to encourage her to stop intake of food and water? She has suffered so much and it is torture to see her in this state. Scared it will just continue on indefinitely.

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My mother hasn't eaten since December 17. She lives on Ensure and water on some days, and on others she doesn't drink anything. She went in the hospital with sepsis, has had 10 rounds of antibiotics since last September for the wound that eventually became septic, and managed to catch and survive Covid in January. She's been on hospice care since she returned from the hospital on January 2.

I can't give you an answer as to when it will all end. It's a daily rollercoaster, and whenever the nurses at her place call to say she hasn't eaten anything in a couple of days, I think "well, this is it," and the next day she's up and sitting in her wheelchair slugging back her milkshakes. She's lost at least 30 pounds since mid-December and she doesn't know us most days, but she's still strong enough to take a swing at the nurses when they bother her, and her vital signs are banging along just fine.
She's in no pain, but she has zero quality of life.

I can't give you any answers, but I can commiserate with you. Hang in there, and just know that one day it'll be over. Take one day at a time -- it's what I've learned to do.
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Gisha123 Feb 2021
Thank you so much for your reply. It’s so comforting to hear of others facing these things
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She should be now encouraged completely in what is COMFORTABLE for her. If she wishes to take food and fluids then she should be allowed to. If she does not she should be supported in that decision. I cannot know if you are in a right to die state. In California, with 6 month supposition by the doctor, your mother can avail herself of medications. That does require interviews and a competent mind. Check the laws in your state. Continue to encourage her to get all the comfort she is able. I am so sorry. This is dreadful for you both, yourself and your Mom.
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Is she receiving any of the meds that hospice uses to help with being calm and comfortable? This was a huge help for my dad. Even though he very much wanted out of his misery there was still anxiety about the process. It was beyond sad to have him lying in bed asking “how much longer” he was going to last. It wasn’t wanting to stay, it was a cry of being so tired of it all. My dad naturally stopped eating 5 days before he died, with my mother it was 3 weeks. We were advised with both to keep up minimal hydration as dying from dehydration is painful. A hospice nurse advised making ice chips from his favorite drink so he’d enjoy the flavor, that proved to be a great idea. I wish you peace in this, it’s so very hard
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Gisha123 Feb 2021
Thank you for your reply! Hospice is doing a great job managing her anxiety and pain. It’s taken a little time to get it down. She is still drinking a lot a taking in just a few bites on some days.
I’m getting to a place of peace in all of this. She was alert and we had some beautiful chats yesterday. Thankful for this time.
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You won't have to "encourage her to stop intake of food and water," because when a person is in the actual dying process, they themselves will let you know when they don't want to eat or drink anymore. It's the bodies way of preparing itself for it's transition from this life to the next. My husband was under hospice care in our home for the last 22 months of his life, and on Aug. 5th 2020, he didn't want anything to eat, and he went from drinking about 108 oz. of liquids a day to about 3 or 4 sips of drink a day. He died on Sept. 14th 2020, after not eating for 41 days, and not drinking for over 25 days. So everyone is different when it comes to the dying process. Please make sure that hospice is providing your mom with the necessary medications to make sure she is comfortable and not in any pain. I know this is hard on you, trust me I know. It's horrific to stand by and watch someone we love deteriorate in front of our eyes. And like you said it is very much like being on a rollercoaster. Just make sure you spend as much time with your mom as possible, and leave nothing left unsaid. God bless you.
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Just wondering how she is doing now? I see you wrote this in Feb 16, 2021. I pray you and your family are doing okay. This is so difficult.
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