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My dad, 76, passed August 14th, mom, 66 years young, had a massive stroke August 31. She was DNR, DNI, no feeding tube, no artificial means. I had the doctors try a feeding tube, I had to. It gave no positive results so I had it removed after a week. I don't know how long we have. To lose them both so close is devastating, but I have emotionally shut down, I haven't even cried over daddy yet. I am struggling with removing the feeding tube even tho it was moms wish. Her pain is so great I cannot even hug her. Her heart and lungs seem strong, but physically she has lost alot of mobility, mentally she is almost completely disconnected, left eye blind, no ability to swallow. I'm lost - if anybody has experience with removing feeding tubes and what happens now as we are in Hospice care, please share. I know once I let my emotions come back I am going to crumble.

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staceyb, no. She is in a nursing facility since I wanted to keep her close to me in PA and her home is in MD, plus she did not want anybody in her home, ever, sometimes not even me. She didn't like my house, so I didn't want to upset her, it was too big, too many steps, too cold, too many cats, she had quite a list. So this was our best option.
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BarbBrooklyn, the doctor finally came in Thursday night, Hospice is to be officially starting on Sunday. I had no idea it would take so long but I am getting more time with her. She sleeps mostly, says some of the most off the wall things I just have to laugh. I snuck in some chili from Wendys. She actually said she had just been sitting there wanting some. I know it was risky but I also knows she loves it. All was good until she stole a cracker with her good hand and shoved the entire thing in her mouth, locked her jaws and just made big eyes at me. The lack of control with impulsive in a stroke patient can give you a scare. I couldn't even pry her mouth open.
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Angie, do you have the Comfort Care Kitchen, that Hospice normally sends out the Day that the Patient begins on Hospice? If so, you should be able to simply call Hospice, and get their Authorization to administer the pain medication from the kitchen, probably a liquid Morphine. They should be able to do this right over the phone, even before they come to visit, ad it is All about Comfort Care at this point!

I'm so sorry you are going through this! I too lost both my parents pretty close together, though not as close as you are dealing with. I'm am currently doing Hospice care in my home for my FIL, and our Hospice team is fabulous, often changing medication orders over the phone.

I am wishing you peace and comfort for you Mom in the coming days! Take Care!
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Angie; has anyone from the hospice organization been to see your mom? If she's in pain and no one is doing anything about it, you have every right to be upset. They should be starting morphine if she's in pain; can the NH doc write an order for that?
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I am so sorry for your loss. Losing your father last month and now your mother is in hospice. All you can do is take on day at a time.

My father had a catastrophic stroke last September. He was in the hospital for four days and then we brought him home with hospice. He did not want a feeding tube. We honored his wishes. He was in no pain or distress because we gave him the comfort meds from hospice. He lived for twelve days with his entire loving family around him.

You are doing the right thing. It is not easy. Your mother should not be in any pain. Call hospice if you have any questions day or night. Hospice has grief support whenever you are ready.
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Angiedd, my heart is heavy for you. I can tell you that years ago my MIL had opted for no feeding tube, and she lay unconscious for about a week before she passed. She was given morphine, and we were assured that she felt no pain.
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Angie, if the feeding tube "gave no positive results", there was no point in leaving it in. You made the right decision to remove it.
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Most hospice services offer bereavement counciling. It can help. Check into it.

I know it's horrible to go through this but the feeding tube would just prolong the suffering. You're doing the right thing. My best wishes to you in this difficult time.
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BarbBrooklyn, no, the nurse has not been in yet either. They are saying tomorrow, hopefully. I work for the same company and I am familiar with some of the people who are on her hospice care team, and the physician. I have not pointed that out to the physician and the team yet because I don't want to be that person but I want quality care, total comfort and when they have not seen her yet it is all based on the nurses opinions at the nursing home. Fortunately, I do have faith in them as my son resided there a few years ago and they were fantastic.
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Has the Hospice nurse been to see her? My mom was close to the end when my brother consented to hospice, and only the hospice nurse saw her.

I'm so sorry that this journey with your mom is so painful and protracted.
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ZoeAtTheHut no feeding tube was moms wish. I guess the self doubting is normal, with false hope.

I work in stroke rehab, so I know, knew, the outlook was very grim from the start. When she is at peace I will somehow take time to breathe, for now I have to stay busy, keep my mind busy when I am not with her.

Her pain is still bad, whether it is real or imagined, it is real to her and that makes it real to me.
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jeannegibbs she was started on hospice before moving to the nursing home, as of right now it has been 31 hours and the hospice doctor still has not been in to see her or contact me.
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You will be strong for as long as you need to be strong, then you will have a flood of emotions to grieve. But right now your brain is in problem solving mode with your mother, pushing aside the grief from your father. Those feelings will come back.

I think i read it correctly as you tried the feeding tube and it is now removed? If that is your mums wish and you know her quality of life is not going to improve, i would respect that wish. I would also make sure the staff are on top of all your mums pain management. She should not be in so much pain you can't hug her. Get onto the doctor, they need to make sure she is comfortable and as pain free as possible.

If you can take a little time out for yourself through this, it will help you a lot. Even a couple of hours to breath and have a cry. It is a lot to cope with in such a short time and now your mother in such a difficult situation. Just remember to breath. We are here for you.
All the best.
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You upheld your mother's wishes. Be proud. Is she on hospice care? They can manage the pain.
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