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Mom was put into hospice about 10 days ago. She had fallen on December 20, went to the hospital with a brain bleed and fractured face, but managed to "recover" from all that in about 3 weeks (miraculously she did not break any bones like leg, arm, hip, etc.). Unfortunately, she was put on a feeding tube and hasn't been able to come off that yet due to some issues swallowing and just her overall weakness and sleepiness. The hospital released her to a rehab facility as they said she was stable medically, but after a week she ended up back in the hospital with pneumonia from the feeding tube. After a few days on antibiotics, the hospital released her back to rehab again, saying the pneumonia was under control. However, that week back in rehab she seemed to take a turn for the worst. She still wasn't progressing with therapy for the swallowing, and despite having her in a wheelchair and going to some activities once or twice, she still isn't able to do any kind of rehab to get her walking and moving again. Then she started vomiting and having diarhea, and shortly after that her stomach filled with an extreme amount of fluid from her liver disease. At this point we were told that she wasn't progressing in rehab and they had to kick her out. Also, the doctors said there wasn't any more they could do for her, and due to her liver disease, they won't do any type of procedures on her, including tapping her stomach to relieve the fluid. We were told hospice was the best option, so that is what we did. She was moved to a boarding care facility for hospice patients, is on oxygen and morphine every 3 hours, but is still in extreme pain. She is also still on the feeding tube, which she keeps trying to pull out. I live 3000 miles away so my brother is dealing with all of this on a daily basis, but he is heartbroken seeing her like this and is so frustrated that she just seems to be hanging in "limbo." We have the DNR, living will...all that stuff in place. We've been told that it won't be long before she passes, but in the mean time, he can't stand seeing her in pain like this. She is still aware of what is going on, but when she is awake for even just a few minutes she just cries in pain. What can we do to help her? I keep praying that her time will coming sooner rather than later, but that doesn't seem to be working.

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Hulacat,
I'm so sorry your Mother is hurting so bad.
My Mother suffered with alot of pain too.To control her pain,she was on liquid Morphine and a 75mcg/h Fentanyl patch which really helped her.Maybe this would help your Mother too.It's a patch you change every 72 hours and hopefully her body would absorb it.You could ask her nurse or Primary doctor what they think.

One day,God will take her in His perfect timing,but I know that in the meantime,it is so hard to watch your dear Mother decline.She is lucky to have you and your brother and the good care she is receiving from you two.

I hope you find something that helps your Mother and soon.
Take good care~Lu
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Her morphine can probably be increased. Some healthcare workers are more comfortable doing this than others. Your mom shouldn't have to be in pain.
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I’m really surprised the hospice is allowing her to be in pain. Can they up the morphine dosage? Are they giving her something such as Ativan to keep her calm? Also, is she still getting food in the feeding tube & can it be removed? If you’re wanting her to pass more quickly (I’m not judging, I was praying that God would quickly let my FIL in hospice pass) but she’s getting that kind of nourishment, is it helpful?

So sorry y’all are going through this. It’s awful sitting there watching your loved one slowly pass away.
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Why on earth is the feeding tube still in place? What sort? Are they using it for oral morphine or something?

The aim of hospice is to reduce all negatives and increase all positives as far as possible. I know your brother must be overwhelmed, and I know you'll hate to think of giving him more to do, but it seems like somebody needs to be made to stand still in the room with him and pay attention to the details of your mother's care. Anything that doesn't need to done to her should be taken off her burden. Anything that can be done to relieve her symptoms should be done. Is he the speaking-up type?

I am so, so sorry that you're all going through this. I hope he'll be able to get somebody in there quick to do an overall review and make your mother more comfortable. Poor lady.
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Hulacat13 Feb 2019
thanks for your comments. Yes, bro is definitely the speaking up type, but as of today, everything has been removed from mom except the morphine. Bro said she is resting comfortably now. My gut tells me all of this happened between hospice care visits. She may have been comfortable earlier in the day when the hospice worker came, but something changed later before the next worker came. They seemed to have responded very quickly once they saw the situation had deteriorated.
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I know my mom keeps changing her mind everytime she goes in the hospital.
First it was DNR next time a full code . Now she is back to a DNR. Could your mother have changed her mind at some point? Cant your brother have teh feeding tube removed?
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You don’t need An IV or a feeding tube to get morphine. There is a liquid and a tablet that is administered under the tongue. That’s usually what hospice provides when the patient cannot swallow. It sounds like her body is shutting down and the feeding tube is the cause of her issues-not the liver disease! If she’s getting food through the feeding tube and her body can’t digest it, it’s just sitting in her stomach causing extreme discomfort. I would get her seen by a doctor ASAP!
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Hulacat13 Feb 2019
The liver disease was actually causing fluid to build up, which was causing her a lot of discomfort. This has been an ongoing problem in the past year and she has had to have her stomach tapped several times. At this point, however, doctors won't even discuss that option as her body wouldn't tolerate even a minor procedure. Sad that they just have to "leave" her in this condition until nature takes it's course.
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Thanks for all your responses. As of a couple of nights ago, mom was taken off the feeding tube and all meds except the morphine, which I believe they have increased to more frequently. They also have her on 24/7 "watch". My brother said she is now resting comfortably. Now we just wait...
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I will keep the Fentanyl patch idea in mind, should the situation change again. Right now everything has been removed except the morphine, which seems to be keeping her comfortable. Thanks for your comments.
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I'm glad she's comfortable now. I know the waiting is hard ((hugs))
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I went through the same thing with my mom towards the end of her life last September. I was beside myself trying to find alternatives to help improve her health before she was resting on morphine. I'm so glad they got your mom to a restful painless state.
Be blessed & know you guys did all you could do in this difficult situation.
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So glad the increased morphine seems to be helping. My father also had liver disease. They added Haldol towards the end and that seemed to make him much more comfortable.
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Hulacat13 Feb 2019
Thanks for the info on the Haldol.
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Just wanted to update everyone who has been so supportive: My mom passed away earlier this evening. My brother said she was resting comfortably the past few days, once they removed everything from her, but I'm glad that she is no longer in any pain, physically or mentally. I thought I had come to terms with this, knowing this was going to happen, but I'm still quite sad right now.
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((HUGS))) Hulacat, I'm sorry for your loss. Even when we expect it it's not easy.
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I too am sorry for your loss but glad that her suffering was not prolonged longer. Of course you are sad. As my mother slowly detoriates I often wonder how I will feel once the end arrives. It is all such a complicated process. You are human and it is natural to grieve. My father died exactly 9 years ago. The end was also very difficult. I knew he would not have wanted to live a life with great impairment as he basically was a very vital person. I attended a bereavement group for several months which helped process the loss. It took time but today I focus on the positive aspects he brought to my life and feel that his passing was meant to be and our family was spared the sadness we felt as his suffering might have prolonged his life needlessly.
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Hula (((((((hugs)))))))).

I'm so sorry for your loss.
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I'm so sorry for your loss (((((((Hulacat))))))))))). Your mom is at peace and not in pain anymore.
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Thank-you for the update, and my sincere condolences on the loss of your mother.
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Our thoughts and prayers are with you and your brother..Mom is at peace now..
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So sorry for your loss.

For me it was a relief. Mom had declines steadily for 3 years. At 89 she looked so old and frail. She aged drastically in those 3 yrs and out of 3 children I saw it daily. Mom would not wanted to live that way. So my memories are those last 3 years. Trying to remember the good ones. Recently started back to Church and had to change pews because Mom wasn't sitting beside me. We sat in the same pew, same place for years.

Some Churches and Senior Centers have grief meetings.
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