Survial without nutrients/fluids

[Griswald 1]

My sister has not been able to tolerate food through her feeding tube due to extreme nausea. She has gone through so many different drugs to alleviate this but to no avail lately and now anything put in makes her feel like vomiting, which she can not do.

She has now made the decision that she is done with tube feeding, actually has had little successfull consumption within the past 1.5. Last weekend we thought that she was possibly constipated due to dehydration as there had been no bowel activity for over a week, and any of the drugs for that as well made her sick and she had to empty her tube to drain whatever contents were there. Hospice agreed to give her one bag of fluid last Sat...all went in- little came out, which established she was very dehydrated but did nothing to help the bowels even along with a Fleet.

My guess is that with the ALS progression her intestines/bowels have just stopped functioning. All the gasses from the pent up bodily waste is backing up into her stomach causing all her nasea, which at this point is no longer of great importance with her new decision. My question, which I know there is no pat answer for, but I am hoping for a ballpark on for the family is how much longer can she go on with just comfort drugs being put down her tube. Keeping in mind that "some" liquid will be infused along with her meds to keep her tube flowing. I am guestimating that she may pass within the next couple of weeks. I will appreciate any insight that others have gained while going through this final stage of life.

 

[mysticunicorn66]

They do get quite nauseated with constipation. If sister is on hospice, they have patches that can be applied to the skin to help with nausea. Also, we will soon be facing the situation with my sister because she is at high risk for pneumonia to even get a feeding tube. They told me that they can keep her comfortable when she is no longer able to swallow. they told me that the can do injections under the skin, patches to the skin, and some meds will dissolve under tongue as well. Talk to them. The things that really seemed to get her bowels moving was lactulose by mouth, and they also gave her suppositories as well. A few times, though, we have had to manually disimpact her bowels. Have they tried manually removing some of the the backed up stool? Something too that they gave her by mouth that seemed to help move things along was Reglan. I have heard that it can take a couple weeks with no fluid/food before body functions cease, or so I have heard. Then again, that might be as individual as the rate at which ALS patient progresses. Hang in there.

 

[judyroyalglenn]

Sorry to hear about your sister's struggles! Just wanted you to know someone cares Sending up a prayer for ya'll!

 

[mysticunicorn66]

((HUGS)) to you. Not an easy road to travel for PALS or CALS. Prayers are being lifted up for you and your family.

 

[Jason's Dream]

Just wondering, does she have a cath bag she can plug her PEG tube in? When Jason got his PEG tube, he experienced extreme nausea, and so they plugged his PEG tube into a cath bag and opened the clamp for some of his stomach bile to drain out into the bag, but it did help with the nausea.

I am not sure I really know the answer to your question, but I wonder if this might help. My grandfather had sever alzheimers. He aspirated food or drink into his lungs and contracted pneumonia. My aunt did not want to d/c fluids but wanted the comfort meds for him so he wouldn't struggle for breath and that he would be comfortable. He slepted mostly once those decisions were made and he passed in his sleep within the week. My grandfather was 99 years old. I am not sure that this really helps, but I hope some how it does, and eases your pain.

*hugs*

 

[Jellycat]

Hi Griswald, I suspect there's no one fixed answer to your question, as you suggest. My dear mother had a tube which she used for all fluid & food for 16 months. Towards the end she couldn't tolerate anything through the tube at all. She would vomit and wretch for hours with the smallest amount. In her case she was extremely well hydrated and of good weight before we stopped tube feeding. Apart from this disease her body was quite strong. So, for her it was about two weeks before she passed away. I'm sorry you and your sister are facing this and pray strength on you both.

 

[Griswald 1]

Thanks so much for your replies. I have not posted in the past as I simply do not have time what with working two jobs due to this wonderful economy and my husband not working much as he is in the trades. I leave Illnois every Friday am and drive to NE Indiana to relieve my wonder young niece who is her caregiver during the week, then drive back Monday am in time to be at work to do it all over again. I have proven to myself however how true that song is: "He (she) aint heavy, he (she) is my brother (sister). I have been blessed to be able to spend these last months visiting her while she was able to communicate on paper at least. We are both at peace with what will be happening soon and she will be with our mom and my daughter in law soon.

God bless you all in your own journies. Your posts to others have been so heartwarming and it has helped my heart knowing that others are experiencing the same things. I know when our Kelly died of melanoma 8 years ago I joined their site so as soon as we got the ALS diagnosis this is the first place I sought out for other people's answers they found for their problems. It is always a better source for answer than those doctors who have not walked the walk. Thanks again and pray that her ending is brief.

 

[mysticunicorn66]

((Hugs)) for your niece too in this journey as well. I freaking loathe ALS and what it does to PALS and their families. It truly is a family disease. I feel for you as we are living this nightmare too.