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NottheStrongOne Asked September 2021

How long? Any advice, reassurance or help?

Hello. I am helping my father care for his live-in companion. She has a blood cancer, dysphagia (cannot swallow anything now), COPD and is on oxygen, is 5'0" and weighs less than 52 pounds. She has had a PEG tube since June but now anything that goes in either a) leaks out or b) she vomits out. She has refused food and medication the last two days. We haven't been weighing her diapers - just learned about doing that on here.


We will be trying to get the hospice process going tomorrow. I am not sure what to do now but wait. She asks for water and we give it but she can't get much down due to the dysphagia - should we be giving water in the PEG tube or no? (We have been but don't want to make what is coming harder).


Everything I read it seems like she would have weeks to go before she passes, but at 50# weight, frankly I am not sure how she is still with us. Any advice, reassurance, help is appreciated.

Midkid58 Sep 2021
I'm sorry for what you are all going through. I can't imagine she can last much longer....and I admire you for trying your best to care for her.

Have you tried simple popsicles? They melt slowly and are cold and refreshing. When dad was alert, he was thirsty but would vomit up anything he ate or drank. I hit upon the idea of popsicles and that's all he 'ate' for the last week of his life. I actually enjoyed the times I went to see him and fed him a popsicle. It took TIME, which is what I personally needed to have the strength to deal with losing him.
NottheStrongOne Sep 2021
Thanks for the tip. We were doing popsicles three weeks ago. She hasn’t asked for them lately and when we do she doesn’t want them. Currently some ginger ale is her sip of choice. We weighed her diaper today. About 4 oz over the last three days.
MJ1929 Sep 2021
I can't speak to the feeding tube, she might need something to keep her mouth moist. There are gels you can get at the drugstore to keep the mouth from drying out. There's also a mouth rinse, but we didn't find it lasted long enough to be of much use.

Poor thing, I can't imagine she'll last long. You can call a hospice company 24/7, so don't wait until tomorrow.
NottheStrongOne Sep 2021
I called a hospice company on Friday and I was told they need paperwork from her PCP. I called them and of course they didn’t call back. I will be starting bright and early on them tomorrow.

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funkygrandma59 Sep 2021
I'm glad you're getting hospice involved now, as better late than never.(You probably should have months ago)
Also perhaps try thickening her liquids with the product Thick it, as that should help her be able to swallow better.
Eventually she will no longer ask for drink, but while she is I would try my best to give her something thickened.
It certainly sounds like death can't be too far off, and I commend you and your father for caring for her in her final days.
I wish you all God's strength and peace in the days ahead.
NottheStrongOne Sep 2021
I tried to get hospice when she got the tube but my father flat out refused. He was refusing as late as last week. Finally he has accepted it and we are able to move forward.
GardenArtist Sep 2021
I am so sorry to learn about this very sad situation, but admire you and your father for wanting to find the best care for his companion.

My father had dysphagia, and it affected his ability for intake during his last weeks.   Water was administered only by little drops in a spoon.   (He didn't have a PEG tube so that wasn't an issue.)

I wouldn't take the chance of adding water through a PEG tube, especially at this stage of end of life.    But I think you are right in getting hospice on board ASAP so that these kinds of questions can be raised with medical people, as opposed to other caregivers.  

I wish you, your father and his companion as much peace and solace as is possible during these challenging times.

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