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GilWest

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Mar 1, 2014
Messages
359
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
WV
City
Southern
I know not everyone with a PEG has to pay $35 hour for care. Mom is bedridden, with PEG, and currently in a nursing home. She wants to come home and I want her to, also. However, none of the local home health agencies will touch her unless we use an LPN at a cost of $35 an hour to sit with her at home. I know everyone with ALS does not have to live in a nursing home. Any suggestions?
 
None of the home health aides my sister has can touch the PEG. Can you feed at night? Are you there ( or another family member?). You don't need 24 hour feeding.
 
I am here, but all I hear is the word "liability" from the agencies. Could a home health aide "sit" and maintain/care for mom, but not bother the tube? How would emergencies be handled if the feeding pump stops working in the middle of the day?
 
You don't have to have the feeding running during the day unless there is something weird going on with your mom. My sister started feeding over 14 hours now it is over 10 hours. When the aide is there the tube is capped and no pump. Then she hooks up in the evening when family are available to do it. If she is 24 hour feed in nursing home work with them to transition to a schedule that will work at home
 
I was going to suggest using a pump and operating it at night. I do syringe feeding during the day, on my own. My little sister had to have one a few years ago for a different reason and they hooked her up at night to a pump and let it run overnight. She too is totally disabled.
 
You don't have to have the feeding running during the day unless there is something weird going on with your mom. My sister started feeding over 14 hours now it is over 10 hours. When the aide is there the tube is capped and no pump. Then she hooks up in the evening when family are available to do it. If she is 24 hour feed in nursing home work with them to transition to a schedule that will work at home

Does she get hungry while not having the pump hooked up through the day? If we did not tube feed through the day, mom would not get anything to eat the entire time I am at work. Mom's continuous feeding is to try and help her gain weight I assume.
 
It is like having your feeding reversed in time. I go all night without eating my sister goes all day. She gets her calories in the time she is eating my sister was emaciated when she got her tube she has gained 16 lbs with the overnight feeding will your mom be a little hungry when you get home? Maybe. Are you not hungry for breakfast? It works for most people. It is what we were recommended to do even without the aide situation being raised to the ALS clinic. They said it was what most of their patients did
 
If you hire aides on your own, then you and not the agency decide what they can do. Also, you have more flexibility in terms of credentials. Depending on your state, CNAs, NARs, NACs, HHAs and [pre- or in the professional program] OT/PT/nursing students, just to name a few, are all possibilities. The coursework + clinicals for CNAs, for example, is only of several weeks' duration and is not deep -- I scored 100% on the practice written exam off the top of my head, and the clinical exam is, shall we say subjective, based on several accounts I've heard. So there's no magic in the prep -- it's in the person. You could even find someone you know/like/have referred to you and pay for their coursework, if/as appropriate. Or just train them up yourself. If s/he wants to learn and do the right thing, shows up and works hard, you are there.

YMMV, obviously, but in interviewing/trying out a broad range of assistants recruited via various means, we have found that young students are a better fit for us, and you are not going to find them at agencies. We have tried out some people that were previously/currently working through agencies as well, and they just weren't for us.

I'm not saying that everyone who works with an agency is so mediocre that s/he needs an agency to get work, but there are plenty of good people who, all else being equal, prefer not to give a good chunk of their earnings to the middleman. And you pay extra for that that agency cut as well.

For those that have an agency they like and can afford, of course, whatever works. The foregoing is directed toward those for whom that is not the case.
 
I use both. An agency for helping with the hoyer lift. My pals is on a vent and like you said they are not allowed to touch the vent or peg. I found someone who has experience with both the vent and peg and I hire her once a week so I can get out of the house. She has a bad back so the hoyer lift is out of the question for her. With that being said, I am pleased with both. There is a web site care.com that have CNAs and nurses. You can also do a background check.

Debbie
 
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