Advice on In-Home Care

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New member
Sep 16, 2021
Loved one DX
Hi everyone. My PALS is recently diagnosed with Bulbar ALS. She is 79 and lives alone. I’m her niece and live out of state. Her two children live closer but cannot live with her to take care of her.

My PALS has been unable to eat more than a couple bites of food a day for over 6 weeks. She is very weak. I’m sure she’s dehydrated. She is hoping to get a feeding tube ASAP if cleared for the procedure (her breathing is not great). She has a lot of difficulty speaking.

My PALS was given a BIPAP which she’s supposed to be using at night, but can only tolerate it for 5 minutes at a time a few times a day. She also has a cough assist machine that she tried once and hated.

My question is, what type of home healthcare should her kids be looking to get for her? A 24 hour caregiver/personal aide (non-medical) was supposed to start soon. But it seems that she needs more than someone to help her bathe and do light housekeeping. If she’s able to get the feeding tube, she’ll need someone familiar with those to feed her. I would think she needs someone familiar with the BIPAP and cough assist to encourage her to use those and ensure she’s using them properly. Also someone who can check her vitals.

Do those people (not family members) exist? What should we be looking for in a home-HEALTH care aide.

Thanks in advance.
Very sorry to hear about your aunt, Rose.

If you have the financial wherewithal, they certainly exist. But almost anyone in that category would need to be <self, if they can read/comprehend manuals> trained up on the BiPAP and Cough Assist, and later, feeding tube. So they would need to have a little more snap than an ADL-type person, you're right. But the title is on the order of home health aide, just not every HHA will make the cut.

As always, I would recommend hiring yourself (or her kids on the scene) before paying the extra that an agency will take. You can write postings and interview as well as they can. If you are open to it, a daytime person and night-time person or some students trading shifts might be needed rather than an all-in-one.

Let me know if she or whoever's responsible for the BiPAP would like help on settings. There is almost always a way for her to be comfortable using it for the hours she needs, that will also help her potentially leverage the Cough Assist.

She can get a tube with weak breathing, but things could very easily go south without BiPAP support. Still, if she's dehydrated and malnourished, that trumps all else and is not the best time for any interventional procedures. I would ask her doc about ordering a home health IV nutrition/hydration regimen to get her stronger to use BiPAP and get the tube placed.

Thank you for trying to look out for her.

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Thank you so much for taking the time to offer this much-appreciated advice. I agree that hydration/nourishment are acute needs. My aunt actually went to the hospital this morning due to low blood pressure (her part-time home health aid called an ambulance) and is getting IV fluids. The doc said they would likely discharge her tonight or tomorrow if her bloodwork and urinalysis come back normal. If she’s suffering from severe dehydration and mal-nourishment, isn’t sending her home without any further advice or intervention a death sentence? I appreciate your suggestion of IV fluid and nourishment. I was going to ask the doctor about the IV fluids at home, but didn’t know nutrition could also be given.

Regarding costs, she does have long-term care insurance which is supposed to start picking up home care in about a month. Until then she’s ok paying out of pocket if needed.

I greatly appreciate your offer of assistance on the BiPAP settings and would like to take you up on it. I’ll try to get the info on the specific machine make/model and what settings it is currently on tomorrow. My aunt doesn’t know anything about the machine and right now it’s her daughter who is assisting her using it.

Thank you again Laurie for your advice. Information is truly a godsend at this time.
Question on BIPAP: my aunt (PALS) was told that she couldn’t adjust the settings on her BIPAP, that they were set by her doctor and couldn’t be changed. That doesn’t seem right based on other threads I’ve read here. Is it perfectly reasonable for us to challenge the doctor on this and insist on being able to make adjustments as necessary?
False, territorial, nonsense, dating back to the pre-Internet days and paternalistic health care, not to mention a limited number of respiratory therapy places in colleges. If you wouldn't "set and forget" a microwave or a cell phone, why would you a machine that helps a PALS breathe? No need to challenge anybody; just do it, as many here and elsewhere have done. Some RTs will even say "it's illegal." It's not.

If it helps, the initial settings are based on an algorithm that wasn't written with ALS in mind. 95% of those I help therefore begin with pressure/volume settings that are too high for the limited musculature someone has left, and most aren't synchronized to the person's natural breathing, either.

As for the dehydration, well, yes. IV nutrition isn't a long-term solution but can help in the short-term, esp. since she needs fluid anyway.
Rose, sorry about your aunt.

When we started needing additional caregiving support we contacted our local ALS Association for recommendations on caregivers. I hired a highly recommended woman. She was with us for a year and left when she was pregnant with twins. She referred me to our next caregiver. Agencies disappoint me as they are expensive and tell me they can't help with bipap or feeding tube, which are pretty fundamental to ALS care.

My late husband had difficulty getting used to the BiPap. He "trained" himself by using it during the day while watching sports or a movie. It made it much easier to transition to using it while sleeping.

I live in a city that has a good nursing school program. Many of the students are available to work in shifts around their class schedules. Also, if your aunt has extra bedrooms, if she lives in an area that has a nursing school program, she can offer free rent and the long term care policy amount in trade for care from several students that can split shifts.
Re long term care insurance. The policy may insist that the people they reimburse for be licensed / through an agency. My sister’s policy did. Policies and benefits can vary a lot so it is something to check.
Nikki makes an excellent point. Still, agencies vary so it's worth interviewing a few to get the right one, if that's the mechanism you need.
I was shown a way to “ramp” the biosphere pressure gradually so ask the person who set up the machine how to do this. I have a Triligy machine which is said to be better than others.
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