Need advice...

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New member
May 11, 2022
Hi All, I haven't posted in awhile but I have been grateful for those that have. I read through the threads and have learned a lot in trying to help my wife who is nearing the 2 year mark of bulbar onset. So far, she has lost her voice and swallow functioning (she has the PEG), but she remains mobile with use of all her limbs and hands but with about 40% of the strength she once had. She is also about a 40% on the breathing respiratory function testing. We recently got botox injections in her salivary glands which has helped with excess saliva, but her phlegm issues remain as she constantly struggles to clear aspirating phlegm. She has the cough assist, suction and the bipap machines. So far she is uneasy using the bipap machine at night while sleeping. I am still working on that trying to convince her :)

Recently I contacted hospice to set up a plan just in case. They have three different modes: Home Health Nurse, Palliative Care and Hospice. I have talked to all three but still trying to see which one would be best in our case. My wife is still mobile so she can visit Dr offices and she can still manage daily activities such as feeding herself and cleaning. But...I worry about a specific scenario that maybe some of you can help me with:

I travel for work a few times a month for 3-4 days at a time. Murphys Law would suggest that on day 1 of my trip, my wife wakes up with a fever of 102. She will not tell me about it because she may be assuming this is her quickened off ramp to the disease. If she were to tell me about it I would launch the fleet to help her, but that would not be her wish. I think she would rather suffer and hope the offramp could be finalized before I return home. Since we only text, I would be unable to see how bad she is until coming home after 4 days. I would imagine she would be in terrible shape at that time and would need an ER visit. Her wishes for medical intervention (Living Will and POLST) stop at antibiotics and comfort care; no ventilation or machines. If I bring her to ER I imagine they will stabilize her with whatever they need to including machines. Sedate her, and then look at me for what I want to do.

Her wishes are to fight whatever infection she were to get at home and not in the hospital. Maybe IV antibiotics, fluids and then comfort care if it got to that point. My dilemma is that this sounds like hospice care but then we may need to discontinue our ALS clinic which seems premature at this point. Palliative says it take 72-96 hours to be seen after initial call. In my case of coming home from a trip to find my wife in trouble it would be a week before she could see a NP at the house, then she would have to initiate hospice.

How do I execute a back up plan in case of an acute illness (COVID, aspirational pneumonia, flu) for a PALS that is currently mobile, not receiving home health checkups and basically independent, other than struggling with bulbar progression?

Thanks so much sorry it was a long post!

Scott. I am new to ALS as my husband's care giver. He also has bulbar onset. Diagnosed in summer 2022. His ALS is progressing rapidly. I am sure people here are more knowledgeable than I am. I just wanted to give you and your wife a virtual hug. Peace be with you and the strength and wisdom to care for her and yourself.
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Scott, I am in GA and have also wondered how we would proceed if there were an infection. We also have a POLST.....which is a Physcian Order for Life Sustaining Treatment. We have been told by Palliative Care that since this form is signed by a doctor it carries great weight...more so than the Advanced Directive....this is what we were told and this may only apply to GA. So I have hopes that if my PALS were to have a stroke or an infection this form would be honored in the ER. But who knows how this would would really play out.
Hi, Scott. If her POLST is on the fridge and it says do not transport, which you are implying, and the EMTs are not out to lunch, she is not going to be transported unless she says to, your wishes notwithstanding. She can wear a pendant or have her phone at hand to enable her to call a trusted friend or relative that knows her wishes, if things go south in a hurry, she falls, or something like that.

Honestly, if she needs BiPAP in sleep and isn't using it, the most likely scenario is she chokes in her sleep. Let me know if there are specific issues with comfort or settings that I can help with, for her to be able to use it when she needs it.

Anyway, let's say she needs IV abx. It doesn't require that she be in palliative care or hospice to get home health care. In fact, hospice isn't going to administer IV abx and you wouldn't put someone in palliative for an acute illness as you describe.

But her PCP can write for IV abx through home health and can do this empirically through telehealth in some circumstances. The ALS clinic doesn't need to be involved at all, and probably won't be. But you don't have to give them up until she is on hospice.

In a situation where she can't get to her PCP -- let's say she's too sick to go out and meet a Lyft -- I would be looking now (pre-need) for an NP that does house calls, who can draw and send out labs for her, and put that person into her phone. NPs who specialize in senior care and direct primary care docs are the ones most often in this category. But I don't know what's available where you live. Your PCP may have notions on this.

In case you haven't guessed, having a good PCP way trumps the clinic for all the scenarios you raised. ALS clinics are not going to do pneumonia, flu, or Covid.

Of note, even LabCorp draws labs at home now in some markets. You can check and see if that applies in yours.

I would consider a MedicAlert bracelet so you would be called right away from the ED if her distress was witnessed. On the bracelet, you can include ALS, use of BiPAP, loss of voice, how she communicates, etc. She should have a wallet card with the same info, a laminated paper on the fridge with the same info, and maybe same on the front door, and of course your contact info.

She may want to designate an alternate health care proxy besides you, for when you are not there and she wants to make sure her wishes are respected. She can enter the POLST, health care PoA if they have that in Georgia, and proxy info in MyChart or whatever her EMR is,

I have attached the emergency protocol a couple of us put together a while back. She could carry/display this as well. (RIP, GregK!)

That brings us to her wishes, which may not be the same as yours at crunch time. I very much hope you and she can have a conversation that gets you on the same page. Very few PALS make it out of the hospital if transported for respiratory insufficiency, not only because of the complexity, but hospitals are even more dangerous for everyone these days.



  • ALS emergency protocol.pdf
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Wow! Thank you so much Laurie! This is EXACTLY what I am looking for. You are a wealth of fantastic information!

Hi Mary, we have a NP coming today to the house. I wanted to run some scenarios with her to make sure we are on the same page. I will post what her feedback is too.
Our clinic (Duke ALS) continues to work with patients in Hospice care. (We met yesterday and asked that question.)
We also learned that some Hospice providers enable patients to continue BiPap or Trilogy, and some don't.

I hope that none of your fears come to fruition.
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