wndshr
New member
- Joined
- May 11, 2022
- Messages
- 5
- Reason
- CALS
- Diagnosis
- 07/2021
- Country
- US
- State
- GA
- City
- CUMMING
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
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