Respiratory distress

[Mageejj]

Hello everyone,
We placed my father in the nursing facility last Wednesday. He was getting weaker by the day and losing his ability to walk. He required assistance with all aspects of his life. My parents house was no where near equipped for his care. We found the best place with super friendly staff and happy residents. I am pleased with the care he has been given and I'm relieved that my mom no longer has the stress of primary caregiver. She was not handling it well. We have been watching him like a hawk in the nursing home, talking to all the nurses, aides, directors, etc. he seems to be content there. The FTD has totally taken away his ability to communicate now.
Yesterday, when I was visiting, he seemed to be breathing very deeply ( Just like he does when sleeping) while resting watching TV. In the evening the nurses found him slumped in his chair gasping for air. They sent him the the hospital immediately. They did bloodwork and a chest x ray and said he was fine. They put him on oxygen and his breathing eventually returned to normal. This morning when he woke his O2 sat was low so they put him on oxygen again. When I got there it looked like he was having difficulty breathing(breathing deeply) again.
He has a ventilator/bipap that he barely will use. Thanks to the FTD. Our respiratory therapist said we shouldn't use oxygen without the ventilator so I had the nurses at the home add oxygen to it and put it on him this evening. I'm hoping he will improve with this. I'm afraid these are signs that respiratory failure is near. Does anyone have a similar experience? Should we try to force him to wear the ventilator? He has a DNR. Should we call hospice in the nursing home? Are we nearing the end?

 

[lgelb]

Unless he has some other lung disease, it probably was the ebbs and flows of ALS that improved his sats/breathing, not the O2, which only adds to CO2 overload, esp. as you say w/o the BiPAP.
If he has a DNR, that does not sound like he would want you to force the BiPAP on him. It is true that without the BiPAP, with or without O2, his life will be shorter. With a DNR, the focus has shifted to quality as well as duration of life. Is he visibly distressed when the BiPAP is placed? Does he try to remove it? These are the kinds of questions to consider in terms of what is force and what is assistance. One compromise might be to try it when he goes to bed; if he tolerates it then, he might feel better about it during the day. Gasping for air is not pleasant, either. If he is experiencing frequent air hunger, there may be a role for opiates to relieve that. I'm not sure if that's what you're describing.
Also not sure what his sats and measures of respiratory function are, so not clear if this is "the end." You can certainly ask his primary doc at the home for more of a prognosis, and whether a referral to hospice is indicated. I would also chat with the nurses and aides as you have been doing, about what they feel is going on.
Finally, this may be a time to take stock of his quality of life in the home, if there are any activities/times/people he seems to enjoy, and gearing treatment toward those objectives. If not, or as that response declines, that is a cue to be less aggressive and more palliative in treatment. It sounds like you have been very diligent and conscientious in evaluating the best options, and your dad is lucky to have you around.

 

[Katie C]

I would definitly talk to your hospice nurse. I agree it sounds like maybe it's time to start the morphine to ease the air hunger.