Jackfishem
Member
- Joined
- Dec 29, 2015
- Messages
- 22
- Reason
- Lost a loved one
- Diagnosis
- 12/2014
- Country
- US
- State
- LA
- City
- Lake Charles
I wrote this weekend about mom having an indentation above her collar bone when she inhales. Since then, I've found out that this is called tracheal tug or suprasternal retractions. It's a sign of respiratory distress.
Mom was dx with FTD in early 2014 and ALS in late 2015. She's got restrictive lung disease, which makes it hard to exhale, and COPD, which makes it hard to inhale.
Lately, she's been eating less, been more tired, and now has the "tugs". I assume this is just the next phase of disease progression. I'm questioning if this is the beginning of the end -- the last phase. Do any of you have experience with this situation? I want mom to be comfortable -- we've had her on hospice since January. Unfortunately, I think the FTD keeps her from making decisions that can give her lungs a break -- she refuses to use a wheelchair and prefers to walk everywhere; she refuses to use her bipap during the day, even when she is short of breath. I just don't know what to do. It's so hard to just stand by and watch. It's even more difficult when the hospice group has very little experience with FTD and ALS separately and pretty much no experience with the diseases together. I feel like I'm on an island.
Anybody out there have any words of wisdom, encouragement, experience?
Mom was dx with FTD in early 2014 and ALS in late 2015. She's got restrictive lung disease, which makes it hard to exhale, and COPD, which makes it hard to inhale.
Lately, she's been eating less, been more tired, and now has the "tugs". I assume this is just the next phase of disease progression. I'm questioning if this is the beginning of the end -- the last phase. Do any of you have experience with this situation? I want mom to be comfortable -- we've had her on hospice since January. Unfortunately, I think the FTD keeps her from making decisions that can give her lungs a break -- she refuses to use a wheelchair and prefers to walk everywhere; she refuses to use her bipap during the day, even when she is short of breath. I just don't know what to do. It's so hard to just stand by and watch. It's even more difficult when the hospice group has very little experience with FTD and ALS separately and pretty much no experience with the diseases together. I feel like I'm on an island.
Anybody out there have any words of wisdom, encouragement, experience?