BU99
New member
- Joined
- Nov 19, 2016
- Messages
- 1
- Reason
- Loved one DX
- Country
- Uni
- State
- IL
- City
- winfield
Hello, I hope you can help me, and I apologize for asking such a difficult question, but I feel very overwhelmed right now. My mother was diagnosed in July with extremely progressive ALS. When she was diagnosed her lung capacity was at 30% and has diminished considerably since then (while probably not accurate her last test in September suggested it was around 12%).
A month after her diagnosis, she received a g-tube for liquids, medications, and occasional feedings (she really didn't want it, but needed it for hydration). She wants no extreme interventions, like a ventilator and only uses her bipap at night. She refuses to it use during the day.
Currently, she is in hospice and living at home with full time caregivers (she's single, so the caregiving situation has been extremely difficult). This past week I thought she might not make it to Thanksgiving because she developed a horrible, rattling cough, but it turns out she is just aspirating her saliva (even with the use of atropine and other drying medications).
I talked to her hospice nurse and the local ALS nurse, and they asked what her views on stopping the feedings were. She wants to continue feedings, even though she can only do two a day because of fluid retention.
My question is this - if she continues the feedings, even at just two a day? How much time could she have? Her quality of life has diminished considerably, and she's about to start morphine three times a day (vs. morphine at the start of a coughing spasm). This whole situation has been absolutely devastating, and I hate seeing my beautiful mother like this.
Obviously, we must listen to her wishes and continue her feedings, but I'm so worried and upset. Can anyone give me guidance on the next few months, weeks, days? Thank you for your help and concern.
A month after her diagnosis, she received a g-tube for liquids, medications, and occasional feedings (she really didn't want it, but needed it for hydration). She wants no extreme interventions, like a ventilator and only uses her bipap at night. She refuses to it use during the day.
Currently, she is in hospice and living at home with full time caregivers (she's single, so the caregiving situation has been extremely difficult). This past week I thought she might not make it to Thanksgiving because she developed a horrible, rattling cough, but it turns out she is just aspirating her saliva (even with the use of atropine and other drying medications).
I talked to her hospice nurse and the local ALS nurse, and they asked what her views on stopping the feedings were. She wants to continue feedings, even though she can only do two a day because of fluid retention.
My question is this - if she continues the feedings, even at just two a day? How much time could she have? Her quality of life has diminished considerably, and she's about to start morphine three times a day (vs. morphine at the start of a coughing spasm). This whole situation has been absolutely devastating, and I hate seeing my beautiful mother like this.
Obviously, we must listen to her wishes and continue her feedings, but I'm so worried and upset. Can anyone give me guidance on the next few months, weeks, days? Thank you for your help and concern.
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