Erika
Distinguished member
- Joined
- Sep 21, 2016
- Messages
- 175
- Reason
- CALS
- Diagnosis
- 06/2016
- Country
- US
- State
- Arizona
- City
- Mesa
The nurse that came for the initial evaluation was super nice and explained how my mom would get all the equipment she was already using, plus what ever she needs to be comfortable including a low air loss mattress. I was so relived. She also said they have a team who specialize or have experience with ALS, and how there are several ways to help her with air hunger and to keep her comfortable in the end. Basically, that mom would be in great hands. Once shes admitted, a social worker will come and the medical equipment will be delivered within a day or two. Shell also have a Spanish speaking nurse and nurse assistant. Her neurologist will also continue to follow her medical care. A very informative first interview. One thing I forgot to ask was if her formula would be covered. Guess I can ask tomorrow.
I started this hospice process thinking it's the next best decision, from an insurance and financial point, and not because I thought it was the end. But in the last few days she seems to be on yet another decline and I wonder if we are closer to then end than we think.
*She has trouble swallowing (almost choked on dinner the other day)and speaking. It's harder to understand what she says.
*Phlem is becoming an issue and her saliva begins to pool on the corners of her mouth.
* She gets fatigued just from sitting up on her chair or speaking.
*She cries more often. We all do.
*Her "good" hand is almost gone and her head feels heavier every day.
We continue to encourage her to use the cough assist, bipap and "eat" through her PEG. Some days are better than others. She started taking nudexta 2-3 days ago for some of the crying and saliva build up. Could this be making her feel so tired and weak too?
On a happier note, two of her sisters are coming to visit next week, hope that lifts her spirits. Sooo much more going on. This is the short version.
My mamma... I know the end will come, I just don't want her to suffer.
Thinking of you all. ♡
-Erika
I started this hospice process thinking it's the next best decision, from an insurance and financial point, and not because I thought it was the end. But in the last few days she seems to be on yet another decline and I wonder if we are closer to then end than we think.
*She has trouble swallowing (almost choked on dinner the other day)and speaking. It's harder to understand what she says.
*Phlem is becoming an issue and her saliva begins to pool on the corners of her mouth.
* She gets fatigued just from sitting up on her chair or speaking.
*She cries more often. We all do.
*Her "good" hand is almost gone and her head feels heavier every day.
We continue to encourage her to use the cough assist, bipap and "eat" through her PEG. Some days are better than others. She started taking nudexta 2-3 days ago for some of the crying and saliva build up. Could this be making her feel so tired and weak too?
On a happier note, two of her sisters are coming to visit next week, hope that lifts her spirits. Sooo much more going on. This is the short version.
My mamma... I know the end will come, I just don't want her to suffer.
Thinking of you all. ♡
-Erika