pdcraig
Distinguished member
- Joined
- Mar 2, 2013
- Messages
- 101
- Reason
- Lost a loved one
- Diagnosis
- 09/2012
- Country
- CA
- State
- ontario
- City
- oshawa
It's been a long time since I last posted. My PALS is still hanging in, defying all predictions. It's sometimes hard to believe it's been over 5 years.
He's reached the point where swallowing is a real issue. No PEG, he won't consent. He's saying he is choking on his saliva all the time. When I suction him, I'm getting less that a half teaspoon at a time. He's constantly scraping his tongue with his teeth to try and get rid of something no one can see.
I'm wondering if this is more the muscles in his throat and tongue are weak enough that they feel differently. He has obstructive sleep apnea so there was muscle weakness even before ALS.
I'm asking because it will mean a different approach to try making him more comfortable.
He has recently been assessed as palliative rather than "palliative" so he's getting something to dry his saliva. It helps, but he still feels like he is choking. Any thoughts?
Now for the ramble.
I am so tired. I didn't know it was possible to be this tired and still function. And sad and frustrated and scared and lost, well, I'm sure you get the picture.
It seems like it's been a free fall since the holidays. Nothing seems to make him comfortable or happy anymore.
i know that I should be grateful that we had so much more time together than we thought, but, I'm not ready for this next part. I can't seem to find grateful anywhere.
i've never really thought of him as sick until now. Everything was just our new "normal". This is different. it feels like I really am going to have to say goodbye this time. We're not going to continue to beat the odds.
We'll be celebrating 20 years together on Wednesday. Yes, we met on Valentine's Day. The thought that this will be the last one we have together is heartbreaking.
Every conversation seems to be about him dying, I've been on the edge of tears for weeks. Can't seem to get my feet back underneath me and just make the most of what time we have left. It feels like all I have left is this deep in the bone sadness.
We normally watch movies on Saturdays. I set up a projector in the auditorium, make hot chocolate or tea and we have the evening to ourselves. He wasn't up to it tonight, I can't help but wonder if this is one more last time.
I guess only time will tell.
Paul
Prince of Persistance
--o0:neutral:0o--
He's reached the point where swallowing is a real issue. No PEG, he won't consent. He's saying he is choking on his saliva all the time. When I suction him, I'm getting less that a half teaspoon at a time. He's constantly scraping his tongue with his teeth to try and get rid of something no one can see.
I'm wondering if this is more the muscles in his throat and tongue are weak enough that they feel differently. He has obstructive sleep apnea so there was muscle weakness even before ALS.
I'm asking because it will mean a different approach to try making him more comfortable.
He has recently been assessed as palliative rather than "palliative" so he's getting something to dry his saliva. It helps, but he still feels like he is choking. Any thoughts?
Now for the ramble.
I am so tired. I didn't know it was possible to be this tired and still function. And sad and frustrated and scared and lost, well, I'm sure you get the picture.
It seems like it's been a free fall since the holidays. Nothing seems to make him comfortable or happy anymore.
i know that I should be grateful that we had so much more time together than we thought, but, I'm not ready for this next part. I can't seem to find grateful anywhere.
i've never really thought of him as sick until now. Everything was just our new "normal". This is different. it feels like I really am going to have to say goodbye this time. We're not going to continue to beat the odds.
We'll be celebrating 20 years together on Wednesday. Yes, we met on Valentine's Day. The thought that this will be the last one we have together is heartbreaking.
Every conversation seems to be about him dying, I've been on the edge of tears for weeks. Can't seem to get my feet back underneath me and just make the most of what time we have left. It feels like all I have left is this deep in the bone sadness.
We normally watch movies on Saturdays. I set up a projector in the auditorium, make hot chocolate or tea and we have the evening to ourselves. He wasn't up to it tonight, I can't help but wonder if this is one more last time.
I guess only time will tell.
Paul
Prince of Persistance
--o0:neutral:0o--