- Joined
- Nov 12, 2015
- Messages
- 658
- Reason
- CALS
- Diagnosis
- 11/2015
- Country
- US
- State
- CA
- City
- San Diego
So we are on lockdown essentially all over California. I've been pretty much locked down for a month or so in any case with the exception of my art classes. It's such a worry; I go to the grocery store or pharmacy to pick up some things that my PALS wants or needs, and not everyone is observing social distancing. I had a kid buying a six-pack practically breathing down my neck today in line. I kept my nose and mouth in my jacket and stepped away as soon as I could. I feel a little crazy right now - buying canned goods or frozen things and dried beans. Advice from my husband was if he could walk or drive he would just stock up. I told him he had not been to the grocery store lately. There is nothing to stock up on. Yesterday I felt excited that I scored some yeast and 2 small bags of flour.
His caregiver is still coming over, she is about 4 months pregnant with twins. She told me yesterday she will need to leave us in early June. If I want a break I'll have to find another caregiver, which also concerns me in these circumstances. I guess I have a couple of months to think about that. She's been happily locked down as she is concerned about her pregnancy.
We did not go to the pulmonologist appointment on Monday so I don't know what they would have said to him. He doesn't have a feeding tube; that was my next immediate concern. He is still eating now and doesn't want to talk about it. He keeps telling me he just wants to get well. Maybe I'm thinking too far ahead, but I'm concerned about what I do if my PALS needs hospice care. He is definitely struggling to breathe when he is not on bipap. He is on bipap 24/7. If this drags on, who knows?
As if ALS is not enough. I suppose the lockdown isn't much different from how we have been living lately in any case. I don't mind as long as I can do a few things here that feed my spirit. Just concerned about my PALS.
His caregiver is still coming over, she is about 4 months pregnant with twins. She told me yesterday she will need to leave us in early June. If I want a break I'll have to find another caregiver, which also concerns me in these circumstances. I guess I have a couple of months to think about that. She's been happily locked down as she is concerned about her pregnancy.
We did not go to the pulmonologist appointment on Monday so I don't know what they would have said to him. He doesn't have a feeding tube; that was my next immediate concern. He is still eating now and doesn't want to talk about it. He keeps telling me he just wants to get well. Maybe I'm thinking too far ahead, but I'm concerned about what I do if my PALS needs hospice care. He is definitely struggling to breathe when he is not on bipap. He is on bipap 24/7. If this drags on, who knows?
As if ALS is not enough. I suppose the lockdown isn't much different from how we have been living lately in any case. I don't mind as long as I can do a few things here that feed my spirit. Just concerned about my PALS.