- Joined
- Nov 18, 2014
- Messages
- 4,873
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- South
- City
- The Beach
Today was very sad for me. I attended an ALS support meeting via Zoom. The presentation was from a company that provided health care. When I asked them about the skilled care Medicare provides, they said they didn't take it and they didn't know anything about it. A lady from our chapter who works for hospice and helps with the meetings asked them if they would work with PALS to help locate affordable services. I asked them if they could provide me with their rates and they said the rates depended on where the PALS lived and couldn't even give me an estimate of a CNA.
I remember back when I first posted here we had a discussion about finding our own. I have the connection with the college. I put it out there at the meeting and they said they were working with the college. We have a few caregivers for hire in the area and I think they charge around $15-$20 depending on what service you need.
Being without a CALS and knowing nursing homes in my area don't accept ALS patients, even if they aren't on a vent has me wondering if I should start looking now. I can still take care of myself, my place is set up for either a ceiling track or hoyer lift but I've noticed much progression during the past six months.
I did meet a man who is also lower dominant and has been living alone for 11 years post-diagnosis. He is a vet so he will have good benefits to see him through.
On a positive note, Virgin River (Netflix) starts today. I just finished up The Man Who Fell To Earth and really enjoyed it.
I remember back when I first posted here we had a discussion about finding our own. I have the connection with the college. I put it out there at the meeting and they said they were working with the college. We have a few caregivers for hire in the area and I think they charge around $15-$20 depending on what service you need.
Being without a CALS and knowing nursing homes in my area don't accept ALS patients, even if they aren't on a vent has me wondering if I should start looking now. I can still take care of myself, my place is set up for either a ceiling track or hoyer lift but I've noticed much progression during the past six months.
I did meet a man who is also lower dominant and has been living alone for 11 years post-diagnosis. He is a vet so he will have good benefits to see him through.
On a positive note, Virgin River (Netflix) starts today. I just finished up The Man Who Fell To Earth and really enjoyed it.