- Oct 6, 2006
- saratoga springs
Well we met with hospice last week. Definitely lots of emotions gearing up to our initial meeting. We had tons of questions on what hospice would mean for our family. Our biggest concern is not feeling in control because Hospice takes over as a sort of case manager. We will still have our same GP, be able to go to the ALS center. They also approved for my hubby to attend his pool therapy two times a week. My hubby made it very clear with the nurse that he is not giving up and still plans on living. We were upset that hospice does not cover rilutek. We have some stockpiled. My hubby really wants to stay on this medication. Not sure how we are going to handle this situation. They will also cover the bi-pap machine cough assist machine, and we are borrowing the vibration vest. Oh, and they cover the formula for the tube feed. If a new miracle drug comes out tomorrow we could be discharged from hospice. They have a nurse on call 24 hours a day and can send an aide out a couple hours a week. They offer massage therapy, music therapy, riki, and other sorts of relaxation therapy. Hard to find any negatives except for the fact that we have to even be considering hospice at all. So, I will call them tomorrow to let them know if we are going to sign the dotted line. Good Night All!