Hi ... I'm primary caregiver for my husband, who has Parkinson's and other problems. I'm the one with ALS, but he's in worse shape than I am, so fortunately I am still able to physically help him and manage things (for how long, I don't know). Right now he's fighting kidney failure (not part of Parkinson's) and is bedridden, unable to sit up most of the time.
We had an emergency two weeks ago when he fell in the bathroom blocking the door, and I couldn't get to him. Used my "medic alert" button for first time and paramedics arrived in 10 minutes and got him to the ER. They kept him for 4 days because he is so debilitated. His kidneys are right now at the point where they need to consider dialysis or transplant ... I don't think he could survive a transplant, and I don't think they'd put him on the list because of his Parkinson's ... but perhaps urologists can stent around his kidneys, which are blocked. We'll know Friday what's in store.
I have a caregiver 5 afternoons a week, thanks to long term insurance and what's left of our savings, and she is making all the difference. I can't push him in his wheelchair anymore with my arms, but can if I stand pressing against the back, and push the chair with my right leg. We side-step through the house at a snail's pace. I'm not supposed to try to push him according to my neuro, but life goes on, ALS or no ALS. We have to do what's before us to do.
I get a lot of information from this part of the forum and identify with both caregivers and caregetters laments. He refuses to eat (he is so sick, I understand completely how he feels about food), and I seem to spend half the day coaxing him to get his supplements down. I get angry and sad alternately (or together), and find myself using the self-pity card with him sometimes ... ("You know, I'm not feeling so hot myself, so drink the freakin' Ensure so I can go lie down.") I've solved the appetite issue partly by giving him about 4 oz of supplement every hour. He can manage that.
Hopefully, if his kidneys improve, his appetite will improve. If it doesn't, then we'll probably go for a feeding tube for him, too, which is fine, as I'm a pro with that now.
Seeing Parkinson's up close has been a good reality check on ALS. ALS is a nasty, nasty disease, but there are other neurological conditions that are really nasty too. I believe that all caregivers should go directly to Heaven, do not pass Go, do not collect $200. I include myself in that crowd.