I'm going to give you the male caregiver perspective. The system I have gradually developed to care for my wife has given her a quality of life that, I believe, would be hard for a woman to do for a male PALS. Before I answer your specific questions, fast forward through more than five years of various challenges to today and a day in our life. I believe this will give you an idea of how rewarding life still can be, on a vent, with feeding tube, unable to move any part of your body (other than the head, eyes, mouth), unable to speak except with a Tobii Dynavox and rudimentary spelling sheets. I'll then give you a look back at our journey and numerous important challenges encountered and considerations/decisions made along the way.
I had to quit work pretty early on, almost three years ago. I will share more about financial considerations later, but the only way for this to work for us, and for Nicole to have pretty decent quality of life was for me to care for her full time.
I usually wake up between 7:00 and 8:00am. I make some breakfast, read the paper, and relax a little before catching up on various ALS, home or personal responsibilities and preparing for the day. Nicole usually wakes up at around 9:30. At present she wakes anywhere from zero to three or four times in the night. Once or twice, for me to care for her for about 15-20 minutes, is the norm. Overall, I sleep quite well. I take 50mg of Trazadone.
Nicole sleeps in a hospital bed and I sleep on a fold-out love-seat sofa with twin mattress in what used to be our family room. That room has her bed, the love-seat, her very comfy (vibrate, heat) lift chair/recliner. She spends a fair amount of her day in that, other than when she transitions to the commode and back, or is in her wheelchair for an outing, which we do almost every day.
From about 9:30-10:30 we get things all prepped to move her to the side of the bed, position her feet on a pivot disk and then with a strong boost from an LPN, or Aide, or friend I stand her up and get her legs locked in one rather quick hoisting motion. I then pivot her to with her back to a very special Rifton HTS commode and set her down. (I wouldn't be able to do all of this without this specific commode) We then do the same process and transition my wife into the recliner to start her day.
Either I or an LPN feed Nicole Liquid Hope Organic formula by gravity feed through her feeding tube. Aides aren't allowed to feed her. When I have an LPN helping me, I take the time from about 11am to 12:30 to run errands, catch up on email, go for a run, shower, or various other necessary tasks. At about 12:30 I give the nurse a lunch break. If I have an Aide, or nobody, helping me for the day I am on 100% of the day and the Aide or friends are there almost exclusively to help me lift and transition about every 2 1/2 hours.
So, from 12:30 until about 1:30 I spend time with Nicole, chat, read to her, do devotions, etc. Around 1:30 it is time to transition to the commode again. Two days a week she will stay on the commode and we will roll her into the shower to bathe. She showers while on the vent and the ventilator sits on the toilet next to the shower area. She is typically back in her recliner for lunch those days by about 2:30 and after lunch we tend to go for an outing. On non-shower days, she will most often transition to her wheelchair for an outing around 1:30.
More to follow later. Gotta run...