WOW! My heart goes out to all of you!
I was my husband's main caregiver for 3 years while he LIVED with ALS.
But again, the key is to LIVE with ALS. I know how hard that sounds, but you have the choice to let it get you down, or fight it head on.
My suggestions are to get your loved ones out of the house as much as you can. Go to the mall, the park, the lake, the airport, playgrounds, the zoo, whatever. Just allow them to sit and watch. Use painkillers if they help.
They will come home tired & sore, but rejuvenated with wonderful thoughts, and together you have built precious memories. That is what will keep you going later on, and keep them alive in your hearts for eternity.
Manual wheelchairs are not expensive. Electric wheelchairs are expensive, but there are lots of used ones available on the net. Patients value their independence as well as their dignity. I always kept a bag hanging on the wheelchair, and it contained bibs, water bottles, towels, and a urine bottle. I used a urine bottle in many public places with a small blanket over my husband's lap. He was fine with that. I also learned to go into many men's washrooms, and people accepted that. In fact, some people offered to help if they could. It was fine. I just did what God asked me to do.
Remember, keep normality and dignity as much as you can. Be the hands and legs for your loved ones when necessary, but their voice and their thoughts are theirs. Even do some silly & humorous things if you feel motivated.
Venting is great. We hear you.
My husband got to the point where any physical contact was painful for him. However, he never complained. While he was still at home, I had lots of company come in to visit him. He was very worldly and enthusiastic. Once he was in the hospital, he entertained the nurses, and they loved him. They still talk about him, his courage, and his stories.
I know I am a Pollyanna, but it keeps me going, and it made my husband's last few years much more enjoyable. I would recommend watching Pollyanna to everyone, and also Patch Adams. Be risky. Be creative. Be happy. Be strong. Build memories.
Best of luck! Vent all you want, but also share your stories of some of the positive activities that you have 'created' with your loved ones.
Pat
ps: One more thing. I bought 50-60 DVD's from the cheap bins at WalMart, and watched them in the hospital with my husband. He often slept through them, but he wanted me by his side at all times. I was so happy to be there with him, and for him.
God knows how much I love him and miss him.