pain in ALS
My Mom had a similar situation with pain and discomfort. I think her loss of muscle really put a lot of pressure on her bones. Of course, the nerve die off caused her pain too via cramping. We knew that mom was going lose an ability when her cramping started in a particular limb etc.
She couldn't move around on her own to get comfortable. We used massage to help her a bit. We put small pillows under her hips to relieve tail bone pressure and got her a comfortable motorized chair that elevated her and was movable where she could adjust and try to get comfy. Medicare and supplement paid for it - get it as soon as you can. Unfortunately, unless a sleeping aid was used she would be up every hour at night asking for an adjustment. She just couldn't find relief and she didn't like sleeping aids or anit-depressants all that much. She was mouth breathing and had dry mouth at night. We devised a dropper bottle for her that allowed her to get moist without sitting up to swallow. We also used a anti-snoring spray for her just before bedtime so she would not get so dry.
It will be hard for you - prepare yourself. At they end, my Mom passed on April 6th, she was not wanting to eat too much, she tried the Bi-pap without success and she was getting weaker. On her last night, I noted that her respiration was weak, her breathing was choppy with neck straining movements and sucking from a straw was pretty much gone. Her good hand was gone and she was totally paralyzed. Her heart rate was up and when she asked for water etc. we saw that she could only drink from a small shallow basin but with a choppy motion. Things were happening rather fast and her mood was fuzzy. She didn't have any discoloration like you might think when you don't get enough air but she was fading. I keep thinking to myself that she was too subdued and relaxed. She didn't want to prolong her situation, she had a DNR and other directives, but it never got that far and she died at home in her sleep.
I know it will be hard on you but you must find a way to help the best you can. They have no one else and they worry so much about asking for help. Massage really helped Mom and the touching of human hands is a great comfort I think. Small pillows and foam seemed to be good as well as stretching to help with altering position etc. I used to just think about what I would need if I was paralyzed and this helped me find ways to help Mom. Transfering is hard but a few simple techniques makes it easier. Have her sit on a towel if you need to move her. roll up the end and use like a handle to ease her into a more comfy position in the chair or bed. This is a good alternative to trying to adjust them by pulling them up under the arms. it hurts less.
Dignity is diminished just by having only a few ALS symptoms so we always tried to include Mom is everything. She needed to have distractions and she needed to feel worthy. She hated being dependant on others so we tried our best to help her before she asked. There are so many tricks and techniques to help ALS patients without letting them think they are an inconvenience. Mom always worried about that and we reassured her that she was not. We often reminded her that she a wonderful mother and if we could help her just a little it not even close to what she sacrificed for us when she raised us.
Here is one trick we used. Mom had a hard time swallowing so we made sure her food was tasty and the right type. We tried to sneak in calories where we could and when we found out that it was easier for her to swallow Jello or pudding after chewing and swallowing a mouthful of food (this helps to clear the throat, reduce choking and other sensations) we made sure that at every meal we had jello or pudding available for her in between bites. So, when we fed her we did get a few extra calories in. We also used Whey-to-Go in her juices and smoothies. It is tasty and is "good" calories. Slippery food is best. Nothing dry. Pack on the Hollandaise on steamed and mashed veggies. We said "screw worrying about cholesterol" since we really needed mom to maintain weight.
Do research and if you Google key phrases about end of life signs it may help. If you have the strength do it yourself, if not get some help to make her life a bit easier and maintain your sanity/health too. After their struggle is over, you will need to take some time to get healthier yourself as you will be very tired mentally and physically.
My heart goes out to you. I wish you, your mom, and your family the best and the strength to help your family cope.