NHAMM, it sounds like your mother might be progressing as quickly as mine has done. My mother was diagnosed late September, and at Christmas she noticed twinges or "tingling" in her feet. By late January she'd had a few falls, but she was walking ok with a walking frame to steady her. Up until 3 weeks ago she was still getting around with the walking frame - to and from the toilet, bed and getting her own peg feeds organised. Then two weekends ago all that stopped. She is completely reliant on carers and family to get her to and from anywhere. Also as soon as her legs stopped working her hands started to weaken, and she can barely write, and she needs someone else to administer her peg feeds now.
My family did go away with her for a weekend in early February (5-6 weeks after the first leg tingles), but they needed a special "disability" hotel room so that there was space for a walking frame in the bathrooms, grab-bars on the walls next to the toilet and so on. They took the walking frame with them and also hired a folding wheelchair. She managed fine with all that. The main challenge when they were away was her fatigue. She really had to be in bed napping every day after lunch. Then last weekend (6 weeks after that first trip away) they attempted another trip away. This time they needed a disability room and also a wheelchair car. Fortunately while my sister was investigating the availability of a wheelchair car to hire a charitable NGO heard what she was doing and offered to lend her one. But the trip fell through as my mother got a gastro bug of some kind and wasn't well enough to travel. There won't be another opportunity now - she's too far gone and her level of sedation is increasing all the time.
I think if you can manage a vacation with your mother then go for it, even if it is restricted a little. Quite frankly, if her progression is similar to that of my mother, you won't get another chance, and you're in for a rough ride through summer and Fall.
Some bulbar patients seem to progress very fast, and unfortunately my mother is one of them. I know exactly what you mean when you say that there is some kind of change (or loss of function) every week. We have noticed the same thing. Our biggest challenge is getting the services we receive adjusted on almost a weekly basis. The people who make decisions about our entitlements can't believe that a woman who requires someone to help her shower and dress each day (a 40 minute service) can change so much that one week later she requires TWO people to help her shower and dress, and then the week after that she requires two people 3 times a day, and the week after that she requires two people 3 times a day for an HOUR.
One of my jobs this week is to figure out if there is any kind of overnight service available because my sister, who lives with my mother, is getting exhausted getting up in the middle of the night to deliver pain meds and take Mum to the toilet.
I hope your mother's progression slows down and I sincerely hope you get that vacation. Maybe you could look into where you might be able to hire a walking frame at short notice, just in case you find you need one quickly. Here we can hire these things through the local pharmacy. Of course we needed a more permanent solution - a walking frame that was allocated to us permanently - but you can't get that at short notice, and you might decide you need one the day before you leave for the beach. It would be good to know where such a thing can be sourced if you suddenly have a need.
sesl
