thank you all... this ****ing sucks.
I'm flying out in 2 weeks and again a month later with the family.
hfs. this disease is just ****ing awful.
the first trip I made- my mom was visibly weak and diminished. needed a cane and my arm to get around slowly (vs bounding over mountains, 2x hiking, 2x jogging per week). doctor had diagnosed it as slow-moving at the time, which we counted as a blessing for an 88yo woman who had already had a great life.
we just got back from the 2nd trip- 1 month after the first. :(
she has to use a walker, needs help sitting or standing and can barely talk. I did my best to put on a happy, supportive face while there... taking care of what I could for her (we got her a power lift chair) since my brother is close by and is taking care of eeveryting. but every time it's quiet and I have a moment to think... it's just ****ing awful. sleeping has been terrible too.