Does anyone else have any tips?
Things to do
I'll talk about how I spent time with mum, we read books together, like the blue day book, we watched ALOT of movies, manicures and pedicures (foot spas are great), foot massages, shoulder massages, we were fortunate to have a family friend who was a hairdresser who came to the house to cut mums hair, leave in conditioner is good, head massaging is good, before her hands got too bad we'd do word find puzzles, everyone on this site is lucky to have the internet (and this forum), we played bingo, her favourite game and if you're in hospital, it's a good game to keep other people entertained also...
Things not to do
Never spray anything that smells near the bipap, it goes straight through the filter and it's not good. I once cleaned the table mums bipap was on with Windex while she was wearing it and it was horrible, I didn't realise.
Underpants
The best underpants for mum were the Tena brand, because they're elastic, you just pull them up then you can tear them apart at the sides for quick removal, she loved them and found them the most comfortable. The other kind with the sticky tabs were way too difficult.
Take your bipap
Take your bipap with you wherever you go remind your paramedics this is not oxygen it's different. Always have a fully charged backup battery pack (unfortunately these are heavy). Mum was once rushed to hospital the paramedics said they didn't need her machine because they 'had oxygen in the ambulance' and they were concerned about space (in the ambulance), well halfway to hospital they had to turn back to pick it up, meanwhile mum was struggling to breathe.
Notes
Have a note handy that explains MND. My note for mum started with her name, explained she has MND and that she can't speak but she can understand what everyone is saying. (It is horrible with slurred speech having someone ask me in front of my mother if she can understand, and once, if she could speak English) Attached was a list of her medications, dosage and times they need to be taken and while hospitals have their own, I always made sure we took hers with us because sometimes they run out or they improvise which is very frustrating. This note proved invaluable and ensured mum was treated properly.
Lamp tables for bipaps
Lamp tables are good height in the living room for bipaps, you put the water chamber on the floor and the machine on the table, the length of the hose is just right. In hospital one time, someone had a two tier trolley though I never got one of those, I wish I did, it was on wheels, very very handy. They used the second shelf for the chamber and the top shelf for the machine.
The ironing board
Is great to use as a table for meals or whatever, because it is height adjustable and it has the side where there are no legs that can go right up to the body when your sitting in a chair, it's also quite sturdy for light things (not stylish! but definitely useful) and while there are better tables out there, like the ones in hospitals, we all have ironing boards at home.
