My mom was quite the trooper...she didn't like food much anyway or more importantly, she didn't like cooking. So the feeding tube wasn't a huge adjustment.
Five months after diagnosis, the doctor told my mom it was time to move to Calgary. It wasn't safe for her to be on her own anymore. That sent me into a tailspin. Oh my goodness, where were we going to live? I was living with a friend at the time and she was getting married but I wasn't ready to move away. So Dave and I talked about it and decided to buy a house.
Three months later I flew back to Ontario and brought my mom back to Calgary. Big step for my mom. She had never flown before. Of course there had to be some hitches with our flight....there were mechanical difficulties so we had to get off our first plane and they put us on a second flight. Great! Then of course getting into Calgary we had tons of turbulence.
Our new house was cute with a double car detached garage and a beautiful back yard. Oh, but was it stressful. It was really premature, Dave and I weren't married and Dave was recently laid off from his job. Dave decided to work on his own at home so he would be around if my mom needed someone. That was a huge help to me knowing that if my mom needed someone Dave would be around.
At the time I was working twelve hour shifts full time. I felt way too young to be caring for a sick mom and the stress of the breadwinner and paying the mortgage nearly did me in.
Calgary has an amazing ALS Society. If we needed anything we could get it from them. If you have this terrible disease, Calgary is a really good place to be.
My mom got a chair that would take her from a sitting to a standing position. She also had a machine that she could type into and then it would speak. She didn't like the voice machine much. She often just wrote her thoughts out. Thankfully her hands were not affected.
She had a lung function test but the muscles around her mouth were so weak she could not keep her mouth tight enough to create a seal. She had a sleep study test done as well to test her oxygen level. She would moan in her sleep.
And the saga will continue!