Nikki,
As you know the progression of ALS is so different for every PALS. I have watched Tracey's Bulbar Onset progress so horribly. At the beginning with minimal involvement, it was emotionally challenging, but brought our relationship even closer. As it wears on and she is now chair bound, lift dependent, needing feeding tube, the journey is starting to become physically exhausting for me.
She has her "love birds"/ friends that come while I am at work and we had sitters that come durng part of this time and it makes such a difference to Tracey. She still has a purpose and, with their help, she can still impact her daughters and others in a positive way. I think she is not afraid of being with her PaPa (in heaven), but petrified of the process.
Tracey fought having anyone else care for her except me until a few months ago when we hired a couple sitters. One sittert is great the other is a work in progress. She fights the ALS by not accepting its progression. Not healthy, but she will not discuss progression or end of life with me. This makes the trach discussion next to impossible.
Except for work, my outlet is a group of my friends play cards with me on Friday night, while a daughter stays with Tracey, coming to get me when I am needed. It is working okay. If the tracheostomy is decided upon, I will need some more time off. Please pray for us and this decision.
I hope your ALS progresses sooooo slow. I am so sorry it runs in your family. Nikki, I will keep you in my prayers......Bucky