Hi Kathy,
You are indeed in the worst phase of this. There is total confusion and frustration. The notebook idea is really a must. You will think of questions and things you need at all hours of the day and night and you need to write them down right away so you remember.
Also, round up your support group now. The bottom line is you know you will not get through this alone. None of us get through it alone, well, I guess there are a few that did and they are remarkable for it, but the majority of us needed help. I was the caregiver and wanted to be with Kevin as much as I could. So I had to have help to keep the house going. Anyone that says what can I do to help; give them a task! Seriously. This is not the time to think you might inconvenience someone. If you have folks who love you; give them a task. Let them know exactly what you will need. You know you will need help, so get it set up now!
We will be here for questions and online support. We have been where you are, but it sounds like you have extenuating circumstances which are going to make it more difficult. Please don't hesitate to ask for advice or opinions. Even if you just need to cry, vent, scream or whatever, we are here.
Welcome to the family...one we wish we didn't have to belong to, but we do so we do it together.
Blessings,
Kathy