Medications
Comment 1: Since this disease is so individualized, about the only thing that you can really do is go the route of trial and error. Remember too, the doctors go on the "theory" of how something is supposed to work. We live with the reality. They aren't always the same. Hopefully, your doctor will be understanding of that.
Comment 2: She is so right, and only those of us who are living with the reality really know how awfully hard it is.
When your LO is in long term care
Caregiving does not cease when your LO goes into long term care. One takes on a different role of detailed scrutiny, checking everything, and I mean everything, so that the care given IS better than could be given on one's own.
And then becoming so aware that we become an advocate for other family members or people we see in such places. Some people have no one to speak for them. I know we have plenty to do, but it's a way to make some lemonade out of the "citrussy" lives we lead.