I do what I do, to try to get people to understand EXACTLY what it's like to live with a loved one with AD. I've learned along this path, that most people just don't "get it".
Mike needs 24/7 care. He cannot do ANYTHING on his own. He wears adult diapers, his food is pureed and he cannot stand. His liquid has to be thickened to prevent him from choking. He cannot be left alone at all. Would you leave an infant by themselves for even a short time?
I'm finding, especially with Courtney and Brandon's friends, they don't get it. I'm surpirsed that their parents don't get it either. Neither one of them can just "get up and go" somewhere. Everything they do has to be carefully planned, making sure that Mike has someone with him. If Courtney goes out at night, my brother has to come and stay while I pick her up. They cannot go out on the weekends when it's my time to help the aide transfer Mike (she cannot do this alone). They can only be taken somewhere either before, during or after Mike's nap. They can only do things at night when I have somone to stay with Mike. It's plain and simple, but NO ONE seems to get it. Something so simple as a ride home for my children would be SO APPRECIATED, but for the most part, it doesn't happen. It would be a simple gesture to make things easier for us.
We are currently working with our newspaper on a story about AD and caregiving. I TRULY hope that this piece will shed some light on the reality of the disease. Nothing can be spur of the moment, it all takes careful coordination. This is our life - our reality.