I don't have the time or energy to capture all of our family's fun and important memories anymore. That makes me feel a little sad and guilty. My kids are also bigger and I feel like talking about some of the important events going on in our family is an invasion of their privacy. I've been trying to compensate by making these little Chatbooks, which are mainly compilations of comments and pictures that I've taken with my phone. It's not as good as what I used to do, but it is something.
The biggest thought I've had lately is one I can't stuff into a little photo book. It's more an ache that I try to subdue with faith than a thought, really. We're losing Bill, or we've already lost most of him. He's still here - alive, and still has his same old mannerisms and the same face that I love, but he eats cheese now. He's always hated cheese, and refused to eat it, but now he eats it on a sandwich and doesn't know that this is new.
And it's more than that.
He's lost in a world of paranoia inside a chasm of incredibly deep confusion which he will never climb out of. He's only 68 but he doesn't know who we are anymore and lives only in the moment. His world is like the movie "Groundhog Day" where the main character lives the same day over and over again only in his world he's living the same moment over and over again, and it's not a pleasant one. The moment he lives in perpetuity is one where he feels angry, extremely unsettled, anxious, confused and he never understands that those feelings are caused because he is sick.
His world doesn't make any sense to him. He doesn't make sense anymore. He can talk but he strings together words that never make a point. He doesn't know what has happened prior to that moment or have any context for what will happen next and so he can never be comforted or settled. It's a terrible way to live. I thought Alzheimer's was blissful unawareness but his experience has been so different than that. There's no bliss and he is very aware that he feels terrible. So then comes the faith. I know he won't always live like this.
Is it a terrible thing to look forward to death? That's the only peace he will have and until then it is just enduring. It's so hard to watch someone I love suffer.
We all mourn the loss of him even though he is still physically here. I heard one of my kids correct themselves last night when they asked to go to "Grandpa and Grandmas's house" and instead changed it to just "Grandma's house". It's just Grandma's house now. Grandpa will never go home ever again. Grandpa will never be at his Easter Egg hunt, or Thanksgiving dinner, or there to watch us all open his Christmas presents. He'll never go to another one of my children's school programs, piano recitals or soccer games. That hurts. We miss Grandpa and I miss my wise father in law who we could turn to for advice about the problems we have. Chris and I used to confide in him. Bill was always there with a solution and his toolbox. I am missing one of my favorite persons.
He's living in a different care center now than the one we put him in last September. It's a temporary place with a psychiatrist who is adjusting his medicines to help him become more mentally and emotionally stable. We're hoping that it will be possible for him to return to the nearby care center. We feel so much concern for him every day and now, more than ever, the only thing we can really do for him is pray. We pray for him to feel comforted and for him to be strengthened to be able to endure. We pray for his caregivers and for his doctors that they can find the right combination of medicines to help him be as comfortable as possible. And then we wait.