The slowest and most painful death is the death of the mind. It was happening to Dad, but I couldn't help but feel like it was happening to me, to all of us.
As I stood there quietly watching him, I saw his hands widen and waiver for a moment unsure, as if they had an agenda of their own and he was wrestling with them. They often took over and destroyed whatever it was he wanted to do. The very extension of his own body betraying him. In a second he gained control again and got his hands around Ava's little body to lift her up into his lap. He fumbled with her blanket and shirt for a minute trying to get his hands free of them. She turned around and looked up at him with her big brown eyes and said, "Movie Papa." He nodded and said, "Yes, how 'bout some Spongebob?" I let out my breath and relaxed my shoulders. It hadn't been easy for him the last few months since we'd moved out. He was lonely without the kids around making noise and slamming doors and leaving shoes in the doorway. We filled up the space in the house so there wasn't any quiet moments for thinking about things too much. There was always a bustle and a purpose when we were there. We needed him.
Dad seemed to light up whenever Ava was around. He would scoop her up and walk her around the yard in the sunshine. She would point to things and babble and he would happily obey her every command. Sometimes she would toddle around the yard and kick the ball or jump on him as he sat in the shade in his lawn chair. These were good times. Days at the lake in the hot sun, hours in the backyard throwing the ball for the dog, it was a time of forgetting the inevitable. I just prayed to God that she would remember him this way. Remember him like this, the way he should be remembered.
Beautifully written. Poignant, sad, yet...hopeful. You will have to tell me the whole story one day.
ReplyDeleteI wrote this in the past tense, but it's actually something in motion right now. My dad has alzheimer's (he's only 62) and I think one day I'm going to write a book about it. Maybe not just that, but I want to include that as a large part of it. Of course, who knows if I will ever do it, but I want to. So, yes, maybe I will tell you the whole story one day, but it hasn't completely unfolded yet.
ReplyDeleteI am sorry sorry that you and your family have to go through this... Our struggles are all different, but my mom was diagnosed with Alzheimer's six years ago, at the age of 67. I have written a number of posts about her and about my daughter who will never really remember my mother as she was.
ReplyDeleteThis was the first post that I wrote about my mother's illness: http://sagecoveredhills.blogspot.com/2005/12/on-being-home-at-christmas.html
Rereading it, it all seems so long ago. My mother is still at home, but no longer communicates and cannot get up by herself.
If you have questions, feel free to ask and I will share my experiences. One book that I found very helpful is David Shenk, "The Forgetting: Alzheimer's: Portrait of an Epidemic"
Blessings to you and your family.
Sage, thank you for your kind words. I am definitely going to check out some books on it. Another one I've heard about and I'm forgetting the title at the moment is one written from the Alzheimer patient's perspective. I've heard it's quite amazing.
ReplyDeleteI constantly struggle with the idea that it's such a slow death, it's such a hard way to watch someone go. Very similar to a lot of degenerative diseases. I am most certainly interested in anyone else's experiences with the disease.
My dad is actually being evaluated for a research study and hopefully he will be able to participate in it. It's very exciting. The study may not help him, but he's excited about maybe being able to help others in the future. It's experimental medication, but if it's effective, it's one more step towards prevention or possibly a cure.
Lovely thoughts on your blog post Sage. Thank you.
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