When the movie, Still Alice, was released recently I wasn't sure I could watch it. In the last few weeks, however, I found I really wanted to see how this story was portrayed on the big screen. I was thrilled that Julianne Moore won an Oscar playing this role because we need more awareness of Early Onset AD. The plot really hits home when a 50 year old college professor develops Early Onset Alzheimer's Disease. The events of the movie certainly bore some similarities to Billy's experiences - getting lost in a place you've lived and worked for decades, asking the same question over and over again without realizing he had asked it two minutes before, losing nouns when making sentences, ordering whatever I ordered in a restaurant because he no longer remembered what he liked...the list goes on.
In the movie, the Howards are an affluent family - Alice and her husband, John, are recognized college professors at Columbia University. They have three adult children - one in law school, one in med school, and the youngest is a struggling actress. While EOAD is no respecter of class, most of the people I have met who are dealing with this disease are middle class folks who worry a great deal about the financial consequences of this disease. We were a two income family, and losing one of those incomes was major for us. Alice and John don't seem to miss a beat in paying for their children's educations and maintaining their second home on the Cape. I know the movie didn't have the time to show the entire scope of the disease, but I wonder if it leaves people feeling that a person is diagnosed and ends up being mostly forgetful and confused and sad. The movie is well-written, well-acted, and well-meaning. It's a beginning, but there is so much more to the story.
I'm out of school for Spring Break this week which allows me to spend more time with Billy. I've gone to see him at various times which is nice, too. I was pretty low after seeing him Monday and Tuesday because he was so flat and sleepy. He hardly opened his eyes either day, but today was better. He was wide eyed and focused on me a few times. He smiled at me, and that helps so much. We had Billy's three month care plan meeting today, and it offered another dose of reality for me. In the last month Billy has lost 6 more pounds - 8 pounds lost the month before. At 6'1" he weighs 154 pounds with a BMI of 20.3. If the BMI drops to 18.5 he is considered underweight, and the hospice nurse wanted to let me know that we could do a feeding tube. I have strong feelings against a feeding tube or an IV for a loved one dying. The natural process of dying involves loss of appetite and thirst. I recently watched a video by a hospice nurse who describes the labor of dying. It confirmed what I had read and heard before, and it helped me understand the process better. Thank you, Kathy Lowrey for sending me the link.
In these many years of EOAD, I've held on to Billy as tight as possible. Alzheimer's Disease is fatal 100% of the time. Some progress slowly - some quickly, and some have major changes followed by plateaus. That is how I would describe Billy's journey. At this time, it is clear to me that the end is coming much faster than I am ready, but I'm getting there. It hurts deeply to see Billy so weak and frail, eyes searching for something, hands reaching for something, his body rigid and tremors taking over at times. Then he sees me, makes a connection and smiles. That tells me he's not ready to go just yet, or Jesus isn't ready for him, but when the hand reaches down and takes him home, my heart will rejoice that this is over for him. Don't mistake that joy for lack of grief or sadness. I miss Billy every single day, and when I can no longer kiss his head or hold his hand, a part of me will die, too. But to know that he is free and whole - that's worth my dying a little.