Saturday, September 10, 2011
I realized today, really realized in my gut, that I can't save Flip. My husband is gone, and there was no precise moment in time when I could say goodbye and gain closure. His expression is mostly blank, he seems unaware when his diaper needs changing, and he walks in a half crouch like a giant praying mantis. I can still visit him every day and take him small comforts and treats, but I cannot hold back the force of this disease which is destroying him.
The occupational therapist told me that his is "a very complicated case." His symptoms don't fit the parameters of any specific disease so it is unclear at this point whether he has Alzheimer's, Parkinson's, Lewy Body Dementia or some bizarre combination of these with perhaps other components as well. My own body aches with mostly unshed tears. I think I'm afraid that if I start crying, I won't be able to stop.
It's horrifying to think that he may have been misdiagnosed all these years, and that he could have been helped before it reached this point. His neurologist of the last four years specializes in Alzheimer's, so perhaps she sees Alzheimer's in all her patients, as when you're pregnant and suddenly the world is full of pregnant women. You drive a red car, and every car on the road is red. The newest research confirms a genetic link to Parkinson's, and since Flip's father and sister had it, it seems likely, especially considering how early it manifested in him. To be fair, I took him to several neurologists before we settled on her, and all concurred in the diagnosis. Of course, he hadn't yet begun to exhibit the symptoms which suggest Parkinson's. Even the best of doctors can't diagnose what they don't see. I hold them all blameless.
He has an appointment with another neurologist, his 6th or 7th, in October. I don't think anything can change the course of his illness now, but all knowledge is helpful to some degree. Flip said "Susy" very clearly today, but the rest of his sentence was lost in translation. He deserves a Medal of Honor for not exploding with frustration at his inability to express himself. I couldn't do it.
It is time to take myself in hand. Most people eat too much when they are stressed but I am the opposite, a compulsive starver. I only have an appetite when all the signs are right. When I was a child, I read a book called "The Story of 100 Operas" and thought the Aida story the most romantic of all. At the end, when her lover is in a tomb with the walls closing in on him, crushing him to death, Aida jumps in to die with him. Many of my previous relationships reflected that view, sadly. Flip would not want this for me, and as it turns out, neither do I. So I am going to do the most life-affirming thing I can think of, short of buying shoes. I am going to hunt down a piece of chocolate cake with mocha buttercream icing and eat every crumb. If it's the last thing I do.