His Life Is Worth Writing About

My father was my hero. He and I had that special connection that fathers and daughters sometimes have. He could tell I was getting a cold before I ever felt it, and he could sense when someone hurt my feelings. When I still lived at home, he would go to our local dairy and get a banana split to bring home to me. It was his way to tell me he was there for me without intruding on my privacy. The end of his life was perhaps the most tragic time of my life. When I talk about aging gracefully, and healing, I have to include forgiveness. I wanted to write about this, because *he* wanted to write about it, but never could. Here is the first excerpt.

Opening the top drawer, I saw it – the leather journal I had given him to write about his life. He had said several times that he wanted to do it, and so I thought I was being helpful when I gave it to him. Slowly, I opened the journal. There, in the handwriting I recognized as my father’s, was written, “My name is Oscar West and I was born in Hot Springs, Arkansas”. I turned the page. “My name is Oscar West and I was born in Hot Springs, Arkansas”. Again, I turned the page, “My name is Oscar West and I was born in Hot Springs, Arkansas”. The words were written on the next three pages, and there was nothing after that. I laid the journal in the box with the other few things that were left in his room. His blue and white seersucker bathrobe, the khaki pants from L.L.Bean that he wore every day, the shoes he wore on our walks around his neighborhood and the hearing aids that never seemed to work. David lifted the box and we left the room, closing the door behind us.

I had arranged for the evaluation. I was tired of hearing all the stories from Mom about how difficult it was becoming. I made the appointment, believing that she would be proven wrong. There would be nothing wrong. He was just getting older, and the forgetting was a normal part of the aging process.

As we drove to the evaluation, I began to quiz him, hoping that he would remember the answers for the clinicians who would be seeing him over the next several hours. “Do you remember the date? It’s February 16th. Remember? Valentine’s Day was just day before yesterday and that is always on the 14th. And the year, Dad? It’s 2002 – it just changed last month.” As we approached the clinic, I noticed the sign above the corridor, “The University of Pittsburgh Alzheimer Research Center”. Saliva poured into my mouth and I feared I would be sick. I ignored it, telling myself that not everyone who was evaluated was diagnosed positively. Dad would be one of the ones that would walk away no different than when he walked in. He would not have the label “Alzheimer’s patient”. He would leave unscathed.

Following several days of testing and weeks of waiting, we entered the conference room and sat at one of the tables arranged into a large square. I recognized faces of the evaluators we had seen weeks earlier. There was the social worker, the psychologist, the speech therapist, the audiologist, the nutritionist, and of course, at the head of the square were the doctors. There were four physicians of various specialties, each leafing through the files in front of them. I thought about how routine this meeting must be for them, and how life changing it could be for our family. I knew that Mom was dreading hearing the words she had read so often over the past year, articles describing what to look for if you suspected your loved one had Alzheimer’s. She passed them all on to me, and I read the first five or six, but after that I stopped reading. They all said the same thing, and I knew that a definitive diagnosis was not really possible until an autopsy could confirm the illness. Instead, these clinicians would describe what they felt was the most likely reason for Dad’s forgetting.

I don’t remember which doctor began to speak, but a slide was showing my father’s brain as it was revealed in a CT scan. Next, a PET scan result was placed on the screen. The slides were turned off, and the neurologist looked at us. Clearing his throat, he said, “Dr. West, I am sorry to have to tell you that after reviewing all of the tests, and after several meetings together, we all believe that you do have Alzheimer’s Disease.”

I heard Dad’s nearly inaudible, “Oh, no”. Tears were falling down Mom’s cheeks, and my heart had sunken into my stomach. “Well,” he said, “I can fight it, can’t I?” What came next shredded my heart into pieces. The others around the table began to laugh. They were laughing at my sweet father’s slim hope that somehow, he would be able to control this, to stop it. I was seething, but said nothing. My face grew hot. “I’m afraid there is no cure for Alzheimer’s Disease Dr. West. But there are drugs we can give you that we believe could slow its progression, and of course, we recommend you begin those immediately.”

I have no memory of the rest of the meeting, but I remember the cold ride home. Despite the distance, the car’s heater never seemed to warm the frigid air. Shivering, I tried my best to somehow negate the horrible diagnosis my father had just received. “Dad, we will get a second opinion. I will call former colleagues at Duke and get you set up there. They have an outstanding Memory Clinic. We can go there and see what they think. You know, the diagnosis is not definitive. There is no way to *really* diagnose this disease except with an autopsy.” He sighed, and smiled faintly. “Shirl, I don’t think I want to see any more people about this. I think I will just start the medicine, and go home. I have so much work to do in my garden after being away these past few weeks. And I am sure there are bills that need to be paid. I appreciate it, but I think your mom and I just need to get home.”

 

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