Dignifying Dementia (9 page)

Around then, we had lunch with a friend from my commuting days and a friend of his who was a psychiatric social worker. After the meal, she took Jim aside and suggested that he go to New York for another diagnosis – and then added that he deserved to be happier. My diffident Jim kissed her on the cheek and said, “Thank you.”

We all hoped that depression was affecting his memory. With the Professor's blessing, we made an appointment to see a psychiatrist in New York City. By then we had seen two neurologists, one internist, two psychiatrists, an osteopath and a psychologist, and we still didn't have an answer.

We had just had our annual eye exams. Because Jim had never cared for his progressive lenses, the change in his prescription was an opportunity for him to get separate glasses: one for reading, one for distance and a third pair of distance sunglasses. Each pair had a different frame. When we got home from the optician, Jim put all three pairs on the bed and tried and tried to figure out which glasses were for what purpose. For close to an hour, I tried to explain that the frames were different on each of the different glasses and what each pair of glasses was for. Why couldn't he understand? He got angry and frustrated. So did I.

As a consequence, we returned to the optician the next day and ordered new glasses – a single pair of photosensitive, Varilux lenses – one pair of glasses for everything. Change was hard for him – any change.

Armed with his new glasses, we went into the city to see the new psychiatrist. She added new words to our expanding vocabulary. Her diagnosis: dysthymia, chronic depression and some neurological problem; her phrase was “neurological substrate.” She didn't say, “Parkinson's.” She didn't say, “Alzheimer's.” She didn't ask Jim to count backwards; instead, she asked him to write out “Mary had a little lamb” on a pad. As he wrote, I saw how his once beautiful, open handwriting was now tiny – what's the Parkinson's word? – ‘crabbed.' How had I not noticed? How rarely he put pen to paper anymore. She wrote a prescription for Prozac, another antidepressant.

Alzheimer's? Parkinson's disease? Cognitive impairment? Depression? Chronic depression? A neurological substrate? What happened to physicians' examining you and saying, “You have the flu, or chicken pox, or a kidney stone?” What did any of this mean? Was there anything we could do?

With an ever-widening vocabulary and more drugs to avoid, we returned south. Jim had visibly deteriorated by the time he saw his radiation oncologist for a follow-up visit. Drawn and thinner, Jim smiled that endearing smile of his when he entered the physician's office, saw the office staff and the doctor, but his comprehension and language skills had declined, and he was processing information even more slowly. His answers to questions were more labored, and Jim seemed bewildered by being in the examining room. The doctor repeated what he had said at our previous visit, “Your cancer is gone.” Jim sobbed. Then the oncologist asked, “Jim, are you having any discomfort?” Jim did not respond. The doctor took me aside and asked, “Do you think he understood what I asked him?” Then privately he said, “I am concerned by the rapid changes in Jim's mental and physical condition.”

We stopped checking his PSA. How would he have reacted to his having a needle stuck in his arm? And to what end?

Frustrated by the lack of information and medical response in the South, I had asked my gynecologist in Cambridge for a referral to a neurologist at a teaching hospital in Boston, but when I phoned for an appointment, I was told we would have to wait months. With winter coming, I asked our internist in the South if he could refer us to a neurologist at a teaching hospital. The first available appointment was at the end of November.

Jim was so nervous about being late to that appointment that he awoke at 4:00 am. The drive was two hours, the appointment at 10:00 am. When we arrived, the neurologist walked out of his office, stood in the hallway, smiled, extended his hand and welcomed us as we walked down the corridor. He invited us into his office, offered us chairs and asked Jim, “How was the drive?” Jim was looking out the window at the bridges and rooftops of Charleston. “How do you like the view? How was your summer?” Jim answered each question slowly, but he answered. Then the neurologist asked Jim's permission to check his reflexes. Jim was relaxed. He chatted. He smiled. He didn't stand up and leave. While he groped for words, he seemed neither frightened nor intimidated, and Jim was not asked to perform. The doctor seemed to evaluate him, without mini-mental status tests. Apparently, the walk down the corridor, the handshake, the conversation and the examination of his reflexes enabled the neurologist to determine what was happening, while maintaining Jim's dignity. On the ride back, Jim referred to the neurologist as a “gentleman.” In his notes, the neurologist referred to Jim as a “gentleman” as well.

Jim saw the neurologist several times. At first, he diagnosed Jim with “cognitive decline” and “parkinsonism,” a condition that causes a combination of movement abnormalities – no other label. I had explained about the paradoxical reaction to Versed and Jim's drug sensitivity in general. Still no definitive diagnosis and no symptomatic relief from drugs, but we had a neurologist who smiled and treated Jim with more dignity.

After one of our appointments with the neurologist, I asked if I might speak to him alone. I asked him, “What is happening to Jim?” I asked for a diagnosis and a prognosis. His answer? “You got a bad hand.” The prognosis? Jim would become more tired over time.

For more definitive information, he suggested that we see a particular neuropsychiatrist. We did, and once again, Jim had to undergo psychological tests, while I waited in another room until they finished. After the testing was completed, the physician took me into another room and spoke to me privately.

The afternoon had begun with, “How can we help you?” It ended with the physician telling me that Jim might have Gertsmann's Syndrome, or Lewy Body Disease, or something else with a Latin, Greek or German name. Not knowing what those labels meant, I repeated what I had asked before, “What do I do?” He said: “Don't buy a boat or a 10,000 square foot house.” This physician said, “Don't buy a boat or a 10,000 square foot house”! The love of my life didn't know who he was, or who I was, and the medical advice was: “Don't buy a boat”?
Somebody help us, please! Oh, please!

What's the tally? Two for Alzheimer's, two for cognitive impairment, one for Parkinson's, one for Parkinsonism, one for Gertsmann's, maybe, or Lewy Body Dementia, and don't forget dysthymia with a neurological substrate.

On the drive back, Jim looked at me. He said, “What's wrong with me? Do I have cancer of the brain? Do I need to be put away?” His questions were heartrending. I could only reassure him that he didn't have ‘cancer of the brain,' and “No, he didn't need to be put away.” But how could I help that dear, sweet man? What was wrong? For sure, I knew we weren't going to buy a boat.

Amazingly or idiotically, we returned to Lenox for the following summer. Jim resumed seeing the Professor, who suggested we go to the Memory Disorders Program at the Berkshire Medical Center. There we met a charming woman, who offered practical suggestions like labeling objects and putting glasses and keys in the same place. She also referred us to another neurologist, our fourth, who, like the neurologist in the teaching hospital, was gracious and smiling and did not put Jim through his paces with quizzes and tests. Jim was at ease with her.

After examining him, she diagnosed him with Lewy Body Dementia (LBD), a disease that is difficult to diagnose; it is similar to Alzheimer's and to Parkinson's. Researchers were only beginning to study those similarities and differences, but in LBD, there is mental decline, sleep disturbances, hallucinations, depression and early psychoses.

In the fall, a fifth neurologist in Charleston corroborated her diagnosis. He too said Jim was suffering from Lewy Body Dementia. He recommended that I go online and look at
www.lewynet.com
. One of the hallmarks of the illness is drug sensitivity. Only an autopsy would have told us for sure.