Dignifying Dementia (7 page)

Within five or 10 minutes, he was fine, and I was “Elizabeth” again. We sat down on the sofa. He said he felt a little heavy- headed and had no recollection of what had happened. I called our internist, who saw Jim that morning. After examining him, he said, “I am going to refer you to a neurologist, so we can rule out Transitory Ischemic Attacks (TIAs), mini-strokes.” Aaah, ‘to rule out.' Soon, I would wish that doctors could ‘rule in.'

At our appointment, the neurologist asked Jim to count backwards by threes and to name the presidents in reverse order. That presidential question bothered me. I wanted to say, “We have been living in Ireland; ask him the names of the Irish or British prime ministers.” I refrained. He also asked Jim to draw some diagrams, which he did with difficulty. Then the doctor recommended that Jim have a magnetic resonance imaging (MRI) scan.

We returned to the neurologist's office for the results of the MRI. The doctor slapped the films against the light box and said, “This is brain shrinkage, and I am 90% sure you have Alzheimer's.” After that announcement, I tried to listen to his description of Jim's shrinking brain, but I stopped hearing and asking. I should have said, “What does brain shrinkage mean?” I should have said, “What about the TIAs? What does 90% sure mean?” I didn't. The doctor never looked at or spoke to Jim again, except when Jim asked quietly, “Do I need a home?” The neurologist said, “Why do you ask that?” and continued describing to me what he saw on the images – too much science.

He wrote a prescription for Zoloft to alleviate depression and Aricept to slow the progression of memory loss and told us to come back in three months. He recommended that Jim see a local psychologist for testing. Then he shook our hands, smiled and said, “Have a Merry Christmas!” He added happily, “I'm taking my family to Disney World.” Like a robot, I said I was happy for him and wished him a Merry Christmas. I was numb. What had Jim comprehended? What were the implications of what we had been told? The doctor was only 90% sure, and we had a prescription for two drugs.

We had an emergency room doctor saying “Dementia,” our internist saying “Let's rule out TIAs,” and a “90% Alzheimer's” diagnosis from the neurologist. Could this be true? Didn't everyone's brain shrink with age? Maybe, oh maybe, the psychologist would be able to shed some light on what was happening.

That night when we climbed into bed, I hugged Jim and wept. He said, “Don't worry, kid. We'll get through it.”

Jim never liked tests, quiz shows, puzzles, card games or filling out applications. I had tried to twist his arm to play Scrabble. From time to time, I could get an answer to a crossword puzzle query. As for therapy, Jim accepted other people's seeing psychologists and psychiatrists, but he saw therapists as pseudo-priests who listened to confessions. However, in an effort to get more answers, and still believing we would, we followed up with the psychologist. Given his antipathy for short answer quizzes, I wondered how he would handle a ‘battery of tests.' Wasn't it humiliating enough to be asked to count back from 100 by threes? He was willing to go. I prayed we would learn more.

The entryway to the psychologist's office was the first challenge. We looked at each other as we tried to figure out whether the door opened into a waiting room or into a private office. Finally, Jim knocked. The psychologist opened the door. Jim said, “I didn't know what to do, so I knocked.” “Well, that's one way to handle it,” the psychologist said.
Oh God, we are part of a ‘door-opening' experiment.
Not an auspicious start.

The psychologist offered us chairs but never smiled. He asked Jim questions about his personal and professional life; then he took him into another room to give him some standardized tests. I couldn't believe how unfriendly he seemed. How was Jim going to relax? Afterwards the psychologist wrote a lengthy report indicating that there were “lapses in Jim's memory.” Thanks! Didn't we know that without putting him through hoops? But we were no closer to knowing what was wrong, because rather than confirming that Jim had Alzheimer's, the psychologist wrote that the “lapses” or “cognitive impairment didn't appear to be Alzheimer's.” Brain shrinkage? Didn't appear to be Alzheimer's? I, of course, held onto the phrase, ‘lapses in memory.' But other than giving him humiliating tests and offering him drugs, why couldn't anyone tell us what was the matter with Jim? I was used to doctors being kind and definitive.

Winters had always included medical appointments, so in addition to seeing the neurologist and psychologist, Jim had an appointment with his urologist for a routine PSA (prostate-specific antigen) test to screen for prostate cancer. Jim's previous numbers had been elevated, and this test indicated that they still were, so the urologist recommended that Jim have a biopsy to determine whether there were any cancer cells. In preparation Jim took Cipro, an antibiotic. He was accumulating prescriptions. The Aricept and Zoloft hadn't gone down well, so Versed was no longer the only culprit.

At 7:30 pm on December 31, 1999, New Year's Eve – Millennium Eve – Y2K Eve, the phone rang. I picked it up. It was the urologist. I signaled Jim. He picked up the extension. Jim asked me to stay on the line. The urologist said, “I wanted you to know that there are cancer cells in several quadrants of your prostate, and it's very treatable.” He went on to explain radioactive seed implants. I could see Jim's face. After the opening remarks, he wasn't listening, just like me in the neurologist's office. Jim thanked the doctor for the call. But before we hung up, I blurted out, “By the way, why are you calling tonight?” He answered, “I didn't want to ruin your Christmas.” Once again, a physician's choices bewildered me. While I appreciated his giving us the results, what timing! What a rationale!

After he hung up the phone, Jim appeared thunderstruck. For him, ‘cancer' was a death sentence. I tried to reassure him by reminding him that he had been successfully treated for skin cancers and that the urologist had said his cancer was “very treatable.” I doubted what I said made any difference.

Did Jim understand the implication of his cancer being ‘stage one'? That he had a relatively low Gleason score, the degree of aggressiveness of a tumor of the prostate, new vocabulary for us. What he heard was that he had cancer. Jim sank into a depression.

Over the years, when Jim had been monosyllabic, I would ask, “Are you OK?” He invariably answered, “I am fine. I am just not my usual ebullient self.” Well, if he wasn't always ebullient before and had become frustrated by his memory problems, now there was this.

But, at least, this diagnosis was definitive, and we had to weigh different treatment options ranging from surgery, to seed implants, to ‘watch and wait,' to herbal remedies.

Believe it or not, I was grateful for the diagnosis of prostate cancer, because focusing on a treatment plan for the cancer distracted Jim from the problems with his mind. Our internist encouraged us to go to a prostate support group meeting. We did – once. It required talking and was too public for Jim, so I went online. Should we go back north to Memorial Sloan-Kettering Cancer Center in Manhattan?

I had been doing some online editing and had become friends with the operations manager who lived near Boston. I told Belinda about Jim's cancer diagnosis. She immediately contacted an oncologist in Kentucky, who invited us to call him at his home. He also recommended radioactive seed implants and added that the procedure was not ‘rocket science.' He said, “There's no need to go to Duke or Sloan-Kettering or to Kentucky to see me; Jim can undergo the treatment just as well in Savannah.” We thanked him, and I researched other websites. Jim looked at the printouts, reflected on the phone calls and decided on the method of treatment. His mind was working.

After consultations with the radiation oncologist, the urologist, and the internist, Jim decided to be treated with radioactive seed implants.

The morning of the procedure, I remembered to ask the anesthesiologist to avoid Versed because of Jim's previous paradoxical reaction. He said, “I have never heard of such a thing in adults.” I pleaded with him. When Jim came out of the anesthesia, the recovery room nurse asked, “Where are you?” Jim answered, “Paris.” She looked at me and asked, “Does he mean it, or is he joking?” I had no idea.

The radioactive seed implants were followed by a short course of external beam radiation. Despite his occasional tears, he was ‘of good cheer,' to use his phrase. We walked hand in hand to his appointments. Did he understand the external beam radiation treatments? After each treatment, he said, “They were taking pictures.” But afterwards, he cried and said, “My life is useless.”

Jim became sufficiently depressed during the prostate cancer treatment that our internist referred him to a psychiatrist. With Jim's language skills deteriorating, he had difficulty talking with her. She prescribed different antidepressants – none of which worked and most of which resulted in more paradoxical reactions – agitation or greater confusion. The psychiatrist was excited about one particular drug, Remeron, which she thought might alleviate his depression and reduce his tremors – now in his whole hand rather than only in the tip of a finger.

Within half an hour of taking the prescribed dose of Remeron, his lower lip drooped, he began to slur his words, and he was slumped over. He looked ‘stoned.' I called the doctor. She said, “Put him to bed and let him sleep it off.”

The next morning we had an appointment at a lawyer's office to sign some papers. I spent the evening looking for our durable power of attorney, a document I soon would have to use more than I care to say, including once on a trip to a Social Security Administration Office for me to become Jim's ‘representative payee.' By then he had ‘sobered up' and was able to sign his name many times – another drug, another reaction.

The psychiatrist also arranged for Jim to have an EEG, an electroencephalogram, which measures brain wave activity. The test required Jim to be sleep-deprived. Because he had to stay up all night, we were both sleep-deprived. The results revealed that Jim's brainwaves were slower than normal. But what did that mean? What were the implications?

Eventually the radiation treatments exhausted him, and he developed an ‘urgency,' which embarrassed him; he didn't want to walk on the beach anymore. He preferred to stay close to the house for fear of wetting himself; he let me help him with some of the nuisances of his treatment. He believed he was dying. He became more withdrawn, and if I asked, “Do you want to go anywhere or do anything today?” his reply was, “What's the point?”

His new blood tests indicated that his PSA was lower, but I told the radiation oncologist that Jim didn't believe that he had been treated successfully. Amazingly, the doctor braved a litigious world and wrote on the back of one of his business cards, “Your cancer is gone,” and signed his name. Jim's eyes welled with tears, but he still didn't believe he was cured. The doctor took out a mini-recorder and taped what he had written on the card. Jim put the card in his wallet; the tape went into his top dresser drawer.