Wednesday, April 20, 2011

Daddy's Delirium: The Haunted House in a Beautiful Mind

    The lights in Daddy's brain had been extinguished one by one, until at times he seemed to be little more than a potted plant, who sat in the sun for hours with his eyes closed. He still knew who we were, and he when we hugged and kissed him, he always said, "Thank you." He never initiated conversation anymore. The only answers he had to our questions were, "I don't know," or "I don't remember." 
    We didn't dream that some mad thunderbolt could pierce his brain and propel him into a fury of storytelling, urgent confessions, scientific theorizing, twisted reminiscence and vivid hallucinations. If you live to be over 65, it is very likely to happen to you, whether you have dementia or not.
    What my father experienced was delirium, a temporary, acute-onset condition that is very common but rarely discussed, often misdiagnosed and poorly understood. In my father, it was disturbing to witness, but it was also a wonder to behold. A major new study has been launched to examine delirium's  neurological causes and effects.
    Daddy was diagnosed with mild cognitive impairment in 2005, and what we sadly witnessed over the next five years was a slow decline into dementia that was very unpredictable.
    By some miracle of will or dignity, he cured himself of his fecal incontinence -- which had been a problem for more than two years -- something that several doctors had said was impossible (even on the day he died, this depleted and demented man summoned the nurse and said, "I'm sorry to bother you with this, young lady, but I believe I need to have a bowel movement.")
    It was hell getting him into the shower, but he shaved, combed his hair and brushed and flossed his teeth without prompting. For a time, he roamed around the house, making a mess of everything -- misplacing, losing and discarding whatever he came across -- and he also became a "wandering" risk. He was still "there" enough to realize what was happening to him, and he often told us that he needed a "brain transplant."
     But that phase ended, and he became increasingly docile. We were unable to interest him in anything.
    He still laughed when we teased him, and he still remembered poetry. If you gave him a title, or the first line of a Shakespearean sonnet, he was off, and there was no stopping him. And he never lost his Southern courtliness.
    For the last couple of years, he slept most of the time, and was in a foggy, often distressed, state when he was out of bed. There were weeks when he mindlessly ate anything put in front of him, followed by weeks when our mother's determined efforts to prepare one beautiful meal after another were to no avail. He pushed them away like a pouty little boy and said, "Not hungry."
    One gauge I used to assess his cognitive decline was his ability to answer scientific questions. He had been a chemist, and long after he had forgotten his best friends, and even after he couldn't remember anything about his three daughters' growing-up years -- or about the doctor's visit he had just gotten home from -- he could launch into a crisp professorial explanation of chemical interactions, metallurgy and analytical protocols -- writing formulae or drawing molecular structures on napkins, and sounding like a total genius.. During his final year, even my simplest questions about chemistry, or even basic science, created a brief panic in his eyes, then a deep inward pondering and finally a look of anguished defeat. He had forgotten the question before he got around to saying, "I don't know." He couldn't even name any of the "rare metals" that had been his specialty.
    He told me that he didn't think, didn't dream and didn't remember anything. He was increasingly in a physical as well as a cognitive stupor. His eyes were half-closed, his mouth was slack, and he could hardly walk. He was virtually in a vegetative state.
    He was spending the day with Joe and me last spring. He had been up all night at home, distressing our mother with strange rants and making a ruckus upstairs and downstairs. He was frantic about being late for his junior college basketball game. "They're counting on me! I have to hitchhike to Charlotte, but I can't find my uniform! Oh no! Oh no!" The game that he was referring to was the championship 70 years ago, which he won by making one last shot as the buzzer sounded.
     Mama finally realized that he was not going to calm down and go back to bed, so she stayed up and let him talk for hours. His brain was being flooded with memories that his dementia had appeared to erase years ago, she said, but the memories were all mixed up: Ninety years of life in a massive jumble. She was exhausted, but she said it had been fascinating to witness the reawakening of his mind..
     When we picked him up to bring him to our house, he seemed exhausted, too. He refused to eat any lunch and said he wanted to lie down, so we helped him into bed. When I tucked him in, he said, "Thank you kindly, ma'am."
    Within 30 minutes or so, we heard loud talking and noises from the bedroom. Daddy was rummaging through all of the bureau drawers, yanking things out and saying, "No! No!" He seemed to be on the verge of tears.
    "My thesis -- it's gone! They took it -- what will I do?" he cried. "I have to present it to the faculty committee in twenty minutes! Mitch will be so upset with me!"
    Mitch, who died in the 1980s,  had been one of my father's oldest friends and was his boss for a time. My father had forgotten years ago who Mitch was, but now the memory had been somehow revived.
Photoillustration by Diane Fenster.
   Daddy almost collapsed, and I helped him back onto the bed, sitting down next to him. I asked him what his thesis was about.
   "I compiled all the reference data on 34 rare metals, and described the latest methods of production, the chemical and physical properties......It seems to me I limited my emphasis to the metallic or elemental forms, with only a minor review about compounds."
    It had been at least 18 months since my father had been capable of speaking in complete sentences, much less delving into his scientific knowledge. I was exhilarated as well as baffled by this revivification of his intellect. He was even employing his long-lost professorial tone. And using words like "hitherto."
    "The war accelerated the development of new technologies, and materials hitherto unknown -- the rare metals -- were suddenly in demand. Barium, strontium, molybdenum, beryllium, germanium, gallium, chromium....." his voice trailed off, and then he began breathing hard and looking at the ceiling..
    "Oh no, not again," he exclaimed. He reached up and fluttered his fingers. "Don't you see them up there? Crawling, crawling. They are so big. Can't Joe take them away? Oh no -- look! Now they're on the floor, too." He put his face in his hands. "Honey, please do something."
    We took him to see his doctor. We had to virtually carry him to the car -- his legs were collapsing under him -- and he continued with his wild monologue on the drive to the clinic. "Please take me to the airport so I can talk to your mother," he said. "I think she is going back to Poland. I'm afraid I've done something to upset her."
    Then he took my arm and whispered, "Did you know she was the first Jewish Miss America?"
     It was his mother, not his wife, who was from Poland. And it was my first boss in New York -- Bess Meyerson -- who had been the first Jewish Miss America. She did look a lot like my mother, but she wasn't as beautiful. And my mother had been raised in a rollicking Southern Baptist church, not a synagogue.
     We had to get a wheelchair to take him into the clinic. Daddy was behaving in such an agitated manner that the nurse had us wait for the doctor in an examination room instead of the waiting room. We didn't have an appointment, so it might be awhile.
    He was very distressed -- shivering, scratching his arms, chest and thighs, and looking around the room nervously.
Delirium IV by blepharopsis
   "Don't tell anyone, honey, but those men have been coming back into my room at night."
    "What men?" I asked.
    "The ones in hats and suits. They told me I have to hide their suitcases full of money for them, and I told them I don't want to. I don't know what they might do."
    He launched into an earnest, urgent communication with me that sounded as if he were speaking in tongues. My mother and sister had both described this to me, but I had no idea how chilling it would be to have your father looking deeply into your eyes and trying desperately to convey something while making no sense whatsoever. It was clear that he believed he was perfectly understandable.
    Dr. Maisa Morris, a beautiful and dedicated doctor, had been standing in the doorway for a few moments, listening to my father.
    "It's delirium," she said. "He probably has a urinary tract infection. Let's get a specimen, and we'll do a quick workup in the lab."
    Indeed, he did have a UTI. She prescribed antibiotics and said the delirium should subside within 24 hours. Actually, it took less than eight hours.
    We were so lucky to have a doctor who correctly diagnosed a frightening malady that is more often than not misdiagnosed. Just a few weeks earlier, my dad had experienced a similar episode when he was staying with my sister. There was an outpouring from him of tortured scenarios, reminiscent of the "Twilight Zone" or Salvador Dali. It was reason and real memory refracted through the prism of a deeply pained and damaged mind. It was riveting to watch as his barely-there brain blossomed, even though it was a rather garish flower. Because he had fallen earlier that day, my sister understandably feared that he had had a stroke or sustained a head injury, and he was so impossible to control, physically or emotionally, that she had an ambulance take him to University Medical Center. When I went to see him the next morning, he said I'd better cancel his poker party (he hadn't had one in years -- his friends had all died). The doctors there never mentioned delirium to us.When I asked the doctor if they had found evidence of a stroke, he said, "Stroke? I thought he was here for pneumonia."
    Although the hospital had been provided with exhaustive information about my father at intake, it apparently was still in the intake outbox. Hospital staff didn't know he had dementia, that he was essentially deaf, that he had diabetes, that he had a highly inflamed candida overgrowth in his perineal area which required treatment, or that he had fallen and hit his head the previous day. They had scheduled a bunch of tests, including a barium swallow, that had all been done just a few days ago at St. Mark's.
    "Can't you get the records sent here?" I asked the doctor. "It's ridiculous and abusive to put him through the swallow test again. He does aspirate. We know that. He does have aspiration pneumonia."
    The doctor told me he would get the records. When I came back later in the day, my father wasn't there.
    "They took him down for a swallow test," the nurse replied.
    And that was when I said, "This hospital is like being in the former Yugoslavia." It was ugly, slapdash, and everybody at the central desk was eating, texting, chatting or looking at a computer screen. No one ever came in to check on my dad unless I summoned them.
    They kept him until he was stabilized and released him, never correctly diagnosing his delirium.
     I was anxious to learn more about delirium. I had thought of it as a condition that might be brought on by a very high fever or by alcohol withdrawal, but I discovered that this "acute confusional state" is actually an expected phenomenon among hospitalized elderly people. I was astonished that it is so common, yet so poorly publicized and so poorly understood. The medical literature acknowledges that, "A firm understanding of the pathophysiologic mechanisms of delirium remains elusive.".
"The Machinations of Dementia" is a 2007 CD by Blotted Science.
    Delirium is arguably the single most common acute disorder affecting adults in general hospitals. It affects 10-20% of all hospitalized adults, and 30-40% of  hospitalized patients over 65, and up to 80% of ICU patients, particularly those who are mechanically ventilated. Up to 80 percent of those over 65 who undergo surgery will emerge from anesthesia with a case of delirium. ICU delirium predicts a 3- to 11-fold increased risk of death at six months.The reason is unknown.
    Delirium is coming to be recognized as a "sixth vital sign," and it is recommended that delirium assessment be a part of routine ICU management.
     Delirium can manifest as hyperactive, or it may be so severely hypoactive  that it borders on unconsciousness or a vegetative state. Having dementia is one of several factors that can predispose one to delirium, and -- according to the American Psychological Association's textbook on neuropsychiatry -- when delirium and dementia are both in effect, the delirium phenomenology tends to overshadow the dementia, which it certainly did in my father. I could find no studies on how this is possible and how, on a neurological level, it works..
    Delirium often manifests as disorganized or incoherent speech, purposeless behavior, such as rummaging, strange beliefs or visual hallucinations, especially the "crawly" objects my father had seen.
    Delirium may be caused by physical illness, which can be mild, or any process which interferes with the normal metabolism or function of the brain. Fever, pain, brain injury, surgery, traumatic shock, lack of food or water or sleep, and drug withdrawal can cause delirium.
    During both of my father's bouts of delirium, he had mentioned several times that when he was in bed at night a black guardian angel held vigil over him -- a "very gracious woman who never says a word." In spite of our grief over what was happening to Daddy, this was one detail that was heartwarming and delightful. It seemed so right -- since he had harbored such affection and compassion for black people since his childhood in Savannah -- that this particular image of comfort had manifested itself.
    Daddy was with Joe and me several weeks later when the symptoms began to appear again. He seemed to be in even greater distress, and was unable to answer the simplest questions, such as "Do you hurt anywhere? Are you feeling afraid?" He was speaking in that incomprehensible language again -- it didn't seem like jibberish, it seemed like an actual language -- but his demeanor was anguished. He wouldn't lie down or remain seated, but when he tried to stand, he collapsed. We decided to take him to St. Mark's Hospital, but this time his physical agitation coupled with his inability to use his legs made it impossible for us to get him down the stairs and into the car. We had the paramedics come get him.
    The hospitalist told us that he was unlikely to survive the night. He urged me to summon the family. It was past midnight. Both of my sisters were out of town. Doctors had been making rash predictions about my dad's imminent death for a long time. So I ignored the advice, and we went home.
   My father had already been stabilized by the next morning, and he seemed better physically and mentally than he had in months. There was a new serenity in his eyes. He slept a lot during the next several days, and usually didn't have anything to say, but he surfaced now and then to recite poetry or joke with the orderlies. I spent hours there, just holding his hand.
    He asked me if I had ever seen his guardian angel. I said I wished I had. "She's still comes to see me at night," he said. "If you ever have a chance to express my appreciation, please do it for me, honey. She is so very kind.".
   He would die a few days later, with all of us around the bed. Life support had been removed, as per his living will, but he held on for I think a couple of hours. He was on a morphine drip. His eyes were closed, and he was breathing with difficulty. We waited and waited.
    Then, something happened that I have never discussed with anyone, because I start crying just thinking about it, and I know I wouldn't be able to get three words into the account without losing my composure.
    So here it is:: After hours of sleeping and hours of dying, and as we stood there, holding hands and waiting, he suddenly opened his eyes. My sister gasped. He was looking straight into my eyes, because I happened to be standing at the head of the bed, and he was slightly turned in my direction. We were stunned, and wondered if he would say something. like, "Thank you, and good night," which would have been just like him. Or maybe he wasn't going to die after all, which would also have been just like him. I think we were all afraid to move or even breathe.
    He just looked and looked into my eyes, and I looked back, I think for more than half a minute. I stroked his cheek. I was determined not to blink for fear it would end this magical moment. What I saw, I strongly believe, was my father, in a conscious state, truly and deeply seeing me. A doctor would probably discount that, but I don't care. His brain was not dead -- I could feel it.. I don't think he was looking through me or looking past me. What I saw in his eyes was an innocence -- almost childlike -- a softness, and a gentle outpouring of love that I know was meant for all of us. There was no pain and no fear. Then he closed his eyes.
    A few minutes later, he died.
    I have tried in vain to learn how it was possible for delirium to enable the incredible "firing" that had occurred in my father's nearly-gone brain. It was like a rebirth, or a sort of remission, despite its disturbing aspects.
    I continue to search for the answer. I can find nothing on delirium that doesn't regard it as an acute and dangerous medical condition. Still, I wonder: In what way, neurologically, did delirium open up and bring back to life a brain that had seemed so far gone?  How does it happen, and where does it happen, and does this have any implications for treating dementia? Delirium turned the lights back on in my father's brain, although what was illuminated was more a haunted house than "a beautiful mind." Is it conceivable that delirium could be induced and then harnessed in those with dementia, in order to revive at least part of their intellects, memories and personalities?   
    A new $11 million grant from the National Institute on Aging has enabled a team of scientists from Harvard Medical School, the Institute for Aging Research at Hebrew SeniorLife, Beth Israel Deaconess Medical Center (BIDMC), and Brigham and Women’s Hospital (BWH) to study the causes and effects of delirium, with the goal of developing new ways of preventing delirium and its long-term consequences.
    I think we need to examine its potentially positive as well as its negative implications. To me, it was miraculous, despite the ways in which it tormented my father and us.