Saturday, May 26, 2018

A sad end to an honorable man

The day after New Year’s Day 2018, the Boston Globe published a thorough exposé, one that involved people who Paula and I knew from the Alzheimer’s Association, Judy and her husband Steve. As the Globe noted, “People with Alzheimer’s and other forms of dementia frequently need hospital care, yet few hospitals are prepared for them.” In a memorable comment about how hospital staff treated Steve, who had early-onset Alzheimer’s, Judy noted, “I felt like we were aliens that had just landed in a place that had no idea of the language we spoke and no concept of the disease my husband had.”
The consequences were awful. The Globe made clear that Steve was much worse off than before he was admitted, including losing the ability to walk, violating the Hippocratic oath. By early April, he died at age 65. Since then, Judy has made a point of keeping Steve in her memory. It’s helpful, of course, to have an extended family as a form of support. In addition to two grown adult children, she has three grandchildren.
About 10 years ago, Steve built a townhouse adjacent to their main home. The family also maintains a home in coastal Maine. “He just loved life and being with his family and he loved to work on his projects. I think that speaks to what a patient man he was. He even build an in-ground swimming pool”—a task that most people who are handy would eschew. And Judy recalls having animated discussions with Steve on Eastern poetry and philosophy. One of Steve’s favorite poems was a short work by Edwin Markham; Judy relates it to Steve’s desire to participate in clinical trials and ultimately to donate his brain for research. He knew the research into this terrible disease wouldn’t help him, but would help others. Markham’s poem is:

He drew a circle that shut me out
—Heretic, rebel, a thing to flout.
But love and I had the wit to win:
We drew a circle that took him in!

            According to Judy, Steve’s first symptoms appeared 12 or 13 years ago, reflecting how long he was living with the disease. At that time, Judy and Steve were vacationing in the Mediterranean, in Barcelona and other cities. “Steve was an organized man. He carried a messenger bag, and had a pocket for everything,” Judy said. “We had that with us on our trip: The passports in one place, our bathing suits in another, dry socks in another. But whenever we arrived at a new place, he would empty out the whole bag. And I wondered, ‘Now why did he do that?’” On that trip, Judy first noticed that mornings were becoming more challenging.
            And then, seven years ago, Steve had redone the living room and repainted it. A day or so after finishing, he took an afternoon nap, and when he awoke, he asked, “Hey, who moved the furniture?”
“There were times when Steve would send me a message [from work],” Judy recalled. In one case, the topic was that Steve couldn’t find his car keys. When Judy arrived at Northeastern where he worked, it turned out that Steve had had the keys in his pocket the entire time. Another time, Steve delivered an important financial report to his boss, but the report was identical to the one Steve had turned in earlier. This was in May 2011. At that time, Steve began to say, “I can’t go to work today.” According to Judy, Steve “had never missed a day in his life, unless he was truly sick.” This was when the diagnosis process began.
Five months later, a neuropsychologist concluded that Steve had mild cognitive impairment, sometimes considered as a forerunner to Alzheimer’s. Later, another doctor arranged a lumbar puncture, a diagnostic test with high accuracy for diagnosing Alzheimer’s. In late September, Northeastern offered Steve an assistant to compensate for his cognitive decline. Originally, Judy wanted Steve to keep working. But one of his doctors noted that anxiety can accelerate the progress of Alzheimer’s. “If you want to make this disease go faster, expose yourself to stress,” the doctor said. After discussing what to do, the couple agreed that Steve should retire. Steve began to work with Judy at her family daycare center in their home.
Judy recalls this as pleasant period. In nice weather, Steve and Judy would hang out in a park with the daycare children. Some of the kids called Steve “Gramps.” This arrangement worked quite well, especially early on. But then came a time when Steve’s condition further eroded.
Had there been a chance for Steve? By the time I met him in late 2015 or early 2016, he was no longer speaking. Of course, spouses have many ways to communicate beyond speech. When he could still talk, Steve often said, “I want to go home,” even though they were at home. Judy said, “I knew he meant he wanted to go back to how things used to be.” Steve also often said, “My head is firing!” when having difficulty. Much later, when he was nonverbal, Judy described him as sometimes vigorously rubbing the sides of his head. She interpreted this not as a sign of a physical problem, but as his effort to communicate to her, “My head is firing!”
And I honor Steve, in his past agony of his Alzheimer’s, for coining a new term: My head is firing! At some point, I, too, may experience what Steve discovered first.

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