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.

Thursday, May 10, 2018

Too much choice

In the winter of 2014, I noted that grocery shopping was becoming more than just a weekly chore that cut into leisure time on Saturdays. At that time, I was the one who would make the short drive to our Market Basket in Somerville.
And if you live in the Boston area, you may vaguely recall that the winter of 2014 was a fairly bad winter. But after the record-setting 108.6 inches during 2015, almost everyone forgot about the snowfall of the year before. But I didn’t. At that time, I was already burdened with the possibility that I would lose my job. I recall one morning at Market Basket when I realized that I’d lost my grocery list. Being winter, the supermarket’s floor was marked by muddy footprints. The first time I dropped my grocery list, I was able to regain it, after about five minutes of harried searching. But the following Saturday, I was not so lucky. This time, I gave up, and called Paula for help. I married Paula for many reasons, but high on the list was her competence. She was able to recall almost every item, without a list. She was peeved, and why not? Fortunately for me, Paula’s short-term memory is superb, and she was able to mentally reconstruct the list, with perhaps one or two missing items. In recent years, Paula and I have been sharing the shopping. I wish I could say that I was truly sharing this task with Paula, but I have been relegated to the fruits and vegetables section only. It’s much easier, say, to find an eggplant or a couple of grapefruits than search for the precise variant of my daughter’s preferred yogurt: “Perfect Peach Cobbler.” But the next week, my daughter had moved onto “Apple Crisp Twist.”
Like many shoppers, Paula and I like to go to Trader’s Joe’s. We tend to avoid impulse purchases, but at Trader Joe’s, that can be difficult. I am especially enamored by the inexpensive dark chocolate (85 percent cacao). Ditto for the steel-cut oats, one of earth’s most nourishing grains. But in the summer of 2017, I had perhaps my worst moment in any grocery store. It happened at a Trader Joe’s in Arlington, which we rarely visit. So when I locked up my bike and entered the store, things looked somewhat unfamiliar. But what really tripped me up was the profusion of items within the same general label. This is not confined to Trader Joe’s outlets. But in its ethos of hipness, people with dementia seem to be unwelcome. This wasn’t intentional. It’s just the chain’s culture. The item that made me lose my composure was a packet of freeze-dried strawberries. An employee did try to help me, but because of my compromised short-term memory, I couldn’t hold on to my thoughts long enough to make myself clear. And by that time, my anxiety had skyrocketed.
Despair is a loaded term. But that was the term I heard in my head. I was still in the store. Most days, if I’m anchored by my writing, I feel whole. But when my dementia is exposed, as it was at Trader Joe’s in Arlington? Was I so demented that I couldn’t collect a few items in a Trader’s Joe’s on my own? The word I set on was lost: lost in a funky major food chain, lost to the life I loved until a ghastly disease colonized my hippocampus, lost to the old age that I took for granted, lost to a dark era, an epoch, night falling, my future foreclosed, the turgid closing of the book of life, bewilderment reigning, and at the end—“when the living will envy the dead.”