Friday, April 19, 2019

Comfort zone

As I go around my days, I am usually careful when I sense that I might be moving into unfamiliar places. In Somerville, where I have lived for decades, it would be difficult for me to get lost. Not long after my diagnosis, I started doing a very simple 30-minute walk. I start from my home and walk in a rectangle until I am back on my street.
There are other walks, embedded in my long-term memory. One is more challenging. There is a sky bridge, over Route 28, which connects east Somerville with the rest of the city. I hadn’t done it recently. It takes me into Boston. But the path ends at that point. Another route takes me past Tufts University, where Paula studied in the graduate English program. I don’t have to think about where I am. 
It’s a good 70-minute walk, overall, comparable to the route of The Walk to End Alzheimer’s fundraiser. Foolishly, last September, I did the Walk, despite having a deformed sole on my right shoe. It was months before I could walk normally without pain. Another route of mine follows Massachusetts Avenue, which is my umbilical cord. Sometimes I need to relieve myself. And let’s just say that my prostate gland is not what it used to be. In 2o16, at the end of a vacation in Puget Sound, my cousin’s husband had cooked up a vat of steel-cut oats. I love steel-cut oats. They are very nourishing, and I aim to cook them once a week. But I have to be careful. Like my dad, I struggle with my prostate gland. I know from experience that it can be serious. But that morning, I didn’t take into account the Seattle-area traffic. If I was on a bus, the bus would have had a toilet. But I was riding in a van. One woman on the van offered me an empty plastic bottle to collect my urine.
There probably would have been a toilet along the route. But the van lacked that service. We were on Interstate 5, heading toward the airport. Remember those O.J. Simpson commercials running through airports? That’s what I was doing in that early-morning dash to find the first restroom. My goal: don’t wet myself. Goal fulfilled.
What about cooking? Over the last week I was alone in our house for a few days, while Paula and our daughter were away. I had dinner with friends every evening, and the first few days, I made canned sockeye salmon sandwiches for lunch. Canned salmon can be fairly costly. The dressing I make is from scratch: olive oil and a smaller volume of balsamic vinegar. And there was an incident, but nothing came out of it. I was eating my five-minute oatmeal at the time. I received a landline phone call. It turned out to be from Paula. In any case, this incident was barely worth reporting. The electric burner was cherry-hot, but that was no great concern. I removed the pan from the burner and shut it off.
 What about going though security at airports or government buildings? I still yearn for my tan leather jacket, which I lost in 2o15, not long before my diagnosis, and I suggest my jacket is now the property of some airport employee. And in downtown Boston, a couple of years ago, I encountered a guard who seemed to want absolute proof that I had dementia. Who can say? Unless the person is acting in a strange manner. Only in the late nursing-stage do people with Alzheimer’s display typical symptoms: vacant stares, dizziness. And there are two activities that can be enjoyed to the terminal stage: Art and music.

Friday, April 12, 2019

$290 billion

 This was not the first time that Paula and I had traveled to Washington to advocate in the nation’s capital on behalf on Alzheimer’s and other forms of dementia. But this time more was as stake. In 2016, most people assumed that Hilary Clinton would be our next president. More important, in terms of health care, Clinton would have continued “Obamacare,” or something very similar. Instead, we got a president who has seemed at times to barely know his own mind. For Paula and me, the stakes couldn’t be higher. And that’s why when Paula spotted Senator Susan Collins, Paula immediately engaged in a discussion about health care. Keep in mind  that Collins is an endangered species: A moderate Republican. That wasn’t the case a generation ago. But over the decades, polarization has taken its toll.
And the real topic in Washington recently was the number of people who advocated on behalf of Alzhiemer’s disease. Under the banner of purple, Republicans and Democrats, engaged with lobbying. Elizabeth Warren made an appearance, but made no political message. At one point, Warren reached out to us with a handshake and a hug.
And if you want to know about everything about Alzheimer’s and other similar diseases, this is where you go: The 2019 Alzheimer’s Disease and Facts and Figures. If you want to get a copy, I suggest you that you reach out to your local Alzheimer’s chapter to
Here is a huge fact: Hours of unpaid Care and Economic value: more than more than $18.5 billion. Why women? The pat answer is, women have always done the dirty work. And I do mean dirty. When my dad was dying at age 86, from congestive heart failure, it struck me that his death was a rather clean death, compared to what I should expect for my own demise. But dying without my marbles is deeply discouraging. But that’s what Alzheimer’s has dealt. And that is no surprise. I am fortunate to be where I am. Sure, I will probably die a dreary death. But, I have been told that Alzheimer’s is a relative painless way to die. And that is probably true. But certainly, it won’t be a noble death, like dying in the battle of Austerlitz. No, we have to move into farce to fully appreciate this disease. Do you see Woody Allen being shot out of a cannon? How clever! The man who fears everything. That’s what living with Alzheimer’s is like. Absolut farce.