Surfing the Waves of Alzheimer's

Surfing the Waves of Alzheimers: Principles of Caregiving That Kept Me Upright

Renée Brown Harmon, MD (2020, Many Hats Publishing)

        Renée Harmon lived a perfectly charmed life, until her husband started losing his mind. Harvey and Renée went to college together, then through medical school and residency, getting married after the first year of med school. They went into family practice together near Birmingham, Alabama, where they had both grown up (and where I went to high school with Harvey.) The family grew with the practice; they worked out ways to alternate staying home with the two little girls, and later to trade off school pickups and after-school activities. One would cook, the other wash dishes; one would make breakfast, the other lunch. Renée made time for reading, piano playing, and quilting; Harvey trained to run marathons.

        In December of 2009, while the family was vacationing in Costa Rica, she discovered that Harvey's memory and cognition had developed big holes. He got lost on the trails of the resort, and he couldn't follow instructions, because he couldn't remember them. Renée was concerned, then alarmed, and started doing online research. Wasn't forty-nine too young for Alzheimer's? It's rare, but not unheard-of. And what would they do if he couldn't practice medicine? That first year of waiting, watching, and testing was difficult, not least because Harvey was unwilling to talk about it. He did submit to testing at the University of Alabama at Birmingham; the results were awful and Renée let the state board of medicine know, leading to a sudden, devastating retirement.

        Renée describes this book as a teaching memoir, in the sense that she is passing on what she learned over the next eight years, in ways that should be helpful to all kinds of caregivers. The chapter headings tell quite a lot of the story in themselves: "If You've Seen One Case of Alzheimer's, You've Seen One Case of Alzheimer's;" "Put On Your Own Oxygen Mask First;" "Enter Their World;" "Acknowledge Your (Ambiguous) Grief." Each chapter closes with Practices for contemplation, whether that be through journaling, or through conversation with a counselor or support group. It's potentially difficult emotional work; the memoir's through-line makes it clear that Renée experienced lots of ups and downs.

         In the first place, she couldn't discuss her loss with her life partner, because he was protecting himself from thinking about it (or, maybe, that kind of self-awareness was the first thing to go.) She had the wherewithal to build a robust support team: Harvey's medical team; legal and financial experts; counseling help and a caregivers' support group; and the people she hired as caregivers and companions for Harvey, both before and after he went into residential care. With experience, she became more willing to ask for and accept help with simple, day to day affairs as well: who'd like to go with Harvey to walk the dog? Who'd like to help him cook, as long as he was able to wield a spoon? Who'd like to sit with him in church, while Renée played keyboards with the ensemble there? Letting people help, when they were so willing, turned out to be a mutual gift.

           Of course, Alzheimer's is incurable, and fatal. We follow Harvey and Renée through his forgetting how to shower and dress, and his gradual retreat into silence. She had good and bad experiences with nursing home care, especially during the period when he was strong, and strong-willed, but not aware of why he was being asked to do things: "Imagine yourself waking up every morning in a hotel in a foreign country where you don't know the language. Now imagine that a stranger walks into your room, and in the native language, tells you that he is there to give you a shower and change your clothes. As this stranger starts to disrobe you, what would you do?" What's termed 'resistance to care' is entirely predictable, though it often presents the challenge of keeping both patient and caregiver safe.

            She kept hearing, 'Renée, you are so strong!' "I guess I am, but what other option was there? I wasn't going to run away. I didn't cry in public often, so most people didn't really know how devastating it all was to me. And I had to be strong for our daughters. They were so young. And for Harvey. I couldn't very well dissolve into tears when his fate was so much worse than mine." She got good help, she took good care of herself, and she always led with love. In memory of the smart, kind young man Harvey was, I'm surpassingly grateful.

 

Here's more of Renee's story: https://www.reneeharmon.com/media/ 

Any Good Books, October 2020

 

How the South Won the Civil War

How the South Won the Civil War: Oligarchy, Democracy, and the Continuing Fight for the Soul of America

Heather Cox Richardson (Oxford University Press, 2020)

The paradox expressed in Heather Cox Richardson's subtitle does indeed run through all of American history. We have always pretended to a democratic ideal that, in practice, has some significant limitations. Richardson traces the original impulse to John Locke's 1690 Treatises on Government. As a Puritan, Locke believed that each person had a duty to seek a relationship with God, without the mediation of a priestly hierarchy; in that case, he wondered, would God really make one man more valuable and important than another? Conditions in the American colonies, especially the basic fact that they were several weeks' travel from the seat of power, "began to align colonials with Enlightenment political ideas simply out of practicality."

After Thomas Paine's Common Sense swept through the colonies,in 1776, Thomas Jefferson took the next logical step with the Declaration of Independence. "It was not simply an act of rebellion against a particular king; it was an act of rebellion against all kings, a resounding declaration that all men were created equal and had an equal right to have a say in their government."

At the same time, the economy and politics of the colonies had been organized around denying many people those equal rights. Especially in the cotton-growing region, men of property enslaved other people to do the hardest, heaviest work, and the slaves could never be considered equal. "How did slave owners make sense of that crucial contradiction?" asks Richardson? "They didn't. In their minds, freedom and slavery depended on each other." Virginia maintained a hierarchy based on denying the humanity of the enslaved, and James Madison rigged the constitution to protect the Virginian system. Universal white male suffrage was indeed a radical departure, but an oligarchy of wealth was already arising to replace that of aristocratic blood; in the scheme of things, the wealthy planters only had to reassure poor whites that they were superior to the black people, though they might never put together enough wealth to actually exert any influence. It's a game of 'let's you and him fight' that has never lost its salience, though the teams have sometimes changed their names.

What's new to me in this book is the place of the West in the North versus South story; the standard mythology of Texas as a place for independent men on empty land paves over a huge amount of contention between Mexicans, Americans, and various other groups of inhabitants. Free and slave states were inevitably in conflict about whose culture and economy would hold sway in the settlement of the West; the Kansas-Nebraska act of 1854 made the Civil War inevitable.

As the South had maintained the pleasant fiction that plantation owners were simply farmers, the mythology of the West posited hardy individuals, who made their living without government help or interference. In fact, mining, cattle, and oil grew up as capital-intensive businesses that rewarded oligarchy, which gave those states a common interest with the South. And while California did not have a substantial number of black people (because slavery was banned) it did have Chinese, Indian and Mexican populations who were excluded from the freedoms accorded to whites. And so it goes.

In the 1950's California was the seedbed of a 'conservatism' that claimed the central government was a very bad thing, and in this, the South was once again a natural ally. The white power structure didn't particularly want to educate black children; to be told they must do so by a bunch of elitists from Washington was all the more galling. And while California pumped out movies celebrating individualism as the essence of liberty, it was getting rich on the largesse of the Federal government. "California alone received more than twice as much annual defense spending as any other state; in the 1950's the Department of Defense poured more than $50 billion into it."

She traces the conservatism of Barry Goldwater and William F. Buckley down into the present day, by way of Phillis Schlafly, Roger Ailes, Richard Nixon, and Ronald Reagan, who turned the rich loose to get really rich, and leave the rest of us behind. Any suggestion that that might not be fair, or moral, was–and is–met with cries of 'Socialism!' And so on, through Grover Norquist, Newt Gingrich, Rush Limbaugh, and Rupert Murdoch, a long parade of anti-democratic activists.

The story of how oligarchy is systematically sabotaging democracy makes grim reading, but the clarity of it is bracing. This is bad news, but good information. Read it and weep, and then get to work.

 

 

 

Any Good Books, via email,

September 1 2020