Picturing dementia: empathy, insights, and the occasional belly laugh

[One of Chast's unforgettable cartoons]

Some 25 years ago my parents and one of their best friends, Gertrude, started showing signs of dementia. As their conditions worsened, Gertrude’s daughter Ann and I began trading morbid geriatric jokes. Laughing helped us face the daily struggles of caregiving: it felt so much better than crying.

 In 2014, New Yorker cartoonist Roz Chast published a graphic memoir about her aging parents that would have been perfect for Ann and me. Can’t We Talk about Something More Pleasant?... is often improbably funny. Its comic-strip presentation is poignantly true to life: frazzled caregivers will recognize themselves on every page, and they may also see aspects of their parents in Chast’s clueless father and ferocious mother. Chast’s drawings let us cry, and then they make us laugh—sometimes simultaneously.

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These are the opening paragraphs of "Picturing Dementia," my double review - of Chast's book, and also of Dana Walrath's Aliceheimer's - in the May 11, 2016, issue of Christian Century. 

You can read the whole review online (and see more brilliant drawings by Chast and Walrath) at http://www.christiancentury.org/reviews/2016-04/picturing-dementia.

I hope you will. If someone you love has dementia, you probably need these books.

Eradicating Alzheimer's disease - if not now, when?

Are you hoping to live to at least age 85? If so, there's good news and bad news.

• The bad news - If you turn 85 in the next ten years or so, you'll have about a 50% chance of getting Alzheimer's disease.
• The good news - Researchers have never been closer to finding a cure.
• The unfortunate news - Alzheimer's research is inadequately funded.
• The hopeful news - Last February a bill was introduced in the U.S. Senate that would commit adequate personnel and resources to fighting this disease.
• The frustrating news - The bill went immediately to committee, which means it is competing with thousands of other bills for attention. Most bills die in committee.
• The scary news - The Alzheimer's Association projects that the number of people affected with the disease will increase by 50% over the next 20 years; by 40 years from now, it will have doubled or even tripled.

For me, Alzheimer's has a human face. The pictures on the left show my mother as a bride, a mother, a grandmother, and a great-grandmother. She died at age 85, a few weeks after the last picture was taken, after living for about six years with Alzheimer's. My father died four months earlier, the week before his 85th birthday, with the same disease. My mother-in-law suffered increasingly for about 10 years before dying with Alzheimer's at age 86.

I, for one, want to get this bill out of committee and onto the Senate floor immediately.

No time to waste
 We have no time to waste, say Sandra Day O'Connor, Stanley Prusiner, and Ken Dychtwald in "The Age of Alzheimer's," an op-ed piece in yesterday's New York Times:

Starting on Jan. 1, our 79-million-strong baby boom generation will be turning 65 at the rate of one every eight seconds. That means more than 10,000 people per day, or more than four million per year, for the next 19 years facing an increased risk of Alzheimer’s.

The authors argue that ignoring the oncoming wave of people with Alzheimer's is going to cost the government (and individual families) huge amounts of money. Adequately funding research, by contrast, could save trillions of dollars in Alzheimer's-related care by relegating "Alzheimer's to the list of former diseases like typhoid, polio, and many childhood cancers." Eventually Alzheimer's will be conquered - but "unless we get to work now, any breakthrough will come too late to benefit the baby boomers."

As a 62-year-old boomer myself, I would like to see this disease wiped out soon - not only for my sake, but also for the sake of my husband, children, and grandchildren.

Alzheimer's is a terrible disease. It isn't just Grandma getting pleasantly vague. As Alzheimer's progresses, a person no longer knows where she is or what she is doing there. She doesn't recognize friends, family members, or - eventually - even herself. Her emotions rage out of control. She may leave the house and wander strange neighborhoods, gather small objects and redistribute them throughout the house, forget what she is cooking and start small fires. She may become paranoid or even violent. And because she knows something is terribly wrong but she doesn't know how to get help, she is often depressed, angry, or frightened.

Some of my friends believe that the government should stay out of health care. Good health habits and private funding, they have told me, should suffice, and families should take care of their own. In dealing with Alzheimer's, however, those solutions are inadequate.

There is currently no way to prevent Alzheimer's. My parents, who both died with Alzheimer's,  did not get it because of bad habits. They ate a mostly vegetarian diet and never drank alcohol or smoked. They exercised regularly, walking three miles most days. They were sociable people who spent lots of time with friends. They were people of faith. They were well educated. They read books. My father even wrote books. The thing is, you can do everything on those how-to-prevent-Alzheimer's lists and still get Alzheimer's.

Few families are equipped to take care of a person in the middle or later stages of Alzheimer's. I wanted to take care of my parents myself, but Alzheimer's is not like other debilitating illnesses. People with Alzheimer's are a danger to themselves and to others 24/7. One daughter with two sick parents is not up to the task. One elderly father-in-law with one sick wife eventually needs help. Nursing homes can't do a good job on their own either. But a good nursing home or board-and-care home, working in cooperation with caring family members, can at least keep the patient clean, fed, safe, and somewhat socialized.

Unless one is very rich or dies very quickly, private funds will not cover the cost of necessary Alzheimer's care. Many families can't afford any paid help. If the wage-earners must continue working, they may have to leave Mom at home alone, hoping she won't get lost, set the house on fire, or break a hip. Middle-aged and older daughters often quit their jobs to care for an ailing parent, thus reducing their own retirement savings and Social Security benefits and making it more likely that their children will have to do the same for them.

My parents were fortunate - they had private insurance, including nursing-home insurance. Those funds, together with Medicare, Social Security, and their life savings, barely paid for their combined total of seven years of care, even though they received quite basic services in a nursing home that charged comparatively modest rates. (If a family wants to keep the patient at home and hire helpers, the cost is far higher.) If my parents had lived just a few months longer, I would have had to apply for public aid for them, in spite of their lifetime of frugality, saving, and wise decisions.

But there is reason to hope that one day Alzheimer's disease will be eliminated!

Researchers in the private sector are making tremendous strides toward eradicating this disease. A lot more funding is needed, however - not just for patient care (though that need is growing at an alarming rate), but especially for research so that patient care will no longer be necessary.

O'Connor, Prusiner, and Dychtwald compare Alzheimer's research today with AIDS research 25 years ago:

In the mid-1980s, when our country finally made a commitment to fight AIDS, it took roughly 10 years of sustained investment (and about $10 billion) to create the antiretroviral therapies that made AIDS a manageable disease. These medicines also added $1.4 trillion to the American economy. The National Institutes of Health still spend about $3 billion a year on AIDS research, while Alzheimer’s, with five times as many victims, receives a mere $469 million. 

That means we are spending 32 times as much on each person with AIDS as on each person with Alzheimer's, and with demonstrably good results - people with AIDS are living longer, and more money has been injected  into the U.S. economy. We were wise to commit to fighting AIDS. Now it's time - past time - to commit to fighting Alzheimer's as well.

What we can do today
If you've read this far, you probably have a personal interest in wiping out or containing Alzheimer's disease. Perhaps you already donate to the Alzheimer's Association. Consider contacting one or both of your senators as well. If one of them is among the 23 on the Health, Education, Labor, and Pensions committee where the National Alzheimer's Project Act is languishing, urge him or her to recommend its passage to the full Senate. If your senators are not on the committee, encourage them to schmooze with those who are. Here's what I've written to Senator Dick Durbin. If you wish to borrow any of my words when writing to your senators, feel free. You can find an easy-to-use e-mail form for contacting your senators here.

Dear Senator Durbin:

I'm writing in support of S 3036, the National Alzheimer's Project Act, which was introduced to the Senate last February 24, read twice, and referred to the Senate Committee on Health, Education, Labor, and Pensions.

Finding a cure for Alzheimer's disease would save untold billions of federal, state, and private dollars over the next 40 years as we boomers age and decline.

Without a strong federal commitment to eradicating the disease, however, a cure is unlikely to be developed before millions of people suffer and billions of dollars are spent, all unnecessarily.

I realize that you are not on the committee that is supposed to be studying this bill, but you know the people who are. You have consistently supported legislation that improves health and helps the needy. As an aging boomer and the daughter of two parents who died with Alzheimer's disease, I hope you will be able to influence your Senate colleagues to get S 3036 out of committee and to get moving on a strong national commitment to eradicate this tragic disease.

Respectfully yours,
LaVonne Neff

The Shallows, A Time of Gifts, and the importance of memorization

I just sent a review of Nicholas Carr's new book, The Shallows: What the Internet Is Doing to Our Brains, to Christian Century magazine, so I won't review it here. I will say, however, that the book is well researched and thought provoking, and Carr is an engaging writer to boot. If you're thinking you might want to buy or borrow it, you can get a preview by reading his Atlantic article, "Is Google Making Us Stupid?" (July/August 2008).

But I'd like to comment here on his ninth chapter, "Search, Memory," which includes some startling ideas that aren't in the magazine article. Carr strongly disagrees with those who see no point in memorization, now that nearly anything we might memorize is available in the Internet's vast data banks. Without well-formed memories, he believes, we become unable to synthesize our cultural heritage and reinterpret it for our day. We can't draw on it to inform our own creative endeavors. And we certainly can't pass it on to future generations. "Outsource memory," says Carr, "and culture withers."

While reading The Shallows for work, I was also reading Patrick Leigh Fermor's A Time of Gifts for fun. In 1933 at the age of 18, Leigh Fermor set off on a solo walking tour from Holland to Constantinople. This book, the first of two about his journey, gets him as far as Hungary. With no MP3 player to distract him, he amuses himself en route by singing and reciting poetry: Shakespeare, Marlowe, Spenser, Keats, Tennyson, Browning, Coleridge, Blake, Scott, Swinburne, Rossetti, Wordsworth, Kipling, Donne, Herrick, Raleigh, Wyatt, Herbert, Marvell, Housman, Chaucer, Carroll, and Lear--to name only some of the authors he mentions.

Leigh Fermor, I should point out, left school at age 16.

If I made that journey, I wouldn't know enough poetry to get me from breakfast to lunch on the first day out. Back in the 1950s when I was in elementary school, memorization had largely fallen from grace. My father had memorized long poems in the 1920s, but by age 16 all I could recite was William Cullen Bryant's "Thanatopsis" (learned for extra credit to prove to my father than I could do it too), a couple of poems by Robert Frost, the first two and a half verses of "Paul Revere's Ride," and "Gerald McBoing-Boing Meets Mr. Magoo," a poem published in Family Circle that my mother suggested I memorize when I was driving her nuts on a long car trip (I was an 8-year-old chatterbox, and I had run out of library books).

This is a shame because, in Leigh Fermor's words, "I was at the age when one's memory for poetry or for languages - indeed for anything - takes impressions like wax and, up to a point, lasts like marble." Fortunately I attended a Christian school that, though it had given up on poetry and languages, still expected us to memorize scripture. Lots of it, from the King James Version. I whined and grumbled, but my mother wisely told me to just do it. "When you're older," she told me, "these verses will stay in your mind. You'll be glad they're there."

Mother was right, and so, I believe, is Nicholas Carr. As I learned in grade school and still remember, "out of the abundance of the heart the mouth speaketh" (Matthew 12:34).


Check out William Dalrymple's 2008 interview with Sir Patrick Leigh Fermor here.