Suzanne W. Churchill

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On MindFULLness

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Experts argue that we don’t read online: we skim, scan, or surf. This is mostly true for me. I prefer a book to a webpage, especially if I want to get absorbed in what I’m reading. When I read online, I have a harder time staying focused. My sabbatical project is an attempt to design a digital environment that can sustain close and deep reading. I’ve found a few websites that give me hope that it’s possible.

BrainPickings logoOne of the first websites that was able to grab and hold my interest was Maria Popova’s BrainPickings.org. Popova is a librarian by training and a reader by nature. In this blog, which really isn’t like any other blog I’ve encountered, she guides you on a journey through books she has read, serving up generous samples, explaining the ingredients that make them so scrumptious, and making you crave the book—dare I say, priming you for consumption, since the hyperlinks to Amazon.com and my Amazon Prime account make resistance futile.

As you read about one book, teasers appear in the left sidebar, whispering in your left ear, “you might also like…” And indeed, yes, I would like that book, and the next one, too. Gorging is easy on Popova’s site, which is exquisitely designed. I don’t care for the highlighter yellow and black color scheme, but it works, directing my attention to the right places, in the right order, so that while I can easily get lost in the ideas, I never get lost or stranded on the site.

I assumed Popova simply had great taste in books, a knack for identifying the best bits, and good web design skills. But after listening to the podcast of her interview with Krista Tippett on On Being, I realized that the book magic she works online isn’t simply the product of good taste: it’s the work of a great writer. Popova is astonishingly articulate, perceptive, and wise.

In response to Tippett’s invariable opening question, “was there as spiritual background to your childhood,” Popova replies without missing a beat:

I grew up with an attitude toward religion that can best be described as a cautious curiosity as a child. And then befitting the teenager’s typical distaste for nuance, it evolved into contemptuous curiosity.

To come up with such a pithy blend of alliteration, parallel structure, and self-deprecating insight to describe any aspect of my childhood would take me hours of painstaking revision (I’ve already revised this awkward sentence 5 times).

Popova spontaneously generates aphorisms that you can chew on for days, like: “critical thinking without hope is cynicism. But hope without critical thinking is naïveté.” She says she tries to “live in this place between the two,” but part of the pleasure of BrainPickings is that, even as it sharpens your critical faculties, it tips the scales toward hope. Popova leans toward hope in the interview, too. Reflecting on the news media’s penchant for horror, she says:

…Yes, people sometimes do horrible things. And we can speculate about why they do them until we run out of words and run out of sanity. But evil only prevails when we mistake it for the norm. And yet, the currency of news journalism is making it the norm.

Popova defies this norm, saying “to me, there is so much goodness in the world. And of course, we just kind of have to show up for it and refuse to leave.” BrainPickings refuses to leave no good stone unturned, especially when it’s inscribed with wisdom.

Reminiscing about her great grandfather, whom she met only through the “extraordinary” marginalia he inscribed in the English books he smuggled into Bulgaria, Popova says she felt a “strange kinship” with him—an attraction to “this sort of intellectual dance with another mind that you could see in the margins of his books.” This “intellectual dance with another mind” is what BrainPickings lets you see. It goes a step further and invites you to join the dance, demonstrating the steps so well that you naturally slip into a rhythm of deep and satisfying reading, feeling as graceful, articulate, and perceptive as Popova herself.

Listening to Popova made me want to be more like Popova. I mentally resolved to start a private blog of my own reading, a choreographic record of my intellectual dance with other writers. It would be, I imagined, a practice of mindFULLNESS. Rather than the mindfulness of meditation, in which you seek to empty your mind in order to be fully present in the sensations of the moment, I would record the FULLNESS of my mind just at the moment I finished reading something. I could visualize the posts—a string of endless glass beads, stretching out into the days ahead.

Then, I spent the next eight hours procrastinating, avoiding writing about the ways in which Popova’s words had inspired me. I took a shower, rode my bike to the office, replied to overdue email, including the one from a PhD student in India inquiring about little magazines and addressing me as “Dear Sir,” and the one from the scholar from New England, who asked me about research I’d done for my dissertation, 20+ years ago. I drove 2o minutes to  J. M. Alexander Middle School to get Zac after his E.O.G.’s, only to learn that early dismissal would be unexcused, and anyway, I’d forgotten my wallet, so I didn’t have any ID (a fact I couldn’t admit because there was a policeman behind the front desk, and I still had to drive home). I drove home, sticking to back roads and the speed limit. I even wrote three thank-you notes.

But here I am, refilling my mind with words I’d relished while listening to Popova and walking the dog this morning. We got back home just when Krista Tippett asked her the question that’s at the core of my sabbatical project: “do you have hope and confidence in the Internet, in our technology as a place where — perfection is a big word — but where the human spirit can be cultivated and deepened?”  Popova replied, “Well, the thing to keep in mind is that this is such a young medium, you know?”

I paused the podcast—eager to come back to it tomorrow.

Memory Is Something If You Give It Away

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Recently, I was knocked flat for a day by a stomach virus. I couldn’t do anything but lie in bed, which gave me a lot of time to miss Mom. In my half-asleep state, I imagined a conversation with her—the one I wish I’d had, before it was too late. It began with me asking, “How does it feel to have Alzheimer’s? How does it feel in your head?” Her answers were clear, but just like with a vivid dream, I can’t recall what she said. I can only remember my questions: Are you scared? What are you most afraid of? What are you most scared to lose?

I don’t know why I never asked Mom these questions. Maybe I was in denial, afraid to ask because asking meant admitting she had Alzheimer’s. Alan Dienstag, a psychologist who works with Alzheimer’s patients, says that there’s a “lack of curiosity at a crucial moment that’s being driven by that fear and not wanting to look, not wanting to see it.” And that crucial moment is the time when you can have the conversations that matter most.

But at that crucial moment, I was also preoccupied with immediate concerns: moving my parents to a new place, getting Mom settled, reorganizing her closet and drawers, soothing her anxieties. I don’t know what we talked about really, but I probably spent more time asking her questions like—where do you want me to put your socks, or do you still need these sandals?—than inquiring about things that really mattered. Maybe I was too afraid to venture beyond her physical needs and peer into the terrifying abyss of Alzheimer’s.

Lately, I’ve been thinking about the early stages of the disease, about what I wish I’d said or done or known. I’m not beating myself up, because I know we handled Mom’s illness as best we could at the time. But as her Alzheimer’s progressed, I learned things along the way that might have changed my early approach.

Pretty much all the advice I would give myself is summed up in Alan Dienstag’s interview with Krista Tippett in On Being. Oddly enough, I listened to the same interview more than a year ago, quoting it in an earlier post, but the parts that spoke to me then were different, suggesting that at the time, I was preoccupied with Mom’s suffering and the possibility that I might someday be diagnosed with Alzheimer’s. Now that her suffering is over (though my fear of contracting the disease is alive and well), I’m more concerned about missed opportunities.

What leaps out to me in the interview today is Dienstag’s urge to conversation and his warning not to postpone or shy away from talking about the disease, because time is running out more quickly than you think: “It really slips away quickly. And you see it slipping away week after week.”

Our natural tendency is to deny the slippage and look away, because the disease seems so alien and embarrassing. For example, during the brief stretch when Mom was able to go to an adult daycare called Memory Lane, we let her believe she was volunteering there to help entertain the elderly (she was younger than many of the other attendees, and she did like helping out). We preserved her delusion in order to protect her from embarrassment. But in doing so, we may have denied her an opportunity to talk with other dementia patients (and with us) about her experience of the illness. According to Dienstag, people in the early stages of Alzheimer’s find relief and satisfaction in talking with others who have the same illness. The sense of mutual recognition and community breaks them out of the isolation that “is ultimately the destination that this illness brings them to.”

Dienstag offers a different way of looking at Alzheimer’s that makes it seem less shameful and isolating, and more familiar and even heroic. He says that talking with people in the early stages of the illness can remind us what we all have in common—i.e., our mortality:

we don’t have an unlimited amount of time. And we’re going to run out of it. We’re going to run out of it. And when you watch these people, you see people who are running out of time. So there’s almost something heroic like, “I’m going to tell you who I am before it’s too late. I’m going to tell you this story about picking lilacs from a tree with my mother.” Whatever it is. You know, a simple story like that somehow has this kind of — it’s elevated. It’s elevated by the circumstance.

Dienstag asks his patients write down their memories and give him what they’ve written, because he knows they’re likely to lose their papers or forget the memories by the next week. This practical decision gave him a profound insight: in handing him their writing, his patients weren’t losing their memories; they were giving them away, entrusting them to him. And as Dienstag’s grandmother realized near the end of her life, “if you can give something away, you don’t lose it.”

I apologize in advance for the de-elevating comparison, but this lesson reminds me of the “Magic Penny” song we used to sing in Sunday School, a tune whose sentimentality and ear-worm potential are rivalled only by Disney’s “It’s a Small World”:

Love is something if you give it away,
Give it away, give it away,
Love is something if you give it away,
You’ll end up having more.

It’s just like a magic penny,
Hold it tight and you won’t have any,
Lend it, spend it, and you’ll have so many,
They’ll roll all over the floor.

Now, I’ve encountered a few bad pennies and enough overdrafts to know that you can actually overspend love and end up with a deficit. But whatever the limitations of the magic penny metaphor for love, as a thought experiment, what if we applied its logic to memory? Think about it: memory is something if you give it away. If you give your memories away to others, those memories have the chance of becoming collective memories, and as collective memories, they have a lot more reach and staying power than if you keep them to yourself.

So what if, instead of hiding, denying, or being ashamed of Alzheimer’s, we accept it as an unwanted invitation to help those afflicted give away what matters most—our stories of who we are, how we got here, what we are most afraid of losing, and how we want to live our finite and final days.

The New York Times today ran a story about teenagers with terminal illnesses having a say in their end of life choices. There’s a new trend in social work to encourage these teenagers to talk about their illnesses and express their wishes for end of life care—conversations that benefit both the teenagers and their families. There’s even a planning guide for teens, asking questions like: If visitors arrive when you are asleep, do you want to be woken? If they start to cry, should they step outside or share their feelings? I wish there was a similar planning guide for Alzheimer’s, including all the questions I wish I’d asked Mom before it was too late for her to answer.

Since this post is actually less about looking back than paying it forward (did you catch the magic penny reference?), here are some other resources any of you who may be just starting down the road of Alzheimer’s with a family member:

  1. Read the book, The 36-Hour Day: A Family Guide to Caring for Person’s with Alzhiemer Disease, Related Dementing Illnesses, and Memory Loss in Later Life, by Nancy L. Mace and Peter V. Rabins.
  2. Listen to this NPR story about families who are grappling caring for people with Alzheimer’s. See if there’s a Home Instead organization in your area.
  3. Find out if there’s an Arden Courts near you or similar facility dedicated to memory care. For us, Arden Courts in Hamden provided more affordable, personal, and loving care. Also consider the option of an Adult Family Care Home, an alternative I learned about from Dina Ditacchio Wentworth’s comment on my blog post about the costs of memory care.
  4. Explore the wide range of online resources for caregivers. Here are 5 trustworthy websites with tips for Alzheimer’s caregivers. There’s a lot of overlap between the strategies, but you may find one speaks more clearly to you than others:

* A reader of this blog took the time to notify me that the Mayo Clinic link had changed. The “coping and support” page is no longer available; it appears that the Mayo Clinic is now more interested in directing people to their branches. I’ve added the Alzheimer’s Association and Lewy Body Dementia Association. The reader also suggested I add this link, warning about the importance of dental care for dementia patients. I haven’t had any personal experience with this dental organization, which appears to be a Nebraska business with a genuine interest in raising public awareness.

Into the Wild, Precious Life

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When your mother has just died, people come up to you with empathetic eyes and soft voices and ask, “How are you?” So genuine is the concern that I feel like I should burst into tears and confess that each day is a trial, that I feel as if I’m plodding through mud, dragging my sinking heart behind me like a heavy stone.

Instead, I admit, I’m doing surprisingly well—so much so that I wonder if my heart has become a cold stone. Ads for the just-released movie Wild deliver a subtle subtext to me: What’s wrong with you? Shouldn’t you be plunged into your own journey through the dark wilderness of grief? Shouldn’t the death of your mother leave you feeling lost, unmoored, and ravaged by unrelenting grief?

It hasn’t. Maybe I’ve already traversed that wilderness, as I hiked the long, meandering trail of Alzheimers, where the decline was so slow and relentless that I didn’t see the dark forest through each withered, falling tree. Maybe I’m further along the path of grief, past the deep gullies and sharp cliffs. Ok, so I needn’t be ravaged by grief, but why do I feel happy?

Watching Mom slowly deteriorate was so agonizing that I was unprepared for the relief I would feel when I no longer had to face sight of her unable to speak, walk, or even wake up. Now that she’s dead, I can begin the business of letting go of those tortured images and re-collect earlier memories of her, when she was full of life.

My sister-in-law set this process in motion when she sent me a Mead writing tablet (100 plain sheets), with the yellow Renys price tag of 79¢ still on it, which she’d discovered in a box of art supplies. Mom had purchased the notebook to write down stories she’d composed for her grandchildren, documenting their activities at the cottage in Maine and their New England excursions. There’s a story about Benjamin “who loves a very special lake in Maine,” and another about the “happy, noisy times” the four cousins have together during winter and summer vacations, which begins:

This year during Christmas week, 1999, Ben who is 7 3/4, Alex who is 4, and Luke & Thomas are 3 had fun day with their grandparents Nanu-Nana & Granu (Wintsch).

Here’s Mom come to life in her loopy, left-handed, back-slanted handwriting and in the  painstaking detail with which she records their exact ages, hyphenates the two names she’s called by her two sets of grandsons so that the story belongs to them equally, and inserts her last name in parentheses—for posterity, to keep the story alive for the next generation.

And then there’s her delight in the humor of their conversations, and her careful editing to perfect the timing of the punchlines:


 IMG_5697When I read this story, I don’t feel like I’m falling off a mountain into “the valley of the shadows of death.” I laugh and remember my Mom as she once was, so beguiled by her grandchildren, and my kids as 3-year-olds: Thomas so judicious and perceptive, and Luke so full of appetite.

Speaking of appetites, one of my favorite blogs is Maria Popova’s Brainpickings.org, a librarian’s buffet of delicious tidbits from good books. This morning I stumbled upon her post about Anne Quindlen’s A Short Guide to a Happy Life. When she was nineteen, Quindlen’s mother died of ovarian cancer—a devastating loss that paradoxically illuminated her universe:

“Before” and “after” for me was not just before my mother’s illness and after her death. It was the dividing line between seeing the world in black and white, and in Technicolor. The lights came on, for the darkest possible reason.

Quindlen insists on need to embrace death in order to live life fully. Like Wallace Stevens, who wrote in “Sunday Morning” that “Death is the mother of beauty,” she understands that mortality paradoxically gives birth to a fuller appreciation of life’s beauty. And like Mary Oliver, who in her beloved poem, “The Summer Day,” urges you to relish “your one wild and precious life,” Quindlen calls us to pay attention to the rich palette of the everyday world, to find beauty and joy in the mundane and minute:

Consider the lilies of the field. Look at the fuzz on a baby’s ear. Read in the backyard with the sun on your face. Learn to be happy. And think of life as a terminal illness, because, if you do, you will live it with joy and passion, as it ought to be lived.

It’s a morbid idea, to “think of life as a terminal illness,” but it helps me understand why I might feel a sharpened sense of happiness just after my mother has died of one.

 

Momento Mori, or Motherless Me

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“All hope abandon, ye who enter here,” because you are proceeding through the gates of shameless, narcissistic navel gazing. My mommy has died, leaving me motherless, which seems like good justification for ruminating, even if there’s little reward in it for you, my hapless reader.

I spent the long weekend in Connecticut for Mom’s Memorial Service, which was lovely. I wish she could have been there to enjoy it! Friends and family gathered from as near as the choir loft to as far as the Philippines to celebrate her life. Her childhood friend Jean Kirkham and three of her grandsons offered reflections, coalescing into a harmonious eulogy in four parts. Jean embodied the Canadian-bred elocution, warmth, and grace in public speaking that Mom tried to pass along to all her children, grandchildren, and pupils. Her grandsons spoke with confidence, love, and humor, each exuding his  distinctive personality and reflecting different facets of hers. They began by introducing themselves: Alex, as “her second grandson”; Luke, a twin, as “one of her grandsons”; and Ben, the oldest and agent provocateur, as “her favorite grandson.” Despite Ben’s bravado, it was clear from their remarks that Nana had made each grandson feel like he was her favorite—like he had an especially close relationship to her that no one else could match and a place in her heart that no one else could occupy. Although she was always obsessed with being fair and equal, she somehow made each one feel like they were getting the lion’s share of her love.

A couple of times during the four-day stay at my sister’s house, I lost my temper, snapping at my nephews and brother-in-law, when I felt like their  teasing provocations were unjustified, insensitive, and, well, unbearable under the circumstances. Soon after, when the heat of the minor crisis had dissipated, I made my apologies, admitting that no one would ever accuse me of grace under pressure. No one came to my defense. Nobody took my side or quietly reassured me that I had been justified in my outburst.

That’s when I missed Mom most, of course. Because just as she did with her grandsons, Mom always made me feel like she understood and sympathized with me ABOVE ALL OTHERS. She verified MY feelings and took MY side. Or seemed to. No doubt she was making my siblings feel like she was on their side, too. But no matter. She made me feel like I was her favorite. Now, motherless, I feel bereft. I’m no longer anybody’s favorite.

This feeling is maudlin and self-indulgent, fueled by false consolations and nostalgic distortions. But my Mom just died, okay? So permit me a few indulgences. I’ll get over it eventually.

Already, even as I feel sorry for myself and miss that kind of love that probably only a mother can provide, I also am starting to think: hey, wait, maybe I don’t need to be anyone’s favorite! Maybe I can grow up just a little bit and stop needing to have all my feelings and outbursts justified! Maybe I can start to think, act, and behave based on my own sense of right and wrong, which you’d think would be sufficiently developed after almost a half century!

Ok, probably not a profound realization to you, but a giddily liberating one for me. Which leads me to my hairdresser Chip (a font of wit, wisdom, and fashion advice), who told me that, after the trauma of losing your parents, you may find it’s actually liberating. People don’t want to admit it because it seems so heartless. But you no longer have these authority figures in your life, reminding you of a heritage you must uphold and a set of expectations you must fulfill. You’re free to be whoever you want to be.

This was not actually true for my Mom, who loved her parents with such devotion that she never, ever stopped trying to live up to their standards. They are the main protagonists of the memoir she wrote at age 70, and their deaths still ravaged her, sixteen years later:

The most sad and traumatic times in my life came with the deaths of my parents – my father on his 78th birthday, June 14, 1989, and my mother at the age of 81 on March 22nd, 1992. Nothing that happened before could have prepared me for the pain and emptiness I felt with their loss. It hovered around me for months, the shock and despair attacking suddenly and fiercely at unexpected times and in unexpected places. It sometimes still does that, especially in church where singing their favorite hymns is guaranteed to bring tears.

Mom kept singing her parents’ favorite hymns, carrying on their traditions, even sitting in the furniture they passed on to her, right up until the end.

Familyof3-600x600

There’s a lot of my Mom that I want to carry on—her fierce love of her family, her empathy and curiosity about what makes people tick, her love of reading and dachshunds, her ready laughter. But there are things I want to let go of too—an anxious need for approval, a desperate compulsion to be good, and crises of panicked indecision. “We are always changing” is a truth I’ve tried to embrace in the course of Mom’s Alzheimer’s, more than once. Alzheimer’s changed her, and it changed me, too. Her death has also changed me, in ways I don’t yet fully understand. I’m still learning how to let her go. Maybe the next thing to let go is the need to be justified.

In Memoriam: Valerie Jean Gates Wintsch

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IMG_0596-768x1024Valerie J. Wintsch, 75, died peacefully on January 2, 2015, at Arden Courts in Hamden, CT, from complications of Alzheimer’s. A vivacious, well read, and intellectually curious lady, Valerie loved good books, music, friendship, and laughter. Most of all, she loved her family. She was a devoted daughter, wife, mother, and grandmother.

Born in Naugatuck, CT, in 1939, Valerie was the daughter of teacher Dorothy Moses and chemical engineer Charles Gates. She grew up in Elmira, Ontario, a tight-knit community that nurtured her lifelong loyalty to family and friends—as well as to the Queen of England. An only child until her brother David arrived when she was 15, she remained very close to her parents throughout her life. Her friend Jean Kirkham was an honorary sister (and fellow prankster), Isabel Huggan, a “pretend” little sister, and cousin Chris Woodman, a “borrowed” brother.

Valerie earned a BA in history with a minor in music from the University of Connecticut. She married Fred Wintsch, whom she’d known since childhood, on June 23, 1962, making their home in Naugatuck for the next 18 years. She taught history, English, and music at Hillside Middle School for 3 years before resigning to embark on a career as a full-time mom.

In Naugatuck, Valerie joined the Women’s Study Club, twice serving as President, sang in the choir and directed children’s musicals at the Congregational church, and performed in amateur musical theater. Valerie and Fred moved with their children to Durham, CT, in 1980, where she joined the Garden Club, volunteered at the library, led a book club, performed in Connecticut Gilbert and Sullivan Society productions, sang in the United Churches choir, and supported the Crackerbox Players.

In their 52-year marriage, Valerie and Fred enjoyed many travels and adventures, with especially fond memories of their trips to Switzerland and their summer cottage in Maine, where family and friends would gather to swim, kayak, listen to loons, and tour the lake on Fred’s steamboat.

P1020415-1024x768Valerie is survived by her husband, Fred Wintsch, of Wallingford, CT; brother, David Gates and his wife Gert, of Waterloo, IA; daughter Elizabeth and son-in-law Peter Shoudy, of Durham, CT; daughter Suzanne and son-in-law Matthew Churchill, of Davidson, NC; son Jonathan and daughter-in-law Suzanne Wintsch, of Haddam, CT; and eight grandchildren: Ben, Alex, and Noah Shoudy; Thomas, Luke, and Zachary Churchill; and Isabelle and William Wintsch.

Valerie possessed a keen intellect and read voraciously. Her extensive vocabulary and impeccable grammar made her an excellent conversationalist and a formidable Scrabble player. She was an avid social and family historian, meticulously recording every facet of her children’s lives in baby books, delighting her Elmira school chums with her detailed recollections of their exploits, and writing a memoir for her children and grandchildren. For her, personal stories were rich sources of heritage, humanity, and humor.

An inveterate perfectionist, Valerie never stopped trying to be good and to please others. At the same time, she had a forgiving heart when people around her didn’t match the high standards she held for herself. She would dimple up in laughter at the slightest provocation, drawing great pleasure from pranks, practical jokes, zingers, and her husband’s dry wit. She was continually astonished by the marvels of her good fortune – Fred’s constant love, her close relationships with her children, and the ongoing delight of her many wonderful grandchildren.

A celebration of her life will be held at the United Churches of Durham (corner of routes 17 and 68) at 11 a.m. on January 17, 2015.  In lieu of flowers, memorial gifts may be made to the Alzheimer’s Association or Hospice of Connecticut.

Mom carried on until we all gathered together this Christmas to say goodbye, and Ben was able to snap this one photo before the camera battery died.
Mom carried on until we all gathered together this Christmas to say goodbye,
and Ben was able to snap this one photo before the camera battery died.

This Hour Her Vigil

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Christmas ornaments on treeThe Christmas ornaments, decorations, and lights are packed away, a New Year’s Day ritual that is tedious but satisfying. This year, my sense of accomplishment is troubled by a nagging sense of something unfinished, something demanding my attention. But the task before me is not mine to complete: it is my mother’s. She is dying. We are merely keeping vigil.

Her Alzheimer’s has run a rapid course since her diagnosis 3 years ago. Nevertheless, this last stretch has caught us by surprise, so precipitous has been her decline. Last week, we received word that she’d stopped chewing her food. We drove up to Connecticut the day after Christmas. When we got to Arden Courts, she was dozing in her wheelchair. She never fully woke up, though I think she knew we were there. Luke claims she mouthed my name, but I never saw or heard it. The next day, Matt and I joined my Dad there at lunchtime, keeping company as he spoon-fed her pureed chicken and vegetables, urging her to swallow as she slept through the meal. His efforts were gentle, loving, and persistent, yet so futile. Why push her to eat, I thought? Why sustain a body whose mind has exhausted itself? Dad’s pastor arrived, told us about the St. Lucy’s Eve music at church, and asked us to join him in a prayer about letting go.

Outside, the sky is that pearl gray so common in Connecticut in December, when the icy, white sun never gets much past the horizon, even at midday. I think of John Donne’s “A Nocturnal Upon St. Lucy’s Day”:

‘Tis the year’s midnight, and it is the day’s,
Lucy’s, who scarce seven hours herself unmasks;
         The sun is spent, and now his flasks
         Send forth light squibs, no constant rays;
                The world’s whole sap is sunk;
The general balm th’ hydroptic earth hath drunk,
Whither, as to the bed’s feet, life is shrunk,
Dead and interr’d; yet all these seem to laugh,
Compar’d with me, who am their epitaph.
What a picture of morbidity! Donne compacts so much gloom into one landscape, only to suddenly invert its relative vitality: “compar’d with me,” this shrunken, dreary scene is bubbling with laughter. I measure the stick of my own melancholy against Donne’s and find mine wanting.

We stop in an Irish pub for lunch, with handsome woodwork and mismatched, faded velvet stools. I order a bowl of Guinness lamb stew—hearty, comfort food that quickens my appetite. We drink our pints and go on with the business of life, as Mom winds down hers.

Let me prepare towards her, and let me call
This hour her vigil

She didn’t eat that evening or the next morning. By early afternoon, when my sister and I stopped in to see her, she had been moved back to her bed, so she could be more comfortable. Her pulse was up to 134 beats a minute, she was running a fever, and her legs were turning blue. Mom has strict DNR (Do Not Resuscitate) instructions that prohibit feeding tubes, IV hydration, or even antibiotics. The nurses had ordered oxygen and morphine.

The end seemed nigh, yet she was awake and seemed to focus intently on us. Her wakefulness seemed like a gift—a last chance. When I said, “I love you,” she whispered, “I love you too.” My sister Elizabeth talked to her about not being afraid to let go and felt that Mom grasped her meaning. We called our sons to come back from their hike, and all six of them, ages 22 to 13, took turns alone with their Nana. Stoic and teary, they made us proud. I called Mom’s brother David, and put the phone to her ear so she could hear his voice. Dad arrived, hugged us, and held her hand. Later my brother Jonathan, his wife, and kids came in and sang her a lullaby. Jon, a trained EMT, hooked up the oxygen. We each said our goodbyes, believing, maybe even hoping, they would be our last.

The next morning, however, she had stabilized. She said “good morning” to the nurse and squeezed my father’s hand. Her fever was down, and though her heart rate was up to 150, her oxygen levels remained steady. We stopped in on our way back to North Carolina. I said goodbye again, this time leaning over and resting my head on her shoulder, feeling a warmth and softness that instantly transported me back to childhood, to the rocking chair in the living room, to her lap. I climbed back in the car, and in 12 hours, we were back home in Davidson.

Today, two days later, Mom remains “about the same.” Dad sits by her bedside, holding her hand; Sandy and Charles Wiseman drop in; my brother comes with a speaker to play some Gilbert & Sullivan for her; her nurse Emily—so loving, gentle, and attentive—checks on her; Hospice nurses measure her pulse and temperature; pastors offer prayers. And we wait.

Mostly it is my father who keeps vigil. As I imagine him there beside her bed, weeping and wracked with grief (he married her when he was 21! who is he? what is his life without her?), I think of another poem, from Tennyson’s In Memoriam:

Be near me when my light is low,
When the blood creeps, and the nerves prick
And tingle; and the heart is sick,
And all the wheels of Being slow.

Be near me when the sensuous frame
Is rack’d with pangs that conquer trust;
And Time, a maniac scattering dust,
And Life, a Fury slinging flame.

Be near me when my faith is dry,
And men the flies of latter spring,
That lay their eggs, and sting and sing
And weave their petty cells and die.

Be near me when I fade away,
To point the term of human strife,
And on the low dark verge of life
The twilight of eternal day.

Tennyson may be praying to God, but I also think he’s calling to his beloved friend Arthur Henry Hallam, to whom the long elegy, written over the course of 17 years, is dedicated. This is just one of 133 numbered cantos, all written in the same verse form but in different lengths, expressing the many shapes and stages of grief. When I searched for the poem online, I found another gorgeous, wrenching “Be Near Me” poem, this one by Faiz Ahmed Faiz:

Be near me now,
My tormenter, my love, be near me—
At this hour when night comes down,
When, having drunk from the gash of sunset, darkness comes
With the balm of musk in its hands, its diamond lancets,
When it comes with cries of lamentation,
                                             with laughter with songs;
Its blue-gray anklets of pain clinking with every step.
At this hour when hearts, deep in their hiding places,
Have begun to hope once more, when they start their vigil
For hands still enfolded in sleeves;
When wine being poured makes the sound
                                             of inconsolable children
                      who, though you try with all your heart,
                                             cannot be soothed.
When whatever you want to do cannot be done,
When nothing is of any use;
—At this hour when night comes down,
When night comes, dragging its long face,
                                             dressed in mourning,
Be with me,
My tormenter, my love, be near me.

That’s all I’ve got. This post may be overpopulated with poetry, but “When whatever you want to do cannot be done,/ When nothing is of any use,” that’s where I turn. Because, as Philip Sidney wrote in his “Apology for Poetry” (1595): “Dire sights, bravely pictured forth, do bring delight.” It is a delight—an exquisite pleasure and great relief—to find your own inconsolable torment expressed so perfectly by a perfect stranger.

Of Mere Being

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I’ve just returned from a much anticipated, much dreaded three-day sojourn in Connecticut, where I saw Mom for the first time in her new living quarters, an extended care facility called Arden Courts. My family had given me a pretty clear picture of what to expect, but they couldn’t prepare me for the emotional wallop of seeing her, dozing in the common room, wheelchair-bound, listing to the side, head tilted back, arms stiff, legs atrophied, feet puffy in her unused shoes. She rouses when prodded, but mostly stares off in the distance. When she looks at you, her brown eyes seem glazed, as if milk has been added to the coffee she always preferred black and hot.

In past visits, I  found it challenging and even amusing to analyze Mom’s speech as if it were modernist poetry, with its odd juxtapositions and parataxis. I got satisfaction from trying to piece together the associative logic of whatever constellation of phrases she managed to utter. What my poetry reading training didn’t help me with, however, was her performance of the poems. When she strained and grunted to get words out, it was so excruciating that my intellect and imagination failed, and I was wrecked by a complex of grief (desire to hold on) and desire to flee.

IMG_5516But now Mom scarcely speaks at all, and when she does, she is barely audible. There is no longer any trace of associative logic. Just flutterings of weightless words, like dust bunnies that hop away when you try to sweep them into a dustpan. Language eludes her going in as well as coming out: she got no pleasure from listening to me read Jane Austen aloud. She seems remote and distant, like a cuckoo tucked away in an elaborately carved wooden clock. She chirped up when I talked about her grandsons, Luke, Thomas, and Zac, and she sang along to a couple of children’s songs that she used to sing to them at bedtime, “Jack Was Ev’ry Inch a Sailor” and “Edelweiss.” She couldn’t get out all the words, but her sweet, pure voice came through here and there, marred only by my quavering pitch.

Although she said little, she knew who I was. When I told her I loved her on the first day, she replied, “I love you, too, Suze.” On the second day, she didn’t seem to recognize me, but on the third, when I said, “Do you know who I am?” She said, “Of course I do.” “Who am I?” “You’re Suzanne Churchill.” When I cried (admittedly often), she smiled more, as if trying to cheer me up. Her strongest sentence, the one she can articulate most clearly and at appropriate times, is: “I love you very much.” One could do worse for famous last words.

It was hard to see her so altered, hard to realize that her caregivers would never know her as she had been—a lover of books and music; intellectually curious, meticulously dressed, and sociable; an ardent wife, devoted mother, loyal friend, anxious perfectionist.

Mark Olsen and Will Scheffer, creators of the HBO series “Getting On,” talk about these hard losses in an interview with Terry Gross on NPR’s Fresh Air. The show (which I haven’t seen but want to) is set in a women’s extended geriatric care facility, and the writers draw upon their own experiences caring for their aging mothers. Olsen’s description of his grieving process struck a chord:

I had that poetic little moment that was quite narcissistic that, oh my God, there will come a day when she says I love you for the very last time. And that was sort of my self-involvement with it initially.

But over the course of those years, I certainly learned that – that day did come, certainly, but the relationship did not die in any way, shape or form. It continued and progressed and had great value. … but when my mother finally lost the capacity to speak – because she was a very articulate woman, a very verbal woman with a very storied past – when she lost that ability to speak, and she was left with caretakers, it saddened me tremendously.

And it didn’t matter who the caretaker was, good caretaker, bad caretaker. It didn’t matter – that they would never know who this woman was.

That’s the bald reality of dementia: so much just doesn’t matter anymore. Even if her caretakers could know who she was, she wouldn’t know the difference.

You’d think losing language would make it harder to be with Mom, but strangely, I found it easier. My plan had been to visit twice a day, stopping in for a few minutes on my way to do research at the Beinecke Library and again at the end of the day. I thought short visits would be better—and probably all I could bear.

But now that she can barely speak, the only thing I can do is be with her, sitting beside her repeating stories about my life and hers, holding her hand, wheeling her around the halls and courtyard, and breathing with her when she gets agitated. An hour passed yet I had no desire to leave.

I didn’t understand my strange sense of quietude until I heard Will Scheffer’s explanation on Fresh Air:

I think what caring for our mothers really taught us, all the way up through the hospice experience was…that this part of life… that so many people are afraid of, and for good reason, it’s kind of a privilege to be able to be there when you can.

…that act of carrying on conversations with someone who can’t speak to you and being with them as they’re dying, there was a kind of sense of privilege that we began to feel and sort of a sense that gosh, you know, I was so afraid of this, I didn’t want to do it. I didn’t want to be here.

But being here is starting to feel like a good thing, a good part of life, something that we avoid in this culture but that actually is a rich experience, albeit painful. It actually is so much a part of life. And so many people never get to be in it.

I didn’t want to be here either. None of us did. I only get to be in it with Mom for a a handful of visits, a few times a year, so it is a privilege—”a rich experience, albeit painful”—to be with her as she withdraws, as her brain shrinks and the channels widen between its folds. As she diminishes into a state of mere being, all I can do is be with her—just be. That’s what my yoga teacher, Amy Schneider, invites us to do; she asks us to set aside our thoughts and feel “how good it feels to just be.” It’s a kind of meditative state, this mere being, one that makes me wonder what it feels like to be Mom, as she reaches the end of cognition and finds herself on the outskirts of language.

Wallace Stevens tried to imagine this state in his late poem, “Of Mere Being”:

Of Mere Being

The palm at the end of the mind,
Beyond the last thought, rises
In the bronze distance.

A gold-feathered bird
Sings in the palm, without human meaning,
Without human feeling, a foreign song.

You know then that it is not the reason
That makes us happy or unhappy.
The bird sings. Its feathers shine.

The palm stands on the edge of space.
The wind moves slowly in the branches.
The bird’s fire-fangled feathers dangle down.

~Wallace Stevens, 1954~

PiB_PET_Images_AD
PET scan of a brain with Alzheimer’s.

Stevens combines gleaming imagery and gorgeous alliteration to transport us beyond reason and emotion into a realm of pure sight and sound. I try to imagine what it’s like in Mom’s mind—”at the end of her mind,/ beyond the last thought.” She is moving to a state “without human meaning, / Without human feeling,” and it’s a “foreign song,” one I don’t understand and can’t sing. But there is a kind of grandeur to the utter, defiant loneliness of “mere being,” a primal beauty in the isolate calm. When Mom stares out into the distance, maybe she is seeing “fire-fangled feathers dangle down.” Or maybe she sees nothing at all. In any case, it is good to just be with her.

 

You Don't Get What You Pay For

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One thing we’ve learned about Alzheimer’s care is that you don’t get what you pay for. Quality of care doesn’t correlate to cost of care.

For instance, my Mom was getting excellent care in the assisted living wing of the retirement village she lived in, a few buildings away from my Dad’s apartment. The facilities were lovely: she had a spacious, private room with an elegant seating area composed of Aunt Opal’s Queen Anne furniture. The staff was friendly and supportive, offering daily activities and keeping the place and residents clean and comfortable.

Despite the good care, in less than six months, Mom started falling. One of these falls happened when she was trying to stand up from a chair to her walker. She fell on her knee, fracturing her femur at the hip joint. From there, she went to the hospital, to surgery, and to the rehabilitation wing for physical therapy, costs mounting every roll of the wheelchair.

In physical therapy, she failed to make enough progress for the doctor to clear her for weight bearing activities, so in one of the great ironies of advanced modern medical care, the staff stopped exercising her, and the insurance company refused to pay for any more physical therapy.

Mom was left to lie in bed or lifted to sit in a chair. I don’t have photos from this hospital stay, but my sister’s report etched a vivid mental image of Mom slumping, bra-less in a loose shirt and stretch pants, her hair unwashed,  no makeup or jewelry, listless and incoherent. For my mother, who always cared so much about appearances, her unkempt state must have been viscerally disorienting. She could not have felt like herself. The physical inactivity further assaulted her cognitive functions, since, according to my friend and colleague Dr. Kristi Multhaup, an expert in the psychology of aging, the single most important thing you can to do improve cognitive functioning is to get aerobic exercise.

Fortunately, my watchdog Dad intervened and managed to get her more physical therapy. Eventually, she was approved to move back to the assisted living wing—provided that he hire a private caretaker to assist her 24/7, which would make the total cost of her care $20,000 a month. Obviously, this was untenable.

Never fear, the retirement facility assured us, we can offer a more affordable option: a quad room in the nursing wing could be had for a mere $12,000 a month. Even if we could afford this option, the idea of my Mom sharing a room with three strangers in a dreary facility whose halls smelled faintly of urine was appalling. Dad considered moving her back into his apartment. My sister and I pounced on that idea like two lionesses competing for the kill. No way.

10710561_4824328502323_3763052288889681166_n Then someone told Dad about another facility, Arden Courts, a  home for people with dementia in Hamden, Connecticut, about 20 minutes away and, coincidentally, across the street from Whitney Center, where my godmother Millie Reilly lived out her last days with Alzheimer’s. In this cheerful, clean, smaller facility, Mom could have a private room for $6000/month. For less than 1/2 the cost charged elsewhere, at Arden Courts, they dress her beautifully, do her hair, encourage physical activity, and make sure she participates in other activities. Even the food is better. You can see from this picture how lovely she looks, brightening with delight at a surprise visit from my brother and her youngest grandchildren.

Mom’s situation is not unusual. According to Jane Brody, the “quality and extent of services may still vary widely” among dementia wings in nursing homes. The price also varies, in no direct relation to the quality of the services.

As good as Arden Courts is, $6000 a month is hardly a bargain rate, and we are very lucky that Mom has long-term healthcare insurance. Others aren’t so lucky: my neighbor’s cousin just visited from New Hampshire. Her mother, who has Alzheimer’s, is being cared for by her 89-year-old father. She works full time and drives 1 1/2 hours round-trip to check on them every other day. New England winter weather only makes the drive more imperative, since she must shovel their driveway so that her father, who still drives, won’t slip and fall. They have no long-term health care insurance and can’t afford the kind of care my Mom enjoys. So the other lesson Alzheimer’s teaches us is: you don’t get what you can’t pay for.

AlzheimerscostofcareThere is a gaping hole in Alzheimer’s care, and at some point, we’re going to need to address this as a society. People are living longer, and people are living longer with Alzheimer’s. We need to find ways to make Arden Courts available to all families suffering from the ravages of this illness.