Love and Dementia

One Benefit of Dementia

Alix Kates Shulman — Mon, 14 Sep 2009 17:25:11 +0000

Sweetheart that he is, my 80-year-old husband is usually very cooperative, despite severe dementia resulting from a traumatic brain injury suffered five years ago. But for the last year or so, he has recoiled from anyone, including me, who approaches him with a sharp instrument, making such normal grooming acts as nail clipping and beard trimming, as well as necessary blood drawing, all but impossible. Consequently, his toenails were so long they were like knives, one even cutting into the neighboring toe until it bled.

Once I saw blood, I felt I had no choice but to call the podiatrist, who makes house calls to patients who can't walk or who have dementia.

On Scott's geriatrician's instructions, in preparation for the visit, I tried out a valium-type drug a few days in advance, in order to determine the right dosage. Because of the danger of falls, often life-threatening to the elderly, it had to be the minimum dose to do the job.

An hour after swallowing the pills, Scott was barely able to walk to our bed, where he quickly fell into a sort of twilight sleep. He was so woozy that I was actually able to cut his fingernails. Not that he didn't half-heartedly object as I did so, but he was too doped up to stop me.

Continuing the experiment, I also seized the moment to clip his mustache, which had grown down over his top lip, making eating a messy affair. During President Obama's health-care speech I sneaked the scissors up, snipped a few mustache hairs at a time, then hid the scissors, while Scott swatted vaguely at my hand. I felt like Harpo Marx.

Finally, yesterday, one and a half hours after I gave Scott the meds (same dose and time frame as before), the podiatrist arrived. Scott was dozing on the bed. But as soon as the doctor started in on his feet, my husband, who had been an accomplished athlete in his youth, got a massive infusion of strength and an impressive supply of curses, which he continued to hurl all through the clipping. It took four of us, using all our strength, to get the job done: the doctor, my son, Scott's aide Gloria, & me. I held his legs, while Gloria and my son--who can usually calm Scott by talking to him, but succeeded only intermittently on this occasion--each held an arm.

Clipping completed, the doctor pulled out a small, battery-powered file to use on the thickened nails, and despite the noise, Scott calmed down. The minute the procedure was finished, he completely forgot that anything had happened--one of the benefits of dementia--and reverted to his sweet self. A few minutes later he was asleep again.

Whew! It's done! But the doctor says we must repeat this task every six weeks--next time, he admonished, before the blood appears.

PS: The paperback edition of my memoir about caring for Scott--To Love What Is--was published this week.

Could Happen

Alix Kates Shulman — Thu, 12 Feb 2009 22:39:50 +0000

Before the accident that left him like someone with advanced Alzheimer's, my husband was an artist. After the severe injuries to his brain's frontal lobes, centers for the "executive functions" that enable us to conceive and carry out plans, he found it difficult to make art. Hoping to get him drawing again, I fixed up an "art table" and, as suggested by an art therapist, sat with him for at least ten minutes a day while he drew.

Some of Scott's post-fall art was continuous with his previous work, but most of it was unlike anything he ever did before-especially the group of drawings consisting of one or two words fancifully drawn in many colors and designs: Why?; Why not?; Yes; No; Yes No; Maybe; No!; Yes Yes Yes; OK; OK Maybe; Could Happen .

Are these the questions he pondered as he lay on the couch looking off into space? Are these the concepts his injured brain had to grapple with? I can think of no drawing or painting from before his fall that depicted words, much less such primal words as these. His new drawings stripped reflection down to its essentials: why, why not, yes, no, maybe-so much simpler than the first post-fall writing he produced for the speech therapist at the rehab hospital:

The Earth is the central organizer for thoughts, concepts, and progressive deeds.

Our births are real but our deeds are very random.

The therapist saw in these sentences only the disorganized ramblings of a mind afflicted with fluent aphasia, but to me they seemed reassuring, revealing that he was still capable of deep reflection. To atheists like us, the Earth, that is, the intractable world of matter, is indeed the basis or "central organizer" of consciousness-meaning "thoughts and concepts." Our births are real, but after that, all bets are off. Once you are in this world, randomness rules-look at what happened to him! Just so, the new drawings-Yes, No, Why, Could Happen-seemed to summarize the lessons of his accident: Anything can happen at any time, nothing is guaranteed.

When he had made enough of those startling new drawings, I decided to exhibit them in an empty loft in our building.

Of the sixty people who came, most hadn't seen Scott since his accident. He pretended to recognize each one. When they expressed delight at how surprisingly well he looked, he had no idea what they were talking about. But he was able to answer each question as if his response bore some relation to the truth, and they never guessed his disability.

That night and the next day, while the art remained up, he kept thanking me and saying how happy he was. But after the show came down, he had no memory of it, not even that it had occurred. And I had to face the recurring question: Was it worth the effort? If so, for whom? I had thought it was for him, but if he remembered nothing? Then was it for the guests, who were misleadingly reassured about his condition? For me?

The Thriller

Alix Kates Shulman — Sat, 07 Feb 2009 05:02:02 +0000

The summer I turned fourteen, I spent a month at the Lake Erie resort town of Cedar Point, with a friend whose parents ran a food concession on the boardwalk, which boasted the highest roller coaster in Ohio. It was called The Thriller and I fell in love with it. I hung around it so much that the daytime manager, seeing my passion, eventually allowed me to ride for free in the mornings, when there weren't many customers. One day I decided to see how many consecutive rides I could clock without stopping and rode for two and a half hours straight. Even so, the thrill of the slow clank to the top followed by the heart-stopping plunge to the bottom continued unabated.

After I had children of my own, my reckless daring gradually disappeared until they could not induce me to accompany them on the big rides, or eventually the small ones either, until finally I swore off all of them-a not uncommon side effect of responsibility. Now I wonder if my youthful fearlessness and love of danger didn't somehow prepare me to deal with the traumatic brain injury my dear husband suffered more than half a century later, that left him like someone with advanced Alzheimer's. Dealing with his accident (a fall from a sleeping loft) involved a similar extreme alternation of anticipation, tension, terror, and relief. With Scott himself no longer capable of either hope or dread, I took the ride for us both, clutching the sides, holding my breath, screaming as we fell, hanging on for dear life, bracing for the next slow uphill climb.

On the Thriller, the exhilarating build-up of terror and relief kept me in a state of hermetic equilibrium, which didn't subside until the moment I returned, wobbly and off balance, to terra firma. Just so, every time I left the enclosed world of Scott's accident for the world outside, my precarious stability broke down.

After a full year had passed, and I realized I must abandon hope for his recovery and adapt to what is (as I recount in my new memoir, TO LOVE WHAT IS), I felt stable again. But when his mind took an unexpected turn for the better, hope returned, and the terrifying roller-coaster ride I had thought was over started back up.

One minute he was lying on the sofa as usual, looking up at the Japanese paper lanterns hanging from the ceiling, and the next minute he was pushing himself up to standing, rolling up a newspaper, and waving it at the lanterns to stir enough air to move them.

I stood transfixed at this first display of initiative since his accident. He had a desire, transformed it into a plan, and remembered it long enough to execute, though he gave up before succeeding.

"What were you doing just now?" I asked.

"Trying to get those lanterns to move, but it didn't work."

"It will when you're stronger," I said, and ran to email a report of this momentous event to friends and family, full of renewed hope.

The Dance of Experience and Time

Alix Kates Shulman — Mon, 22 Dec 2008 04:08:02 +0000

Before Scott, my beloved husband, fell from a sleeping loft, sustaining the devastating traumatic brain injury that transformed our lives, I divided experience into two distinct kinds, both of which any satisfying life depends upon. The first consists of those pleasurable transitory experiences, often sensual--like eating, sex, art--that quickly vanish. The second is the kind of stable, future-oriented experience you build upon--work accomplished, knowledge accumulated, habit inculcated, skills expanded, resources conserved.

But at some point in a long life the future begins to seem increasingly illusory, or at least a bad bet. Keep accumulating knowledge, conserving your eyesight and your money--for what? At that point it may be time to forget about self-improvement and start to read only what grabs you; ignore the calories and pig out; stay up listening to music half the night; take in a movie in the afternoon.

I had begun to brood on this dilemma back when we entered our seventies, wondering if the time hadn't come to start rebalancing our accounts by turning our sights from the future to the present and ourselves from ants to grasshoppers, who--face it--probably have more fun. As addicted as ever to hope, which always faces forward, and with no diminishment in energy despite my age, I knew it might take considerable effort to pull off such a change, but I was ready to give it a try.

Then, with Scott's accident (as I recount in my memoir TO LOVE WHAT IS), the longstanding relationship between present and future in our lives abruptly collapsed. Whereas I, fixated on healing him, examined minutely everything he said or did for its bearing on his eventual recovery, he, whose disability left him ignorant of the day, the month, the season, the year, and unable to remember the previous moment or think ahead to the next one, could conceive of nothing but the immediate present. Which meant that the kind of experience he had spent his life accumulating in order to expand his capacities became impossible for him, just as abandoning myself to the pleasures of the moment became impossible for me.

Dancing, for example, which I'd always done for the sheer instantaneous joy of it, became for me primarily a means of exercising his muscles to build up his strength. Instead of each of us partaking of both kinds of experience, as we always had, after Scott's brain injury I found we had no choice but to divide the two kinds between us, forcing me to abandon any carefree sense of time and forcing us both to inhabit disparate time frames. With his short-term memory completely shot, he dwelt in the present moment, while I, focused on the prospect that my efforts would heal him, found myself living in and for the future. Which meant that from the time of his accident on, we were permanently out of sync, except on those rare occasions when we came together to rendezvous in our common long-term past.

How to Survive in a Hospital and Fire a Doctor

Alix Kates Shulman — Fri, 21 Nov 2008 21:51:32 +0000

To continue the story of my memoir, To Love What Is:

After six weeks in a Maine ICU, my husband, Scott, who suffered traumatic brain injury (TBI) after falling from a sleeping loft, was flown to NYU Hospital in New York for rehab.

Rehab? On his first night there he fell off a gurney, causing new brain clots.

(Second impact syndrome: "When a person sustains a second brain injury before the symptoms of the first have healed...the second impact is more likely to cause widespread damage...[including] rapid death.")

How could this happen? Explanations come in passive voice. He "was left" on a gurney awaiting a test and "was found" on the floor. The hospital concedes that it "erred" by leaving him unguarded, and should have given him a red bracelet indicating "safety issues."

Yet not even a red bracelet or one-on-one care can insure his safety. One week later, I return from the cafeteria, where I'd gone while he slept, to find his bed empty. My stomach lurches; I rush to the nurse's station.

"Where's my husband?"

In the Swallowing Lab on three for testing--"but don't worry," says his nurse, "I sent an aide with orders not to leave him."

In a flash I'm on those stairs, taking them two at a time. I dash through a long hallway to the Swallowing Lab just as the lab assistant is leaving. Unaware that Scott can't follow instructions, she's left him unattended on a very high chair before the X-ray machine. Twenty minutes pass before anyone returns.

Why is there no safety warning on his chart?

Where is the aide who was instructed not to leave him?

When I find her in the visitor's room, she says she was ordered to wait there, and how could she, a mere aide, protest?

Now I'm a lioness stalking prey. I question everyone I see--lab assistant, receptionist, nurses, doctor. Not one was aware that Scott needed guarding.

Later, while I'm voicing a complaint about one doctor to another, I discover that I may discharge anyone I choose. Armed by this revelation, I begin to fire incompetents.

First the psychiatrist, who has declared Scott "depressed" after one minute's observation of him lying listlessly in bed and one question about his appetite.

When I ask how he can diagnose depression on the basis of a single question. he says, "It's not based on that alone. I can tell he's depressed by his facial expression."

For a TBI patient with a breathing tube in his windpipe, who cannot walk, who is down fifty pounds, and who doesn't know the month, the year, where he is, or his own daughter's name, lack of appetite and his facial expression reveal his problem to be depression?

Fired.

A week later I take on the clueless psychologist, whose fast, mumbled speech and refusal to make eye contact with Scott make it impossible for him to understand her test instructions, leaving him frustrated and angry.

Fired.

Finally, I confront the nurse who sent him upstairs without adequate precautions, the same nurse who was in charge the night he fell from the gurney.

Fired.

I can hardly wait to get Scott home.

Age, Trauma, and Contentment

Alix Kates Shulman — Fri, 14 Nov 2008 19:09:00 +0000

Unaware of his accident or his dementia, my husband attributes his lack of short-term memory--the result of a traumatic brain injury that left him, at 75, like someone with advanced Alzheimer's--simply to aging.

At first I dismissed the idea that his age had anything to do with it. A calamitous mishap like his fall from our sleeping loft could occur to anyone at any time and just happened to tear into our lives in our seventies. But the more I think about it, the less sure I am. Can it be because of his age that the fall occurred that summer and none of the previous fifteen summers when he slept on that balcony and didn't fall? Old people famously fall. Though it's his injury, not his age that has destroyed his memory, perhaps age can't be entirely ruled out either. It's well known that an aging brain is more vulnerable to decline than a young one, even without a disastrous fall, and that a blow to the head at any age can precipitate future dementia.

The truth is, until the accident, four years ago, I never thought of either of us as old, an adjective that might apply to other people in their seventies, especially those I read about in novels or obituaries, but not to us. We didn't act old, didn't look old (at least not to each other), didn't think old or feel old. As always, each morning he went off to his art studio and I to my writing desk--not without, to be sure, some of the usual vicissitudes of septuagenarian life, annoying memory lapses, thinning hair, bones getting fragile, new sags and wrinkles unexpectedly appearing. And we had taken care to put our affairs in order--made our wills, advised our children of our wishes, rationalized our financial accounts. But in truth, we had first made wills when we were young, when our children were born. And the wrinkles and lapses of memory too had begun in our youth and accompanied us on every step of the way, along with our share of broken bones and progressive hair loss--all unremarkable, ubiquitous. Then out of the blue came that trauma, and we were suddenly plunged into old age.

"Can you believe how old we've gotten?" he exclaims as he rests on our bed while I dress.

"I know. It's hard to believe."

"But actually, I'm finding it rather enjoyable, aren't you?"

"Right!" I laugh. "No more of that restless striving or vain ambition."

"And we know so much by now," says the man who knows so little.

I give myself a shake. If he, with his disabling deficits, can hold fast to his lifelong habit of contentment, then I, without them, must find it in me to master sorrow and do the same.

The Accident

Alix Kates Shulman — Fri, 31 Oct 2008 15:14:13 +0000

One day it happens, the dreaded event that will change your life, the more ominous because you don't know what form it will take or when it will occur. To me it happened on July 22, 2004, at two a.m. on a Maine coastal island in a remote seaside cabin, with no electricity, plumbing or road, when my beloved husband fell nine feet from a sleeping loft and injured his brain.

Earlier that evening, he and I, having traveled all day from New York by bus, ferry, and on foot, carrying backpacks of summer supplies across the long beach that separates our house from the nearest road, had climbed up to our sleeping loft exhausted and fallen directly asleep. Suddenly I was jolted awake. Beside me, our bed was empty. "Scott?" No answer. Louder: "Scott?"

I shined my flashlight down to the floor below. There he lay, the man with whom I'd first fallen in love in 1950 and had shared my life for the past twenty years, curled up like a fetus, naked and deathly still. I grabbed my cell phone and called 911.

A great pounding, and the door burst open. From every corner of the island the volunteer fire and rescue team filled the cabin with their bristling energy. As they left moments later carrying Scott's stretcher, I scrambled to put on my sneakers and follow them down the rickety stairs, across the fogbound beach, to the fire truck waiting where the road begins-and off we raced across the island to the dock to meet the fireboat that had been summoned from Portland. As we headed out to sea, I gazed back at that carefree world where life proceeds by days and nights, instead of minute by terrifying minute, knowing we'd left it behind forever.

"It's going to be a very bumpy road before your husband's in the clear," warned Dr. Cushing, head of the hospital trauma unit, after X-rays revealed that Scott had fractured many ribs, punctured both lungs, and sustained multiple blood clots on his brain. "It could be a year or more before we know the extent of the damage."

A year! Somehow, I took this to mean that Scott needed a year to heal. Deaf to the true meaning of the doctor's words-that nothing could be predicted-I embraced Scott's recovery as my purpose, my mission, my calling.

But by the first anniversary of his fall, it was clear that though his bones had healed, his brain had not-and probably never would. His short-term memory and cognitive ability were so damaged, and he was so thoroughly disoriented in space and time, that he could never be left alone. My goal-and our lives-would have to change.