Don’t Stop Asking About My Mom

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I have a message for my mother’s friends, family and acquaintances: She’s still alive.

My mother’s heart still beats. Though she might not be able to talk to you, walk with you, or share a laugh with you, she’s still here. She’s still alive.

If you spend any amount of time with her, you’ll quickly realize she’s here…………. and like most living, breathing human beings, she craves touch. Hold her hand. I do. Yes, it’s hard, especially when she yells out; I hate watching my mother’s face contort in such a way that it looks like she’s in pain. I know she can’t be……… but maybe, she knows. Maybe she knows she’s trapped inside a body that won’t follow her commands.

It’s a muggy Sunday afternoon when I visit my mom……….. it’s just after noon and she’s eating (or rather drinking) her lunch. The caregiver asks if I want to spoon-feed her the rest of her liquified meat.

Next time someone talks to you about the preservation of human life, try thinking about the thing that really matters at the end of the day: quality of life. Or how about this: DIGNITY.

Midway through her meal of watery green goop and off-white, milky muck, she chokes and coughs. Brownish goo comes flying out of her mouth and splatters all over my green shirt.

I start to feel angry……. not at her, rather at those who have forgotten her. Her family and friends………….

My mother did so much for so many people………. When the church would call, she would pray, she would volunteer to give communion to the sick, she would give of herself. When her family called with a crisis, she would pray, she would provide the means for them to literally have a better life…………. And now, she’s alone.

No one asks for her, really…………… On her birthday, there were no calls, no e-mails. Nothing. It was another day for the rest of the world.

After lunch, I take her back to her room. Her fingernails are too long………. I ask the nurse for a pair of clippers and start trimming. It isn’t long before my back starts to ache and my abdomen cramps just a little………. I’m hunched over, just inches away from her hand. Fingernails fly up and flick my face.

Her toenails are another challenge. They’re twisted……. they overlap and are stiff from lack of use………

I need to remember to bring nail polish remover next time. The gold paint I swiped over her toenails last spring still remains……………… was it last spring; has it been that long? Am I the only person who paints her nails? UGH.

My body twists and contorts so I can find just the right angle to trim her thick toenails. Mom is sound asleep. Good. I think she’d be yelling if she where awake.

She inhabits a place somewhere between life and death.

It’s a grotesque place.

By the time I leave, I have a headache and my blood is boiling. I feel nothing but hate and resentment. I know I should let it go…………………. After all, what’s that saying? Something about hatred poisons and hurts me, not them?

I don’t care. Shut up. Stupid quote. Nonsense. This is unforgivable. Where’s a vengeful God when you need one? Fire. Brimstone. Come on!

After a few days of stewing, the anger eventually subsides……………. is it anger? Maybe it’s hurt. Resentment? Rage? Jealously? Contempt? All of the above. I try to cut myself some slack……………… yes, I wish I could be more serene about her illness………….. but then, I think back to those darker days, and the anger bubbles up again. STOP.

I wonder if there is a heaven………………or a hell. I wonder what God will decide.

I wonder if He stopped asking about my mom, too.

 

The New Yorker Magazine Talks About Dementia

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This week’s New Yorker magazine features a fantastic article by Rebecca Mead called, The Sense of an Ending. I encourage you to read this article, which talks about innovative ways to care for people living with dementia. The star of this story is Tena Alonzo, the director of education and research at the Beatitudes Campus in Phoenix. If you remember, Tena shared her insights about placing a parent with behaviors in an assisted living facility or nursing home with this blog.

Also, please check out Phillip Toledano’s photographs of dementia.

Last summer, Frederick C. Hayes was admitted to the advanced-dementia unit at Jewish Home Lifecare, on West 106th Street. It was not an easy arrival. Hayes, a veteran of the Korean War, had been a trial lawyer for five decades. He was tall, and, though he was in his early eighties, he remained physically imposing, and he had a forceful disposition that had served him well in the courtroom. One of his closest friends liked to say that if things were peaceful Hayes would start a war, but in war he’d be the best friend you could have.

Hayes practiced law until 2010, when he went to the hospital for a knee operation. While there, he was given a diagnosis of Alzheimer’s disease. His combative tendencies had become markedly pronounced, and before arriving at Jewish Home he was shuttled among several institutions. Nobody could manage his behavior, even after Haldol, a powerful antipsychotic drug, was prescribed. In the advanced-dementia unit, he appeared to be in considerable discomfort, but when doctors there asked him to characterize his pain, on a scale of one to ten, he insisted that he was not in pain at all. Still, something was clearly wrong: he lashed out at the nurses’ aides, pushing them away and even kicking them. It took three aides to get him changed.

One day in September, a woman named Tena Alonzo stopped by Hayes’s room. Alonzo, the director of education and research at the Beatitudes Campus, a retirement community in Phoenix, Arizona, found Hayes lying in a hospital bed that had been lowered to within a foot of the floor, to lessen the risk that he would hurt himself by falling out of it. His face was contorted into a grimace, she later recalled, and he writhed and moaned. Alonzo, who is fifty-two, has spent the past twenty-eight years working with dementia patients—or, in her preferred locution, with people who have trouble thinking. She crouched next to the bed, and spoke in a quiet, intimate tone. “I’m here to help you—do you hurt anywhere?” she asked, moving her hand gently over his chest, his abdomen, his arms and legs. With each touch, she asked, “Do you hurt here?” When her hand reached his belly, the moaning ceased and Hayes spoke to her. “I hurt so bad,” he said. “I promise you, we are going to fix this,” Alonzo said, and he thanked her. . . .

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Benjamin Button Effect: What Do You Do When Your Mom Cries Out Like a Baby?

3728905329_4b47a1b5cc_bIt was around 8pm last night when I started watching some of the videos I had taken of my mom. In the more recent ones, she is yelling — a lot. That’s all she can do. She can’t talk. I take these videos because, I feel like people don’t believe me when I say, ‘I think she’s in pain.’ And because past is prologue — I once had to show my video of her crying to the nurse at her home and the hospice team in order for them to give her morphine and up her Haldol — I take videos so I am always armed with evidence.

 

And they wonder why caregivers lose their minds…………………………

As I watched these videos of her yelling, her face twisted and anguished, I told my boyfriend who was watching these 30 second snippets with me, that someone in my support group said that mom probably has the mental awareness (she used a different term, I think) of a baby.

Haven’t you ever seen a baby cry? 

No. I mean yes, but not really. And if I happen to be around someone with a baby (which is rare), I give them back as soon as they take that long inhale right before the wailing commences…… and then I walk away. The fact of the matter is, I never grew up with or around babies.

I’m certain, as a kid, all of my imaginary friends were successful professionals in their 30s.

So last night, as I watched mom yell…. I pulled up YouTube and typed, “crying babies.” I probably watched four or five videos of little sweet faces, completely twisting and turning beat red, as they cried…….. puffy lips quivering, eyes squinting, tears rolling down their tiny faces. Believe it or not, I could actually see a little bit of my mother in those faces. Her mouth turns upside down into a frown, her eyes squint and she’ll start yelling………………………. Sometimes a hug will calm her down; sometimes you have to let her yell it out. My mother can’t tell me what’s wrong, so you do what you would do with a baby — you do a mental checklist:

Is she wet?

Is she hungry?

Is she thirsty?

Is she comfortable?

Is the music too loud?

Is she cold?

I always joke that if I have a baby — barring any health issues — it’s going to be a walk in the park. A total breeze. After all, you can pick them up to comfort them, You can take them with you in one of those neat backpack thingies, you can arrange them yourself so you know they’re comfortable, their poop is much more manageable (even cute?), diapers are much easier to get on and off, bathing is a no-brainer and, and up until a certain age, you’re stronger than they are, and best of all, they eventually learn to tell you what they need, and maybe, they’ll even make you laugh……………….. and that’s what makes it all worth it.

Or at least that’s what I think. I have three cats and a dog.

There are very few joys attached to reverse parenting. You have to work very hard to find the funny. You also have to mentally force yourself to view your circumstances differently (or die trying, because this disease will kill you, too): This is a choice, this is a priviledge to help my loved on on this horrible journey, I get to do this, I get to play this role in my parent’s life. This will pass. 

It’s also a very lonely experience. Unlike parenting a newborn, very few people come out to celebrate your achievements — hey, I heard your mom didn’t spit in church today! That’s AWESOME! Here are some flowers — in fact, I feel like as each day turns into the next, seasons change, birthdays come and go, babies are born, babies learn how to walk and talk, you’re mostly forgotten about. People move on. That’s life. That’s the point of life.

We’re not meant to live in some damned and demented limbo-land.

And you people want to live to be 150 years old.

The mere thought of living to be 150 years old makes me want to cry.

>>Flickr pic by Chalky Lives

The Good News: You’re Going to Die. The Bad News: Death Has Bad Breath & If You Have Dementia It’s Worse

Me & mom. Another day.

If you’re reading this blog because you have a parent dying from Frontotemporal dementia, I have bad news: things are going to get worse. That is a fact. No point in sugar coating the truth, right? There is no happy ending, no light at the end of the tunnel (unless you accept death as light), no hope, and no cure. Nothing………………………… says the glass-half-empty-girl.

There is only suffering.

What your providers will tell you as you progress further down the demented rabbit hole, is that “this” is harder on the families…………….. maybe they’re right. I’m not a doctor. I’m a daughter. Still, no one knows what my mother feels, what she may or may not be experiencing or sensing……………………. and no one tells you the truth: it’s going to get worse.

Worse for me was the yelling (well, worse this quarter because it has been much, much, much worse in previous months and years. See: Geriatric psych ward). My mom can’t talk. She yells………………….. AAAAHHHHHHHHHHHHHHHHHHHHHH!!!!!……….. always yelling. She still yells, not as much thanks to Hospice. We didn’t know if the yelling was due to pain, the disease, or some form of communication…………………………. an FTD expert from the Banner Alzheimer’s Institute would tell me that yelling is very common at the end stage……………………… Still, it’s an awful thing to witness. How do you comfort a 75 year old woman? What do you do? You can’t pick her up and cradle her………….. yes, you can hug her and hold her and lose your hearing at the same time, but what can you really, truly do. She is slowly dying. This is how she’s going out. I felt incredibly helpless. Totally alone. On October 31, I snapped. I did not want to carry this burden any longer. I wanted off the Titanic. I was ready to dive head first into freezing waters. As I sat in bed, I thought, ‘a plane crash would be a good way to go. Quick. I would just shut my eyes and go. That sounds nice.’

The thought of ending my own life on a 747 over the Pacific faded real fast with a good night’s sleep, which, for me, is sometimes all it takes. Of course, just because I got a grip doesn’t mean I don’t want off the doomed Titanic. I do. Very much so. But in order for me to actually get on a lifeboat, my mom has to die. And that is an interesting thought to contemplate……………………………. I often think about death. A lot. How could I not? I can smell Death’s breath……………………………….

So back to the plane crash…………………… I from time to time, try to put myself on that plane. To breathe in the fear, to imagine what would happen to me on impact………………… would everything just go black like the season finale of the Sopranos? Or is there something else waiting for me……………………. for you? Is there really a light?

I don’t have children, so I can take the time to do this, while reading the New Yorker.

Death is not a great conversation starter. People don’t like to talk about it. It scares them. Everyone turns incredibly awkward and you’re the asshole who started the conversation. Really, the thing is, most of us are wired to live — to survive. We don’t want to die because we have something to live for. Like children or grandchildren, a fabulous career or a cute cat (or two).

The Dalai Lama talks about death and contemplating death in his book, Becoming Enlightened, so I feel like I’m in good company when I think about a commercial jet nose-diving into shark-infested waters.

To make us mindful of death, the Buddha taught meditation on death. If you are mindful of death, you will be drawn into thinking of many things, particularly whether there is life after death. Even if you suspect that there is, you will take interest in the quality of that life — what it might be like.

This will lead you to think about Karma, the cause and effect of action, thereby drawing you away from choosing activities of harmful nature and encouraging you to engage in activities that are beneficial. This itself will lend your life a positive purpose.

If you try to avoid even the mention of death, then on the day when death comes, you may be frightened. However, if you contemplate the fact that death happens naturally to all living beings, this can make a big difference. When you become familiar with death, you can make preparations for dying, and decide what you should do with your mind at that time. On that day your preparation will have its effect; you will think “Ah, death has come,” and you will act as you had planned, free from fright.

I think he is right. However, while we can mentally and emotionally prepare for death and act of dying (which can take a long time), we physically cannot help ourselves along the way (unless we live in Oregon)………………………………… we cannot die with dignity………….not even one ounce……………………. dying is a family affair, and if an individual is dying from a terminal disease, they should have the right to end their life. But, then, that’s another story. Dying is like arm wrestling with the devil. You fight hard to win, but you know you’re going to lose. Witnessing death ravage your mom evokes a pretty similar response: you want to make your mom as comfortable as possible, to ease her pain — emotionally, physically and mentally — so she can be at peace………………………… my saintly mother deserves that much……………………. And every single day, I feel like I’m dancing with the devil and on the next turn, he’s going to break my neck. I do my best, but I can’t do everything. So what do you do? Nothing. You watch. You suffer with them. You cry with them. You watch them yell out…………………………….. you hold their hand, you hug them, and you give them palliative care.

And then you go home and board that imaginary plane to nowhere.

New York Magazine… Mom, I Love You. I Also Wish You Were Dead. And I Expect You Do, Too

A MUST, MUST, MUST read that appeared in New York Magazine by Michael Wolff

On the way to visit my mother one recent rainy afternoon, I stopped in, after quite some constant prodding, to see my insurance salesman. He was pressing his efforts to sell me a long-term-care policy with a pitch about how much I’d save if I bought it now, before the rates were set to precipitously rise. For $5,000 per year, I’d receive, when I needed it, a daily sum to cover my future nursing costs. With an annual inflation adjustment of 5 percent, I could get in my dotage (or the people caring for me would get) as much as $900 a day. My mother carries such a policy, and it pays, in 2012 dollars, $180 a day—a fair idea of where heath-care costs are going.

I am, as my insurance man pointed out, a “sweet spot” candidate. Not only do I have the cash (though not enough to self-finance my decline) but a realistic view: Like so many people in our fifties—in my experience almost everybody—I have a parent in an advanced stage of terminal breakdown.

It’s what my peers talk about: our parents’ horror show. From the outside—at the office, restaurants, cocktail parties—we all seem perfectly secure and substantial. But in a room somewhere, hidden from view, we occupy this other, unimaginable life.

I didn’t need to be schooled in the realities of long-term care: The costs for my mother, who is 86 and who, for the past eighteen months, has not been able to walk, talk, or to address her most minimal needs and, to boot, is absent a short-term memory, come in at about $17,000 a month. And while her LTC insurance hardly covers all of that, I’m certainly grateful she had the foresight to carry such a policy. (Although John Hancock, the carrier, has never paid on time, and all payments involve hours of being on hold with its invariably unhelpful help-line operators—and please fax them, don’t e-mail.) My three children deserve as much.

And yet, on the verge of writing the check (that is, the first LTC check), I backed up.

We make certain assumptions about the necessity of care. It’s an individual and, depending on where you stand in the great health-care debate, a national responsibility. It is what’s demanded of us, this extraordinary effort. For my mother, my siblings and I do what we are supposed to do. My children, I don’t doubt, will do the same.

And yet, I will tell you, what I feel most intensely when I sit by my mother’s bed is a crushing sense of guilt for keeping her alive. Who can accept such suffering—who can so conscientiously facilitate it?

“Why do we want to cure cancer? Why do we want everybody to stop smoking? For this?” wailed a friend of mine with two long-ailing and yet tenacious in-laws.

In 1990, there were slightly more than 3 million Americans over the age of 85. Now there are almost 6 million. By 2050 there will be 19 million—approaching 5 percent of the population. There are various ways to look at this. If you are responsible for governmental budgets, it’s a knotty policy issue. If you are in marketing, it suggests new opportunities (and not just Depends). If you are my age, it seems amazingly optimistic. Age is one of the great modern adventures, a technological marvel—we’re given several more youthful-ish decades if we take care of ourselves. Almost nobody, at least openly, sees this for its ultimate, dismaying, unintended consequence: By promoting longevity and technologically inhibiting death, we have created a new biological status held by an ever-growing part of the nation, a no-exit state that persists longer and longer, one that is nearly as remote from life as death, but which, unlike death, requires vast service, indentured servitude really, and resources.

This is not anomalous; this is the norm.

The traditional exits, of a sudden heart attack, of dying in one’s sleep, of unreasonably dropping dead in the street, of even a terminal illness, are now exotic ways of going. The longer you live the longer it will take to die. The better you have lived the worse you may die. The healthier you are—through careful diet, diligent exercise, and attentive medical scrutiny—the harder it is to die. Part of the advance in life expectancy is that we have technologically inhibited the ultimate event. We have fought natural causes to almost a draw. If you eliminate smokers, drinkers, other substance abusers, the obese, and the fatally ill, you are left with a rapidly growing demographic segment peculiarly resistant to death’s appointment—though far, far, far from healthy.

Sometimes we comb my mother’s hair in silly dos, or photograph her in funny hats—a gallows but helpful humor: Contrary to the comedian’s maxim, comedy is easy, dying hard. Better plan on two years minimum, my insurance agent says, of this stub period of life—and possibly much more.

Mike Wallace, that indefatigable network newsman, died last month in a burst of stories about his accomplishments and character. I focused, though, on a lesser element in the Times’ obituary, that traditional wave-away line: “He had been ill for several years.”

“What does that mean?” I tweeted the young reporter whose byline was on the obit. Someone else responded that it meant Wallace was old. Duh! But then I was pointed to a Washington Post story mentioning dementia. The Times shortly provided an update: Wallace had had bypass surgery four years ago and had been at a facility in Connecticut ever since.

This is not just a drawn-out, stoic, and heroic long good-bye. This is human carnage. Seventy percent of those older than 80 have a chronic disability, according to one study; 53 percent in this group have at least one severe disability; and 36 percent have moderate to severe cognitive impairments; you definitely don’t want to know what’s considered to be a moderate impairment.

From a young and healthy perspective, we tend to look at dementia as merely ­Alzheimer’s—a cancerlike bullet, an unfortunate genetic fate, which, with luck, we’ll avoid. In fact, Alzheimer’s is just one form—not, as it happens, my mother’s—of the ­ever-more-encompassing conditions of cognitive collapse that are the partners and the price of longevity.

There are now more than 5 million demented Americans. By 2050, upward of 15 million of us will have lost our minds.

Speaking of price: This year, the costs of dementia care will be $200 billion. By 2050, $1 trillion.

Make no mistake, the purpose of long-term-care insurance is to help finance some of the greatest misery and suffering human beings have yet devised.

I hesitate to give my mother a personality here. It is the argument I have with myself everyday—she is not who she was; do not force her to endure because of what she once was. Do not sentimentalize. And yet … that’s the bind: She remains my mother.

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Good News? US Senators Seek to Cut Misuse of Antipsychotics

This is a controversial matter……. I don’t even know what to say about it……….. my mother is on antipsychotics that were given to her by a trained psychiatrist to “stabilize” her during her month-long stay at a geriatric psych unit. They do this……….. stabilizing…………… because many facilities (even the “memory care” units) won’t accept behavioral patients unless they are medicated……………… it’s a lose-lose situation, but it’s certainly not uncommon………………. And yes, we all know about “black box” warnings.

So what do you do? For those of us coping with a behavioral parent, our options are limited, and often the only course of action is Seroquel, Lithium, Depakote, Zyprexa, two or more of the above, and the list goes on………………………

Is it a disturbing practice? Yes.

Is there a choice? In our case, no. We had no choice.

Fortunately, Washington, with their first-rate, life-long health care, is on the case……………….

Inside voice…………… I wonder if the esteemed senators below would be willing to take in behavioral dementia patient who has been asked to leave yet another memory care unit or assisted living facility?

So, what do you think about antipsychotics?

U.S. Senators Herb Kohl, D-Wis., Chuck Grassley, R-Iowa, and Richard Blumenthal, D-Conn., today filed an amendment seeking to combat the costly, widespread and inappropriate use of antipsychotics in nursing homes.

“The overuse of antipsychotics is a common and well-recognized problem that puts frail elders at risk and costs taxpayers hundreds of millions of dollars each year,” Kohl said. “We need a new policy that helps to ensure that these drugs are being appropriately used to treat people with mental illnesses, not used to curb behavioral symptoms of Alzheimer’s or other dementias.”

“This amendment responds to alarming reports about the use of antipsychotic drugs with nursing home residents,” Grassley said. “It’s intended to empower these residents and their loved ones in the decisions about the drugs prescribed for them.”

“This measure is responsive to mounting evidence that antipsychotics are being misused and overused in the nursing homes we trust to care for our loved ones,” Blumenthal said. “The amendment will do what is necessary to curb this deeply concerning practice, putting the power to make key health care decisions back into the appropriate hands and eliminating unnecessary costs to taxpayers.”

The amendment to S. 3187, the Food and Drug Administration Safety and Innovation Act would require the Health and Human Services Secretary to issue standardized protocols for obtaining informed consent, or authorization from patients or their designated health care agents or legal representatives, acknowledging possible risks and side effects associated with the antipsychotic, as well as alternative treatment options, before administering the drug for off-label use. While the Food and Drug Administration (FDA) has approved antipsychotic drugs to treat an array of psychiatric conditions, numerous studies conducted during the last decade have concluded that these medications can be harmful when used by frail elders with dementia who do not have a diagnosis of serious mental illness. In fact, the FDA issued two “black box” warnings citing increased risk of death when these drugs are used to treat elderly patients with dementia.

Last year, the Health and Human Services Office of the Inspector General (HHS OIG) issued a report showing that over a six-month period, 305,000, or 14 percent, of the nation’s 2.1 million elderly nursing home residents had at least one Medicare or Medicaid claim for atypical antipsychotics. The HHS OIG also found that 83 percent of Medicare claims for atypical antipsychotic drugs for elderly nursing home residents were associated with off-label conditions and that 88 percent were associated with a condition specified in the FDA box warning. Further, it showed that more than half of the 1.4 million claims for atypical antipsychotic drugs, totaling $116.5 million, failed to comply with Medicare reimbursement criteria. The amendment also calls for a new prescriber education program to promote high-quality, evidence-based treatments, including non-pharmacological interventions. The prescriber education programs would be funded through settlements, penalties and damages recovered in cases related to off-label marketing of prescription drugs.

>>Flickr pic by Ashley Rose

The New York Times and Frontotemporal Dementia … A Must Read

An article, which appeared in The New York Times, about a wife and her husband who has Frontotemporal dementia really hit home with me……. I wish this article came out five or six years ago…… For me, reading this, well, I felt some comfort………… like when they talked about shoplifting …………… knowing that it wasn’t my mom trying to steal the Almond Joy or the Starbucks (that I had already paid for), it was the dementia eating away at her gray matter.

I suppose there’s something to be said about not being totally alone in this ordeal, even if the people who can relate to my story live in Manhattan………. they’re still there.

When Illness Makes a Spouse a Stranger
By 

He threw away tax documents, got a ticket for trying to pass an ambulance and bought stock in companies that were obviously in trouble. Once a good cook, he burned every pot in the house. He became withdrawn and silent, and no longer spoke to his wife over dinner. That same failure to communicate got him fired from his job at a consulting firm.

By 2006, Michael French — a smart, good-natured, hardworking man — had become someone his wife, Ruth, felt she hardly knew. Infuriated, she considered divorce.

But in 2007, she found out what was wrong.

“I cried,” Mrs. French said. “I can’t tell you how much I cried, and how much I apologized to him for every perceived wrong or misunderstanding.”

Mr. French, now 71, has frontotemporal dementia — a little-known, poorly understood and frequently misdiagnosed group of brain diseases that eat away at personality and language. Although it was first recognized more than 100 years ago, there is still no cure or treatment, and patients survive an average of only eight years after the diagnosis.

But recently, researchers have been making important discoveries about the biochemical and genetic defects that cause some forms of the disease. And for the first time, they have identified drugs that may be able to treat one of those defects, the buildup of abnormal proteins in the brain. Tests in people, the first ever such drug trials in this disease, could begin as soon as early next year at the University of California, San Francisco.

“There’s really been an explosion related to the biology,” said Dr. Bruce L. Miller, a professor of neurology andpsychiatry there. “I think at least some subtypes of frontotemporal dementia will be the first neurodegenerative diseases we find a cure for.”

This disease is different from Alzheimer’s, the most common form of dementia. But it is perhaps even more devastating, because it strikes younger people, progresses faster and, unlike Alzheimer’s, does not attack memoryat first but begins with silence, apathy or bizarre personality changes. It is thought to afflict at least 50,000 to 60,000 people in the United States.

The scientific findings in frontotemporal dementia may also reshape thinking about the fundamental flaws involved in Alzheimer’s disease.

“I think the way dementia is going in general now is to realize there are many different subtypes,” Dr. Miller said, adding that what is now labeled Alzheimer’s disease may actually turn out to include hundreds of different illnesses.

Dementia is a formidable adversary, and the history of efforts to treat Alzheimer’s has to temper any excitement about potential medicines for frontotemporal disease. The drugs for Alzheimer’s have been a disappointment, with just temporary effects on symptoms at best.

But even if treatments or cures for frontotemporal dementia do emerge, they will almost certainly come too late for people with advanced cases, like Mr. French or Richard Rainwater, a billionaire investor who learned in 2009 that he had progressive supranuclear palsy, which some consider a form of frontotemporal dementia. Mr. Rainwater and his family have donated more than $20 million to a research consortium, but given that he has a rapidly progressive form, any advances from the consortium may be more likely to help others than to save him.

Looking for Answers

Looking back, Mrs. French, who is 66 and lives in Manhattan, recalled episodes of odd behavior over the years and realized that her husband’s mind had probably begun to slip while he was in his 50s, at least a decade before the disease was diagnosed. He had always changed jobs a lot. At the time she took it as a sign of a stubborn personality, not of illness — and it is still not clear which it was. He always wanted to do things his own way, and that did not sit well with some bosses.

“I thought it was just Michael being Michael,” she said.

A friend described Mr. French as being unable to read the tea leaves, oblivious of corporate politics. At one point Mrs. French even bought him a self-help book. But he never changed.

And he always found another job, better than the one before. But things went downhill in 2006.

“His immediate boss was so frustrated by him that she called up, and we were at the dinner table, and I could hear her screaming,” Mrs. French said.

He was fired, and this time he did not find another job. At 66, he retired.

Soon after, because he had trouble speaking, he consulted a neurologist. When they got the diagnosis, Mrs. French asked the doctor, “How do we treat it?”

“It’s brain atrophy,” he replied.

Her thoughts of divorce evaporated. Instead, she told her husband: “Whatever happens, we will go through this together. I will be there.”

From then on, the silence at the dinner table no longer troubled her. It did not seem personal anymore. He was not refusing to talk; he simply could not. Her anger melted into sadness.

But sometimes she still blew her top. Once, she came home and found him at the stove, seemingly unaware that his oven mitt was smoldering.

“I actually hit him a couple times out of frustration,” she said. What made her lose control, she said, was a toxic mix of frustration and fear — fear of what was happening to him, and fear that she would not know what to do, how to help. No amount of information from his doctors could put her at ease.

“They can tell you everything that’s ever happened to anyone, but they can’t tell you what’s going to happen to you,” she said.

The last five years have been wrenching and often lonely. Michael was the love of her life. When she married him, her sister asked, “How does it feel to hit the jackpot?” In more than 30 years of marriage, she never heard him say an unkind word about anyone. He was an engineer, lectured at conventions, did volunteer work, belonged to a history book club, ran marathons. Now he can no longer speak, read, write or walk.

If there is comfort anywhere for Mrs. French, it is in knowing one thing: she has kept her promise to be there.

The Science

Frontotemporal dementia, also called frontotemporal degeneration or Pick’s disease, refers to a group of diseases that destroy nerve centers in the frontal and temporal lobes — the home of decision-making, emotion, judgment, behavior and language. Some forms of the disease also cause movement disorders.

Most cases occur sporadically, in people with no family history of the illness — like Michael French — but a small percentage are inherited.

Patients generally receive from one to four misdiagnoses, and it may take years to finally get the right answer. Mistaken diagnoses can include Alzheimer’s disease, stroke, midlife crisis or psychiatric illnesses like depression,bipolar disorder, post-traumatic stress or anxiety. Many relatives of patients say doctors dismiss their reports of personality change. But it is real.

“They totally break down in their ability to connect with other people and care about them,” Dr. Miller said.

There are eight subtypes of frontotemporal degeneration, sorted by the symptoms they cause. Some affect behavior. Others, grouped under the heading primary progressive aphasia, affect language. Still others affect movement, leading to disorders that resemble Parkinson’s or Lou Gehrig’s disease (also called amyotrophic lateral sclerosis or A.L.S.).

But patients may match more than one category, and the subtype may change as the disease progresses.

“I see a lot who don’t present like the textbook,” said Dr. Edward Huey, an assistant professor of psychiatry and neurology at Columbia University Medical Center.

In most patients, MRI and other scans reveal shrinkage in the frontal and temporal lobes, sometimes to a shocking degree.

“If I showed you more extreme cases, you could read it from across the room,” Dr. Huey said.

He said researchers were using imaging to find out if specific symptoms could be mapped to atrophy in certain spots.

“The frontal lobes are sort of the last frontier in the brain,” Dr. Huey said, adding that the losses these patients suffer are helping researchers understand more about what the frontal lobes do. As the brain atrophy progresses, Dr. Huey said, patients “have pieces of psychiatric syndromes, but not the whole syndrome.” For instance, they have compulsions, but not the usual accompaniment, obsessions. So they may wash their hands over and over again, but not in a worried or anxious way. Some lose their inhibitions and moral judgment. Shoplifting is not uncommon. Many have the apathy and social disconnection that usually go with depression, but they do not feel depressed.

“They’re not down, but they just don’t enjoy things as much as they used to,” Dr. Huey said. “There appears to be a dysfunction in the reward circuit, where activities that were rewarding and pleasurable no longer seem to be. These patients lose themselves.”

Many seem to go on endless eating binges and gain weight. It is not clear why — whether they are actually hungry or whether the eating is just another compulsion. Some people with the illness shower repeatedly or check the mail 100 times a day. One possible reason, Dr. Huey said, is that “the part of the brain that tells you, ‘No, that task is done,’ is gone.” Some patients collect things — by the hundreds. A few have had bursts of creativity in music or painting, possibly because other brain regions come to the fore as the frontal lobes wither.

A Way of Life Cut Short

Long before her husband became ill, Mrs. French had a successful career in sales and marketing for textile companies and ultimately became a vice president at Liberty of London. But she gave it up in 1991 to do something she loved: teaching English as a second language to adults. She was doing that work when his condition was diagnosed.

One day, in a moment of inspiration, she asked her students if they knew the traditional wedding vows in English. She began to recite them. At “for better, for worse,” she choked up. Struggling to keep her composure, she quickly finished and moved on to another subject.

After teaching, she would walk home through Central Park, and in the early days of his illness Mr. French would often meet her halfway. She would see him heading toward her, smiling and strikingly handsome. “When I look at Michael, that’s what I see, that’s who he will always be to me.”

In 2007, Mrs. French joined a support group for caregivers of people with frontotemporal dementia. Jill Goldman, a genetic counselor at Columbia University Medical Center, said she started the group because patients’ relatives felt that they did not fit in at Alzheimer’s groups; their loved ones were younger and often had bizarre behaviors that were nothing like Alzheimer’s.

“One of the things that goes first is insight,” Ms. Goldman said. “ ‘There’s nothing wrong with me. Why can’t I do what I want to do?’ ”

Members of the group tell of loved ones who hug strangers, who fly into terrifying rages and hit family members and health aides, or who pass their days in silence cutting up newspapers or watching television. Patients are easily taken in by financial scams that can cost families thousands of dollars. Often, apathy sets in, and people once devoted to their families lose interest in everyone, even their own children.

“My son and I look out the window and see my wife out there, stepping on leaves, and we start to cry,” one member said.

Some have struggled with uncertain diagnoses because patients have symptoms of both Alzheimer’s and frontotemporal disease. One wife described trips to multiple doctors and inconclusive reports on PET scans and spinal taps. Should she have taken her husband to the Mayo Clinic? She agonized over the idea that he might have some illness other than frontotemporal dementia or Alzheimer’s, something treatable, and that there might be some way to rescue him, to bring him back.

Another said her husband, a judge who had always been mild-mannered and modest, turned boastful and began talking to strangers in the street, making jokes at the wrong time and falling for scams.

“He salutes every flag, closes every gate, kisses every hand,” she said.

Riding the bus in Manhattan, he will loudly announce, “I haven’t killed anybody lately.” Not infrequently it gets him a seat. He can turn violent and has struck a health aide with his cane.

“He’s just mean and nasty,” his wife said. “He was such a wonderful man. He’s not a person anymore.”

Ms. Goldman provides stacks of business-size cards that spouses can hand out to strangers in awkward situations.

“My husband has a terminal brain disease called frontotemporal dementia,” the cards read. “Thank you for your understanding.”

Many find that friends and family pull away. Nearly all grapple with whether and when to take away car keys, give drugs to blunt aggression, hire a health aide or put the patient in a nursing home. One group member said, “The doctor told me, ‘You’re taking good care of him, he’ll live a long time,’ and I said, ‘Why is that a good thing?’ ”

Patients are hard to care for at home, and those who are young, strong and aggressive are sometimes kicked out of nursing homes because they are seen as posing a physical threat. But employers do not necessarily sympathize with relatives called out of work in the middle of the day because a patient has punched or shoved someone at the nursing home.

“My boss says, ‘You just have to deal with this better,’ ” one group member said.

Another group member, a professor of psychotherapy and mental health counseling, said she quit her job at the height of her career to take care of her partner and after a few years became suicidal.

“Being a caregiver in this disease is a grieving process,” she said, “while the person is still alive.”

Easing the Burden

Ruth and Michael French managed on their own until May 2009, when he fell down a flight of stairs in their apartment building while she was at work. He fractured his skull and came home in a wheelchair, so weak and frail that she hired an aide to help take care of him.

Mrs. French is fine-boned and thin, and as her husband grew weaker, the physical demands on her became daunting. Streets she had thought flat revealed themselves to be hills once she found herself trying to push a 140-pound man in a wheelchair. Potholes yawned like chasms. One night at home, after helping him clean his teeth, she turned to put the toothbrush away, and in that moment he fell into the bathtub. She was barely able to pull him up.

“I said, ‘Michael, now we’re at the point where we’re both at risk,’ ” she recalled.

She injured her wrist, developed a stomach ulcer and lost so much weight that people worried about her. Mr. French became incontinent, and she would sometimes wake up in a pool of his urine. The health aide hurt her back lifting him.

“I heard myself say one day, ‘I would never want anybody to do for me what I’m doing for Michael,’ ” Mrs. French said.

She had hoped to keep him at home until the end but knew it might not be possible. “This thing is going to kill both of us, and I don’t know who’s going first,” she told him.

In one way, she had an easier time than many other caregivers. Her husband never turned hostile. He retained a sweetness, and an acceptance of his illness that she found inspiring.

At one point, worried about finances, she considered laying off the aide and taking care of Michael alone. When members of her support group worried that the stress would kill her, she told them, “That might not be so bad.”

At Ms. Goldman’s urging, she saw a psychotherapist. He recommended medications to calm her. She filled the prescription but threw the pills away.

“I kind of feel that having gone through the anxiety and the worry is what let me get to the other side,” Mrs. French said.

While Mr. French was still well enough, they had discussed the possibility of a nursing home. So when the time came, it was not really a surprise.

“He knew it was something I didn’t want to do, because every time we spoke about it I would cry,” Mrs. French said. “When I told him that I had made arrangements, he said — and this is a man who can’t speak, so he had to muster every bit of energy he could — he said, ‘You did the best you could.’ ”

In April last year, Mrs. French placed her husband in a nursing home in Manhattan. Along with her sadness came feelings of relief and freedom. Soon after he was settled, she went out to dinner with friends for the first time in two years.

“At times, I ache for him to be back in the apartment,” she said. “But I ache for him to be back as him.”

She said that long after he ceased speaking, he continues to understand what she says.

“I remember asking his neurologist, ‘Will he know me?’ ” Mrs. French said. “And he said, ‘Oh, he’ll always know you. He might not be able to express it in a way that will be familiar to you or that you’ll like, but he’ll always know you.’ ”

She wondered what longings might drive her husband’s dreams:

“I asked him, ‘Do you talk in your dreams?’ and he said, ‘Yes.’ And I asked him, ‘Do you dream about me?’ And he said, ‘Yes.’ ”

She has had time to think about mortality, his and her own.

“Death to me has always been a wake-up call to live,” she said. “This is the endgame. Sometimes I get upset because I don’t think I have enough money, and sometimes I get upset because I think I do. You don’t necessarily want to live too long, but neither do you want to die.”

On most days, she spends several hours at the nursing home with her husband. She shaves him and sometimes climbs into bed with him to hold him and to nap together.

“Where do you carry my heart?” she asks him, referring to a poem they love by E. E. Cummings.

He smiles and pats his chest.

i carry your heart with me(i carry it in

my heart)i am never without it(anywhere

i go you go,my dear;and whatever is done

by only me is your doing,my darling)

i fear no fate(for you are my fate,my sweet)i want

no world(for beautiful you are my world,my true)

Excerpt reprinted from “Complete Poems: 1904-1962” by E. E. Cummings, ed. George J. Firmage. With the permission of the Liveright Publishing Corporation.