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

This is a documentary film in production. Produced, Directed and Written by Michael Rossato-Bennett. Director of Photography – Shachar Langlev 
This is an amazing story about music’s ability to awaken ‘lost’ minds. It will be on PBS within one year.

Another Mother’s Day rolls on by….

Mother’s Day is an awkward holiday. I say awkward because while I understand why we make such a fuss about this day, I can’t help but find it to be somewhat, well, insensitive — to put it bluntly, Mother’s Day is another reminder of what I, and others like me, don’t have. My mother is alive, however, she is far from well. My mother is slowly dying from Frontotemporal dementia. FTD, or Pick’s disease as it’s sometimes called, affects the frontal and temporal lobes of the brain, or the area of the brain that makes us who we are. Call it your personality center. Like Alzheimer’s disease, FTD can cause memory loss, but it can also cause dramatic personality changes, including apathy; many lose their ability to communicate, and because the disease gnaws away at the gray matter that controls behavior, many with FTD act out; they may yell, become socially inappropriate, impulsive, aggressive and completely incapable of understanding that their actions have consequences. Adding to an already challenging and misunderstood situation, some individuals, like my mother earlier on, don’t even realize that something is terribly wrong.

The result for many of us with a “behavioral” parent is that we live with the stress, the stares, the comments, or worse, we live in fear of being asked to leave yet another assisted living facility.

Dementia is not a quiet disease.

Alzheimer’s disease is the number one type of dementia, accounting for about 50-to-80 percent of dementia cases. Unfortunately, more needs to be done in terms of educating the general public about this and other, lesser-known dementias like FTD. Alzheimer’s disease is the sixth leading cause of death in the U.S., and unlike diseases that were once considered a death sentence, i.e.: heart disease, breast cancer, prostate cancer, HIV/AIDS, and stroke, dementia can’t be cured, prevented or even slowed. This is not a manageable disease, and much more needs to be done in terms of funding and research. Today, more than five million Americans have Alzheimer’s disease and that number is expected to hit 16 million by 2050. To put that into perspective, according to the 2011 U.S. Census 3,880,244 people live in Maricopa County alone, and 6,482,505 live in the state of Arizona.

This disease is also expensive, and family members are often the ones who do the heavy lifting — emotionally, physically and financially. Just last year, some 15 million family and friends provided over 17 billion hours of unpaid caregiving. If you put a price tag on their time, it would amount to around $210.5 billion.

This is the calm before the Tsunami.

I always say, we have no survivors. My mother can’t tell you her story. She can’t even tell you if she is in pain. It’s difficult to talk about who my mother was because she’s not dead — to talk about her in the past tense, to say “she was” sounds so cruel; and yet, sometimes the only way to describe the woman who raised me is in the past tense. My mother was a sweet, gentle soul who devoted herself to her family, to her friends, even to complete strangers. Everyone who knew my mother loved her. She was the heart of our little family. Though the disease has robbed her of so much, her core — that gentle soul — remains intact. Today, when someone approaches her, she just wants to hold their hand or give them a kiss.

Like a child, she seeks love and affection.

As each year rolls into the next — I started noticing something was wrong in 2004… I was 27 — my memories of who she was before FTD fade. I suppose that’s time doing what it does best. And then Mother’s Day comes around. For me, it’s a tragic, in-your-face reminder of what I long for most. Seeing daughters having brunch with their mothers, laughing and talking… I tend to turn away. It’s just easier that way.

My mother doesn’t know my name, she doesn’t even know who she is. Thankfully, she does recognize me. Every time she sees me, she smiles and showers me with kisses. She tucks my hair behind my ear. She takes my hand and, in her own way, tells me about her day as we walk. Even though my mother’s language ability has been reduced to no more than a few words, I understand her. She is my mother, after all.

Yes, I would love to enjoy the kind of relationship that develops between adult daughters and their mothers — that special friendship which occurs later in life. But that’s not my reality. It never will be. This is my reality and I’ll take what I can get because we’re on borrowed time. One day, she won’t recognize me. She’ll just stare.

Hopefully, though, she’ll still take my hand and walk with me.

To learn more about Alzheimer’s disease and other related dementias or to make a donation visit www.alz.or/dsw.

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 DENISE GRADY

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.

Photo courtesy of Suzette Armijo

I’ve known Suzette Armijo  for over a year now…. we met through the Alzheimer’s Association and YAAA! or Young Adults for Alzheimer’s Awareness…. Suzette is the primary caregiver for her grandmother who has Alzheimer’s. She’s also the mother of a sweet little boy and she works full-time…. this girl has her hands full, but she never flinches and she always makes time for others who need her help (like me when my mom was asked to leave our first home). Suzette is ferociously dedicated to this cause……. she wants to end Alzheimer’s disease and other types of dementia; and recently, she spent a few days in Washington DC talking to members of the House and Senate about Alzheimer’s-related legislation.

This girl is a machine!

Suzette was recently interviewed by ABC News about her story……… You know, being a full-time everything: young adult caregiver, parent, employee, volunteer, friend, sister…………………………

Please support Suzette and her tremendous efforts by reposting this ABC News story on your blog, Facebook or Twitter.

By Jane E. Allen

At 30, Suzette Armijo cares for her widowed 86-year-old grandmother, a retired National Park Service ranger in the final stages of Alzheimer’s disease, while holding down a fulltime job, a part-time job and raising a 4-year-old son.

“This was nothing that I had planned for,” says Armijo, who moved her grandmother Elizabeth Armijo into a nearby six-bed assisted living home because veterans’ benefits “wouldn’t pay for her to live with me.” Still, she says, “I have to do everything for her, aside from her bathing. There’s always something new going on with her medically.”

Besides her fulltime marketing job with a Phoenix retirement community, Armijo supplements her income with outside consulting because “I do have to pay a portion of Grandma’s bills.”

Although she doesn’t know anyone else her age doing what she’s doing, she comes to her caregiving out of love for a woman who took care of so many others: “I don’t feel torn because I know this is the way my Grandma was,” Armijo said Thursday. “She took care of her parents. She took care of my grandfather. She took care of my little brother who had cancer when he was little. I grew up seeing that.”

Suzette Armijo is among a generation of young adult caregivers, the majority of whom are women, navigating tough turf without a roadmap. Few of their contemporaries shoulder equivalent responsibilities. Members of the so-called sandwich generation, squeezed by parental caregiving and child-rearing, are a good 20 to 30 years older. As they try to tap into resources to help an ailing grandmother, Mom or Dad, these 20-somethings and 30-somethings are often on a lonely road. Armijo said she’s drawn some of her strength from establishing a local young advocates group through the Alzheimer’s Association. “You have to find something for yourself, otherwise you lose your mind.”

………………………….Can make for a pretty complicated relationship.

Actually, I just saw the comedy Friends With Benefits last night and wanted to share because the movie touches on Alzheimer’s disease…………. Now, most times, I take issue with how news, movies and TV shows portray dementia……………… they typically avoid the grotesque, that is, the disease is wrapped up in a nice pretty bow at the end of the program…… like it’s actually a problem that can be solved.

For me, that’s just plain irritating.

In Friends With Benefits, Justin Timberlake’s father, played by Richard Jenkins, has Alzheimer’s disease and he actually has a challenging behavior: he takes off his pants in public. Part of the storyline (besides the obvious, beneficial, one) involves Dylan (JT) coming to terms with his dad’s diagnosis and behavior……………. Yes, the father has more lucid moments than not, and in those lucid moments, he’s incredibly wise, kind-hearted and ultimately helps his son make the right choice when it comes to love; however, what I liked was that the film (albeit briefly) addressed the toll on young adult children………… Dylan lives in New York, his father lives with his daughter in Los Angeles — there’s an inner conflict; Dylan’s feelings of embarrassment, especially when out in public; Dylan’s heartache at losing another parent (his mother left the family 10 years earlier); Dylan accepting and coming to terms with that which he cannot fix………….. he finally steps into his father’s world and walks around in his shoes.

The movie is out on Netflix and on DVD… it’s a fun flick and it made me laugh, so check it out if you can.

Just Breathe by Meredith Farmer

I got the call while I was on assignment in Tucson with a colleague. “I need to talk to you about your mom. She’s not fitting in.”

Of course she’s not.

She has Frontotemporal dementia.

She yells.

You knew this.

You accepted her knowing she would yell.

I hate you.

I returned to our table. We were having lunch. My face got tight. My mood had changed.

Still, I think I recovered pretty quickly.

Afterall, I had been to this rodeo before.

After mom’s stint in the psych unit, she was accepted into a dementia unit some 20-plus miles from me. I hated the distance, but it was the only nursing home that would take her. Medicare hates it when you spend too much time in a psych unit. The stay is costly. And, as a result, the psych unit, tries to churn you out of there ASAP.

This means experimenting on you with drugs quickly. Zoloft one day. Lithium the next. They find a cocktail of drugs to “stabilize” you and then off you go into the big, bad world.

The social worker at the facility spent some three weeks e-mailing and calling and faxing packets of information about my mom to various facilities around town. Not one would even entertain the idea of personally assessing my mother………….. The yelling. It was a serious issue. It disrupts other residents and can agitate them. Once they read that in the report, it was GAME OVER.

The social worker assured me we would find something. If not, my mom would stay at the psych unit……………. the idea caused me to lose sleep, but after a while, the notion was comforting.

Believe it or not, you adjust to lousy situations very fast. Plus, she was acclimating to her surroundings……………..

I hated the idea of moving her again, and after everything she had been through just to get admitted into the unit — 10 hours sitting in the Emergency Room, sticking something into her urethra just to get a urine sample — I just wanted her to have some peace and quiet. I wanted some peace and quiet………….. Plus, I was getting to know the staff, calling them by their first names…………..They knew me too: The daughter.

Margarita’s daughter.

One happy family.

During one of my visits, the social worker walked up to me with a huge smile and said, XYZ nursing home is going to take her. The director of admissions came out, met my mom, didn’t seem overly concerned about the yelling and said yes. I had never heard of the place. I started to panic. I knew ALL of the best facilities in town………… or at least the ones that earned 3-5 Medicare stars.

This place wasn’t on my list.

I researched the place and was not happy with the number of stars earned. My friend who works in the elder care industry had heard mediocre things……………… Unfortunately, I had no choice.

Do I keep her in a lock down facility where she could never go outside and possibly get even worse or place her at a state-approved nursing home.

It was the only home that would take her. I had to place her. I couldn’t take her home. My mom is a full-time job requiring 24/7 care.

Funny thing about this disease, or at least my mom’s disease, you have to learn to let go. You have to learn that you will never get the very best…………….. Especially because money is involved and wait-lists to the places that might actually help my mom are long.

While the rest of the world is picking a fight over birth control; I am fighting for a bed for my dying mom.

While the rest of the world tries to get rid of any kind of social safety net like Medicare; I worry that one day we might lose the aid we receive; then who will take care of my mom? Sure, I could quit my job, but then who will take care of me financially and my mom? Allow me to reiterate: My mom is a full-time job.

While the rest of the world is fighting about when life actually begins; we let the living elderly rot.

What is wrong with our world?

I see the world as one giant, mostly empty glass. I don’t care for optimists because optimists have not suffered. They have not witnessed suffering. They have not walked a mile in the shoes of someone who is suffering.

I am a realist-slash-pessimist. I am aware that I have my limitations. I can only do so much to help my mother now. I also don’t get my hopes up that things will work out…………………. like when she gets kicked out of a nursing home.

Things don’t always work out.

Then again, sometimes they do………………… but I refuse to get excited about it, because something always interrupts the small victories.

We found a bed for my mom. A good bed. She will be transfered to a unit that has a great reputation for dealing with behaviors.

Every resident at this unit has been kicked out of a previous home (or two). My mom will be in excellent company.

Unfortunately, as the new administrator told me, you have to fail to get to here…………….

True story.

]]> http://mydementedmom.com/2012/04/08/she-yells-too-much-or-finding-another-home/feed/ 1 Kathy Ritchie 343623215_008a03ff09_b http://mydementedmom.com/2012/03/27/alzheimers-documentary-sheds-light-on-disease-or-youre-looking-at-me-like-i-live-here-and-i-dont/ http://mydementedmom.com/2012/03/27/alzheimers-documentary-sheds-light-on-disease-or-youre-looking-at-me-like-i-live-here-and-i-dont/#comments Tue, 27 Mar 2012 00:42:09 +0000 Kathy Ritchie http://mydementedmom.com/?p=1096 Continue reading →]]>

Lee applying lipstick
Photo by: Phillip Maisel

Media often plays it soft when it comes to the portrayal of Alzhemier’s disease on TV shows, in the news or in movies………..… that is, they skirt around the complexities surrounding the disease, the emotions, the financial implications, the long-term toll…………. Sure, some works are more adept than others at portraying the effects of dementia………. The short film, My Name is Lisa, hit on some of the more brutal realities of the disease, specifically, the toll on children…………..… Others, well……………….. The TV show Raising Hope superficially touches on it — sort of — with its character Maw-Maw………. of course, her senility is used to get laughs. The movie The Savages annoyed me more than anything else………”irreverent, hilarious”……….. not so much. Away From Her was a beautiful film, but, for me, it was too easy — the character with Alzheimer’s chose to move into a nursing home and her adjustment was, for the most part, seamless. The movie actually left me feeling worse about my own situation………. Why can’t my mother be like her? Am I doing something wrong? God, I wish my mom were like her…….

The truth is, dementia is a hard story to tell. It isn’t a sexy story. There are no survivors, so no happy endings. Alzheimer’s disease and other dementias are incredibly grotesque…….. twisted……. disturbing………. and until we start having an honest, more mainstream conversation about dementia, it will continue to be the disease that gets swept under the rug…………… Let’s face it, no one really wants to talk about “that.”

Until now. Documentary filmmaker Scott Kirschenbaum does talk about “that” in his film, You’re Looking At Me Like I Live Here And I Don’t premiering on PBS’s Independent Lens Thursday, March 29 at 10-pm (check local listings).

That title pretty much sums up this beautifully poignant yet jarring documentary about a woman named Lee Gorewitz who lives at the Traditions Alzheimer’s & Other Dementia Care Unit at the Reutlinger Community for Jewish Living in California.

Kirschenbaum doesn’t do much talking. He doesn’t hold your hand throughout the film. He doesn’t make you feel at ease.

In fact, when the film opens, you can’t help but feel disoriented, even confused because you’re given no sense of direction, but then, that is his point…………….. and then you meet Lee.

Charismatic, delightful, even poetic, Lee takes your hand and guides you into her  world…………. a world of disconnected, fleeting memories………….. a world she’s trying to piece together and navigate in her own way. Lee has Alzheimer’s disease and this is her story…………. a first-person account. We don’t hear from her family, her friends or her doctors — Kirschenbaum did that on purpose. “It needed to be wholly about Lee’s present-day existence within the walls of the Unit.” Watching Lee tell her story is humorous, exhausting and heartbreaking all at once…………… to watch this woman quizzically stare at family photographs, to read a card addressed to “Mom” and not realize she IS mom, to watch her dance and smile, only to later tell another resident that she’s going to die……………..

Kirschenbaum refuses to sugar coat the disease.

We see Lee as she is…………… Kirschenbaum sums it up best: “In the span of minutes, Lee would morph from pensive thinker to gregarious helper, from bubbly mover-and-shaker to morose and sometimes cruel instigator.” His decision as a filmmaker to leave the grotesque intact is brave. As an outsider, it’s often difficult to understand what the individual goes through — as well as their family — until you have witnessed these unsettling scenes unfold.

Lee is a remarkable woman……………. you can’t help but fall in love with her………… you can’t help but want to reach out and comfort her, laugh with her, cry with her……. And despite everything, she’s resilient…………. or maybe she knows she doesn’t have a choice…………… this is her life and she must keep going……………. even as the walls are closing in on her.

“Widowed, cloistered, and slowly undone by her inability to think or speak clearly, Lee has every reason to succumb to the expectations of her conditions. Instead, she defies despondency. When she breaks down, she rebuilds. When she loses words, she summons emotions. And, despite the small defeats of her efforts, she remains an exceptional and resilient soul.”

I talked to Kirschenbaum about his remarkable film below:

There’s no narration. Why did you decide to let Lee tell the story?The goal from the onset was to place the viewer in Lee’s world — in this time of her life — and not rely on her past or someone who lives outside the Alzheimer’s Unit to tell Lee’s story. I wanted to let Lee communicate to the audience. I think, in essence, there is a narrative but it’s not a conventional Hollywood narrative. This is the fragmented reality of Alzheimer’s. There was a method and strategy as to how the scenes were oriented, one after another — as an Alzheimer’s odyssey.

You show the grotesque in your film, which is unusual… why did you decide to go there in your film?
For me, I know if I’m going to explore an Alzheimer’s unit in earnest, the entire continuum of emotions needs to be evidenced in the final film. Just as integral to showing Lee telling a joke in front of a caregiver was showing the most painful images that occur in Alzheimer’s unit. I want the audience to see that there’s a great deal of humanity and to be fair to what actually occurs in that environment, so audiences can be clear on what this world is, so they can hopefully connect with this world on a human-to-human level.

Has this film changed your view on aging?
As a filmmaker, I’m trying to explore difficult and challenging environments. I feel more connected with life and living by making films more than any other work. There was a sense of urgency in making this movie … I know about the emotion and the psychological impact its had on me. I feel a sense of gratitude that I was allowed to make this movie, to befriend Lee and the other residents, and was allowed access to this beautiful and depressing world. I want to be someone who has the capacity to hold space in my life for these kinds of relationships.

You said you wanted to target younger people with this film… Why?
The entire film crew were in their 20s and 30s, so as a young group we wanted to go there… I know some of the most impassioned advocates for Alzheimer’s awareness are young people and I wanted this to be a film that they can rally around and be excited about. In my dream scenario, this movie is for all age groups. This is a reality. Alzheimer’s is not going away. It’s worth everyone’s time to experience this… to get comfortable going to an Alzheimer’s unit or nursing home and trying to connect … We should not ignore our elders no matter how debilitated they are or difficult their situation is.

You’re Looking At Me Like I Live Here And I Don’t will air on PBS’s Independent Lens this Thursday, March 29 at 10-pm (check local listings).

http://www.kickstarter.com/projects/thinkfilm/howards-brain?ref=recently_launched

The skinny on Howard, his brain and the film:

Who’s Howard?

Howard Glick is a 53-year-old man currently living alone in New York City. Howard’s funny, outgoing, talkative and has had an interesting life.

If you saw him on the street, you might not notice him. But there is one thing that makes him different from most of us: Howard has a rare brain disease called Frontotemporal Degeneration, or FTD.

A disease that steals your soul

Never heard of FTD? Join the crowd. FTD is a form of dementia, but instead of attacking memory like Alzheimer’s, it affects the frontal lobes of the brain, the part that controls your behavior and emotions; your personality. Take away your frontal lobes, the “social brain” and the you that is “you” ceases to exist.

FTD typically starts younger and affects people in the “prime of their lives”. No matter what age you are diagnosed, FTD is irreversible, untreatable, and incurable.

It is What it is 

In 2010, I made a short film about four families struggling with this terrible disease. The film It is What It is was told from the perspective of a husband or wife caring for their spouse with FTD. Each of their stories was sad and heartbreaking but also some of the most powerful testaments to love that I have ever witnessed.

Still there was something missing. One of the effects of FTD is that it mutes the self-awareness of those afflicted with it. They lose the ability to make sense of and express what is happening to them. All too often, their voices are silent.

And then I met Howard.

Howard Glick, FTD

Howard is different: he knows he has FTD and he can describe what it’s like to live with the disease – from the inside. Howard is far from silent.

So last September, I gave him a video camera and asked him to record himself. Howard is funny, candid, introspective and articulate. You can get a sense of him and what he’s been through by watching the video above.

Like so many others with FTD, Howard was mis-diagnosed and suffered through six-and-a-half years of what he calls “absolute hell.” Once a successful businessman, Howard describes his current financial situation as “retro-economical.” He lives in a rent-controlled apartment in Washington Heights and gets by with a little help from his friends, a check from Social Security, and 63 cents a day in food stamps.

But Howard is a remarkable fighter. While he struggles to keep his own symptoms in check, he also started a blog and a FaceBook group to help others with FTD. He has online followers from around the world. He writes candidly about his own life and he speaks with a special wisdom of those benighted by FTD.

Howard’s Brain

The challenge facing Howard now — and for telling his story — is that it’s going to take a while to write the ending. There is little that is typical about the progression of FTD so Howard lives in uncharted territory.

So we’ve set our sights on the horizon. We have about 100 hours of footage so far and Howard continues to film his daily life. My plan is to send a small crew to shoot what Howard cannot and to interview those closest to him. All the funds raised through this Kickstarter project will be used to pay for that shooting and to begin editing.

Howard’s Brain is the first-person account of one man’s reach for a life that is slowly extending beyond his grasp. I believe this film is a unique opportunity to raise the voice of FTD. Through Howard’s story we hope to spread awareness about FTD and support the goal of ultimately finding a cure. We hope you’ll want to help us with that mission. Thanks for your support.

Maybe she just didn’t want to go there……………………..

Unfortunately, a lot of people who develop frontotemporal dementia (or Pick’s disease) don’t even realize they have it. It is literally a thief in the night……………. that takes everything. The idea that something could ravage your grey matter without you even knowing is beyond frightening……………. Imagine, all of a sudden, the people around you — your own family — change. They treat you differently, begin to control everything around you, tell you that you can no longer perform tasks you once performed with ease, take away the keys………………. it’s the kind of plot line that only Hollywood could concoct……………. it’s not you; it’s them………………

My mother seemed oblivious that anything was wrong. Of course, when life had to change because of her disease, she would become incredulous, not understanding that we were trying to keep her (and everyone else) safe. Taking away the car keys was a total trauma………………. she could not understand why we would take away the keys. In her mind, she was a perfectly safe driver. And then she tried to buy a car for $1………….. That was, according to my mom, the deal she had negotiated for herself………………

$1.

That thought, that in my mind, I’m OK, but everyone else is clearly against me seems wholly unfathomable, a total nightmare………………. I’d like to think that I’m (mostly) logical about things, but to think that I may not be able to distinguish reality from dementia is beyond horrifying………. There are no words.

I’ve contemplated the idea of calling it a day should I ever face such a diagnosis…………….. After all, I’ve been in the belly of the beast and it’s not how I want to go out……………. dementia can be a gruesome disease; it’s frightening, tragic, you’re always in the dark trying to feel your way around, struggling for the familiar, grasping at something that’s really nothing…………….

The Catholic in me would never go through with it for fear of burning in Hell or coming back in my next life as a roach (that’s the yogini in me)……………….. still, the thought dances around my mind from time to time………………… and then I realized, what if I don’t even realize its wrapped its tentacles around my grey matter?

Scary stuff……………… scarier still is knowing that dementia is not in the news, it’s not part of the daily conversation, no one seems concerned that this disease is going to overwhelm our economy……….. NEWS FLASH: This is a costly disease……..long-term care can cost thousands and thousands of dollars per month..…….. Even more disturbing (or annoying), most people don’t even know that there are other forms of dementia besides Alzheimer’s disease………… and then there’s matter of diagnosing it. Correctly.

I have no idea how I would react to any kind of diagnosis like dementia……. if I’m even able to comprehend what the doctor says…………….. I remember my mom sitting there starring, even smiling at times, as the doctor said “Alzheimer’s” repeatedly…………………….

……………..she had no idea what the fates had in store for her.

>>Flickr pic by Meredith Farmer