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.

………………………….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).

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

The running joke about me is that I see the glass as half empty………… The reason I choose to view most every situation from this angle is to avoid disappointment. It’s a method that’s served me well………….. especially when it comes to my family.

Of course, I would never describe myself as a pessimist. That’s just tragic.

I’m more of a realistic. Because the reality is…………………………

My mom is currently being “stabilized” with psychotropic drugs. After we were told that she had to leave her home, I begged my dream nursing home to consider accepting her…. they had a reputation for taking tough cases………if you’ve read this blog, you know my mother is challenging………………. dream nursing home decided to send out a nurse to further their evaluation. I was feeling optimistic. I thought, maybe this is an early birthday present……………………. Not five minutes after meeting my mother, the nurse told me that she needed to be in a lock down facility where she could be stabilized……… and they only way to get her to said facility would be to call 911.

Ten hours after 911 pulled up and carted my mom away, we found a bed at a unit that works to “stabilize” people like my mom.  That’s the thing with difficult dementia patients……….. most nursing homes won’t accept them if they are yellers (it disrupts other residents), combative (apparently, not an attractive quality) or aggressive (no one appreciates a black eye). My mother is a yeller. And she is quote-unquote combative. Not my word……………. and sorry, if a stranger were wiping your ass, I think you’d behave “combatively,” ………… as for the aggression part, well, it wasn’t her. Unfortunately, yelling has unintended consequences……………… like pissing off other dementia patients — a resident at the last home wanted to punch her to shut her up………… sigh.

Now here we are, waiting for her to “stabilize.”

And then we look for a permanent facility.

The more challenging dementia cases, usually end up at places that can deal with behaviors…………….. Unfortunately, there are very few “behavioral” facilities, and the ones that have a good reputation also have no beds. We are currently on a waiting list for one……………………

Think about that for a moment. My mom is on a waiting list for a bed at a facility that has limited space………… So, in order for a bed to open up, one of three things has to happen:

1. Someone has to be cured of dementia.

2. Someone has to be transfered to another facility.

3. Someone has to die.

We are waiting for someone to die. Preferably a female.

Glass nearly empty.

That’s our reality.

Dementia is a grotesque disease. And when you peel back every grotesque layer, what’s left is a putrid, rotten pit……………. or, reality.

The reality is, I have very few choices.

The reality is, there is very little-to-nothing I can do.

The reality is, I cannot save my mom.

The reality is, I have done everything I can do.

The reality is, I have to let her go.

The reality is, I have lost.

The reality is, I am accepting all of the above.**

** Somedays, reality is a tougher pill to swallow than others.

Nothing has ever been easy about this disease, her disease………………. the price we’ve paid as a family, well, there’s no coming back from it. In many ways, I’ve lost both parents………….. one to the disease; the other to her disease. Her disease has made us more grotesque…………………. her demise is a staggering loss, heartbreaking, devastating. When I sit back and think about what the disease has done, where it has taken us, how its nefarious tentacles has slowly suffocated us……………….it’s still suffocating us……………. it’s a curious thing how something can infiltrate and devastate the family unit to the point where there is no point, no coming back.

No happy ending.

Grieving for the living is a strange thing……………… Closure comes in the form of accepting what is…………….. I think.

I don’t really know.

>>Flickr pic by Meredith Farmer

Photo by Meredith Farmer

I had so many noble ideas for this week’s post….. I was feeling good. I started thinking about how this — life — was some sort of test, a means of proving one’s ability to persevere and not succumb to the easy-outs; because by staying the course, we’ll somehow achieve spiritual bonus points. I was arrogant, I suppose…….. I thought I’d done so well, not losing it that is……………..I mean, I know people who were tumbling into a deep pit of depression and they had nothing significant going on their life — other than too much time to think………………….. I was proud of myself. I thought we were going to be OK for at least the rest of the month until tonight, when I was informed that my mother had 30 days to pack her stuff and leave the home.

Mom yells. She spits. She does have a bit of a poopy reputation.

Other residents have been complaining. Complaining to their families. I suppose it boils down to money — why risk losing one or two relatively easy residents versus my mother? She has never been easy to deal with. Her disease is especially trying……….. I would probably do the same. Nursing home care is a business. A big business that’s only going to boom over time. I got word at 5:00 p.m. I started calling facilities as soon as I hung up the phone. Unfortunately, I am limited in terms of where I can place her. Her behaviors, the result of frontotemporal dementia, mean I can’t place her just anywhere………… I need to find a behavioral unit. And those are few and far between here…………… but she’s not violent, so I risk placing her in a home where she could be the victim. My mom’s behaviors are of the benign variety……………. she yells, she spits, she gets into her poop from time to time……………… but they are behaviors and it seems things are pretty black and white when it comes to nursing homes………………………… people do not want to deal with behaviors.

So here I am. I have no idea how my father is going to take this. I dread the conversation; I just don’t know. But there’s no one else………………………..

I saw a shaman once who told me that the source of my mother’s disease (and my own) could be the result of an agreement we made in another life (I know, what was I thinking? Why would I agree to such a dumb pact?)……………. I can’t help but think about that…………. did I do something horribly wrong. Is this my punishment………….. in this lifetime? Or was I perhaps some saint who agreed to participate in this life with my mother, who, clearly, was also a saint in order to voluntarily go through this.

Or, is this the act of God; a vengeful God……………. one who is enjoying this…………… watching his puppets suffer.

(I don’t believe in a loving God. That makes no sense once you step back and ponder all the suffering going on in the world).

Or maybe this is Hell. People experiencing varying degrees of Hell, but Hell……..

Whatever this is, I am less fearful of death………………. Sometimes, I think, well, at least all of this will be over with and death is probably less stressful…………….. It’s terribly tragic way to think. I know that.

Last week, I was accused of wanting to sedate my mother by a psych nurse practitioner’s partner. My mother was grinding her teeth so badly, you could hear it if you were standing 3 feet away from her. It pained me. It kept me up at night. I asked the nurse practitioner if she could do something; increase her medication; something; anything……………. she dropped my mother, said I should find someone who shares my “philosophy” of caregiving and then that response by her colleague. Talk about knife in gut…………. I took mom back to Banner Alzheimer’s Institute that same week……………….. they looked at what the nurse practitioner was giving her……………………….. it was wrong; they added and increased her meds.

They also removed the Robitusin PM that was being given for her cough (cough? what cough? I called the home…. oh, she has a cough once in a while…. it’s as needed.). 

Yeah. A cough.

Then, one week later, we get the boot. I don’t know how much more I can take…………. I can’t even imagine what “normal” feels like. The glass is always half empty — there’s not point in being optimistic about things because they simply do not work out when it comes to this disease……………………

I always wanted children, I used to day dream about being a mom, I had baby names picked out, I thought about outfits and how I would dress my kids………………..and now I can’t even see that as a possibility……………… it’s just slipping away. I just can’t fathom doing all of this and raising a baby. I have my hands full with two parents, a job, a relationship, friendships (I feel like I suck at all of the above most days)………………

And I’m afraid that God will continue to punish me. I truly believe that he will give me a child that has some terrible disease…………….. and you can’t give them back once they’re out. Thing is, I don’t think I can continue to fight for another person. I can’t do it. I can’t care for a sick person……………not for the rest of their life. I don’t know how people caregive a child into adulthood…………… Still, it breaks my heart every time I see a baby picture, a big belly, an ultrasound or anything of the sort…………………. it reminds me of what I don’t think I’ll ever have.

I will be 35 in three weeks………………. and this is my life.

I’m tired.

>>Flickr pic by Meredith Farmer

Photo by OlestC

Dear Demi Moore (and every other well-to-do celebrity suffering from “exhaustion”),

I wanted to write you this note to express my sadness at your current condition. I’ve always enjoyed your work (even the stuff that was panned, because it was you) and admired your strength — you came from nothing and created a wondrous life for yourself. It was, and still is, very rare to see an actor make it on their own, without parental connections, etc. Not only that, but by your own admission, your relationship with your mother was terribly strained, yet you persevered and you were with her when she passed away — absolutely, positively admirable.

You earned your star.

All that said, I wanted to tell you — and many of your colleagues in showbiz — how unimpressed I am with you inability to cope with life’s hardships. I can’t help but roll my eyes at your latest cry for help……… I am not going to pretend to know what is going on in your orbit (a cheating spouse? whip-its? really?), but from my own brief fling in the world of tabloid (ahem) “journalism,” sources are usually publicists, people who are somehow connected to you.

Ms. Moore, heartbreak is terrible and any kind of betrayal is absolutely devastating — no, crushing. But I implore you to take a moment to stop………………… to step outside of your gilded cage and step into my iron cage or anyone else who is struggling to keep their own emotional head above water. Life is hard. Life is suffering, but that’s LIFE.

In the most recent issue of Harper’s Bazar, you describe yourself as a seeker, “a seeker of the truth.” Go inside and take a good, hard look………………… and then digest it.

You are blessed…………………….. WAY more than most people in this country, and then there’s the planet to consider……………………… suffering is more common than not, so to lose yourself to your own demons, well, it’s a pity and frankly, it’s something most caregivers of demented loved ones wish they could do.

But we can’t.

We are the ones who must carry on. We are the ones who have to keep going, no matter how much we’d love to hospitalize ourselves for exhaustion. We are the one’s who have to go to work day-in and day-out to earn in a year what you likely spend in a month. We are the one’s who sit on our loved ones bedside and watch the daily horrors of dementia unfold before us. We are the ones who make do…… it is what it is. We are the ones who swallow our medicine and deal with whatever this grotesque disease throws at us……………………… including poop.

In that same article you said that “any kind of unhappiness, conflict, or chaos … is fear-based, insecure behavior that is playing out of some kind of pattern from our childhood.”

I take it, that your unhappiness is rooted in your childhood…………….. well, I am not always happy. I am probably more unhappy than happy and I can tell you, while I may have had issues with my own parents growing up, my unhappiness does not stem from that……………. from the past. It stems from the fact that my mother is slowly dying from a horrible disease that is consuming her gray matter…………………. I am unhappy because her disease has taken a toll on my father, too. I fear for my father. I fear that his sadness might be so profound that it will one day consume him. I am unhappy because I do not have parents who I can talk to about my life, my work, my fears, my joys, etcetera etcetera etcetera……………but that’s life. And life is suffering.

And life can break you……………………….. if you let it.

I refuse to let it.

I wanted to write this letter (it’s actually a blog post) to you and to all of the over-paid, over-glorified celebrities who seek solace in a bottle of booze, drugs, or whatever vice floats your boat, because you know nothing of pain……………… your suffering is gilded.

You (ALL) seek fortune and glory and then you shun it. But here’s a news flash: I helped you afford your homes (yes, plural), the designer duds you sport on your back even when you’re just going to Whole Foods, your children’s posh education……………….. me and my movie ticket (and in the case of other famous people, CDs, magazines, etc).

You read a few books about spirituality, life and it’s meaning and wear a red string around your wrist…………….. the masses follow you, they want to be like YOU………….. and when life hurls a pile of caca at you — a big pile and in public…………… and you let it defeat you. You appear to feel sorry for yourself…………….

Countless caregivers come face-to-face with the devil himself, every single day when they care for a demented loved one………………and I am sure each one would love to call it a day. To say, I don’t want to do this anymore. To walk away from their daily horrors. To check themselves into a place for exhaustion. Because believe me, these people are TIRED.

Frankly, I would love to regain my balance with lots of yoga, a personal chef and views of the Pacific………………… sounds positively healthy.

Alas, I live in an iron cage called reality.

Sincerely,

A girl who really liked you in Ghost.

P.S. I hope you feel better soon.

>>Flickr pic by OlestC

Photo by Meredith Farmer

There’s been a lot of stories in the news this week about NAPA and a push to find a cure for Alzheimer’s disease by 2025. USA Today had an article entitled, U.S. Launches National War on Alzheimer’s.

Well, we’ve seen what happens when America goes to war.

I absolutely applaud the push towards massive action against this disease, I applaud the draft frame work put together by the Department of Health and Human Services, but — insert glass-half-empty-HERE — I can’t help but think it’s just not enough and we’re not addressing the big issues…………….

Caregiving right now. Today.

There simply are not enough resources for primary caregivers NOW. There is simply not enough emphasis on dementia, dementia care, behaviors, etc TODAY. Let’s be honest, we have yet to develop a “cure” for cancer or for AIDS. We have wonderfully beneficial treatments that help prolong life, and yes, we can eradicate certain cancers, but it’s often a brutal treatment process that can take time and a serious toll on one’s health.

I am scared that we are giving desperate caregivers false hope about a cure…………….. I am scared that we are giving young adult caregivers who may develop the disease themselves FALSE HOPE. And if we do find a cure, how much will it cost? Will insurance actually cover your cure? I wonder…………………

I see so many desperate people on Facebook, begging for help, for a cure………………….. WE ARE DESPERATE!

Science has a very primitive understanding of the human brain…………..if you ask me. But then, I’m just a writer…………… still, I say everyone is different. No two bodies are alike. Some treatments work; others don’t or won’t. The human brain is complex. A disease like Alzheimer or FTD affect people differently. You mom may exhibit classic symptoms whereas mine never did. Think about something as simple as Aspirin……………….. it may work to treat your headache, but it won’t put a dent in mine — thank God for Advil.

And what about those individuals dying from some other grotesque form of dementia?

Vascular dementia
Mixed dementia
Frontotemporal dementia / Pick’s disease
Dementia with Lewy bodies
Parkinson’s disease
Huntington’s Disease

The other thing I can’t help but think about is cost. Our current Congress refuses to pay for ANYTHING unless we CUT. So, seriously, how are we going to pay for this? Dementia care costs A LOT of money…………of course, if you’re in Congress this is probably a moot point for you since you have the best health care my tax dollars can afford and a pension to boot…………… In-home care is not free. Most middle-class families cannot balance a full-time job and be a full-time caregiver, and frankly, FMLA is simply not enough time……………….Dementia care is a family disease. It takes a village to care for a demented loved one, and yet, many of us are scattered…………….. strangers come and go………………. they have no real investment in your loved one.

My dad retired to be a full-time caregiver. My mother’s type of dementia, FTD, made it difficult to have a random stranger care for her and she certainly would not let anyone except her husband bathe her — even that was a challenge. She could be combative. She would try to leave the house. She was, at times, very difficult to care for………………. and what about other solutions, you say? Well, the adult day care center said she could not come back because she spit on the floor — not very hygienic. We had little choice about how we could care for my mom. I tried to take her to another adult day care that focused on dementia care……………. it was a no-go. She would not sit still as they read the daily newspaper. She wanted to go home. At least she liked the other place. She enjoyed going.

Dementia patients are not alike. Some will sit quietly. MOST will not.

I am scared for the people who will soon be dealing with this disease because the majority of Americans will not be able to afford adequate care. No one can afford to pay for a nursing home out of pocket, especially if you have a severely demented loved one. My dream nursing home (hey, you might have a dream pre-school for your kid) runs around $7,000 a MONTH. Even if you have Medicaid, services are often limited………. and then let’s talk about the kind of care you get. Most state-approved caregivers/babysitters are not trained to deal with behaviors. And frankly, if you’re making minimum-wage or around that, who would want the job?

Thank you Uncle Sam for putting together a rough draft of what WE the People need when it comes to dementia care and support. Your draft covered pretty much everything. Now let’s see how you’re going to make it a reality; and let’s see if our ineffective (I see no change coming anytime soon) Congress will actually pay for it.

>>Flickr pic by Meredith Farmer