The words my heart cannot express

I'm not someone who cries. Well, at least not unnecessarily.

Maybe I lost that propensity through paramedic training, an unspoken lesson in developing professional demeanor. Maybe the cynicism of a career in the news business did this to me. At any rate, it's unusual for me to cry.

But lately, unexpectedly, my eyes will fill with tears. I do not need to be thinking of my Dad for this to happen, though the tears immediately remind me of him and his existence/life at his memory care facility. I miss him so much, though he is not entirely gone. He is slipping away or fading, as I've heard it called. I say he is stuck between the here and the hereafter.

It was October 2008 when I toured the facility where he would move a few weeks later. The administrator was kind enough and spoke knowledgeably about long term care. He showed us around. Silverado's single-floor building was designed to allow for wandering safely. At meal times, residents could exit their rooms and turn left or right and either way, the hallway would eventually feed them into the dining room. Outdoors, the pathway terrain alternated from pavement to gravel, giving residents the perception of traveling further than reality. There were spots for gardening, a cage full of parakeets and canaries, a juke box, and, best of all, dogs who lived there.

The tour began to feel a little like the tours of day care centers I'd taken not too many years before when my children were babies. Directors of day cares similarly touted their centers' features, policies and various activities.

The Silverado administrator let us peek at some rooms, and then he pointed out the memory cases on the walls outside of each resident's room. These were glass-enclosed shelves similar to shadow boxes, but bigger, and they reminded me of the cubby space at daycare that parents are invited to personalize with photographs and mementos.

Before I knew what was happening, I was sobbing, crushed by the thought of the memory case that would be my Dad's. He was 68 years old. How were we supposed to boil his life down to three shelves?

I cried, but I quickly composed myself. Just as I do now whenever my eyes start watering.

"There is a sacredness in tears.

They are not the mark of weakness, but of power.

They speak more eloquently than ten thousand tongues.

They are messengers of overwhelming grief...and unspeakable love.”

--Washington Irving

An extended family, a photographer's studio and a camera

We gathered for what we knew would be our last formal family portraits. It was Thanksgiving 2008, just after Dad had officially moved into a memory care facility. His wife, two children and six grandchildren donned clothing in matching shades of navy and khaki and directed him into a photographer's studio.

Dad was in decent spirits that day. He would generally sit where he was asked and smile when he was told. In the midst of the sitting, my then 11-year-old son held my point-and-shoot camera--and snapped this photo of his Grandpa.

It became my favorite after my son explained why he took it: because Grandpa looked as if he was looking for something and didn't know what.

What's in a name?

Both my first-born and my brother's first-born children have the same middle name as their grandfather: Cleveland.

It's an old family name.

A paternal uncle with a few "greats" before his name was Grover Cleveland, who was the 22nd and 24th president of the United States. He died just over 100 years ago, in 1908. He spent part of his boyhood growing up in Fayetteville, NY, and I drive by Academy Street where his former home still stands almost every day.

Look at the pictures of Cleveland, the president, and compare the stately way with which he holds his head with the looks of Cleveland, my Dad in this picture taken at Silverado Senior Living where he has lived since October 2008.

President Cleveland was a lawyer and a long-time bachelor. He served as mayor of Buffalo and governor of New York before becoming president, and so far he is the only president to serve two nonconsecutive terms. Historians say he was known for his laser-sharp focus, and they say he was at first ill at ease with the niceties of life in the White House. He's described as "honest, fearless and hard working," in the 2006 Scholastic children's book, "Grover Cleveland."

One of the many Grover Cleveland biographies says much about the man with its title, "Grover Cleveland: A Study in Character," by Alyn Brodsky. The book quotes another biographer who calls Cleveland a paradigm of honesty, integrity and resolution who acheived greatness through strength of character; a man who, though flawed, exemplified "courage that never yields an inch in the cause of truth, and that never surrenders an iota of principle to expediency."

Of course, strength of character isn't necessarily handed down through generations, though I'd like to think it is. And I realize that many people hold their bodies square and firm for portraits, making them no more or less "stately" than either Cleveland. Still, I like to think we can trace some traits through our lineage.

Is/was my Dad honest and hard working and principled because his namesake was? Have my son and nephew inherited those traits, too? Sometimes I fret about what their genes hold: the same frontotemporal dementia that afflicts my Dad? Or something benign, like fearlessness or laser-sharp focus, even an aptitude for the law?

18 months later: physically healthy -- but my how that neuropsychological test was accurate

My Dad amiably answered the doctor's questions, even though the answers he provided were wrong. When asked to extend his arms, or draw shapes on paper, my Dad complied.

On the sidelines of the exam room in this geriatric psychiatrist's office in October 2008 at a medical center in downtown Dallas, I watched my Dad fail what I have since learned was a neuropsychological test. My Mom sat on my right. My then 10-year-old son sat on my left, and we all watched quietly. We encouraged husband/Dad/Grandpa with reassuring smiles and nods. But we all recognized he was not doing well.

My son stayed with his Grandpa in a waiting room while the doctor gave his assessment. It was most clearly frontotemporal dementia. He explained what that is. He mentioned some signs of Parkinson's disease, too. He told us Dad would likely live from 18 months to 3 years.

Which kind of knocked the wind out of us.

Physically, my Dad is so healthy. He was then, and he remains so now, 18 months later.

It would be easy--indeed, it was tempting--to dismiss the psychiatrist and the oddball "test" my Dad had "failed." But the doctor spoke with confidence about signs and symptoms we had not recognized previously. We still think back on things Dad said or did and wonder...was that the beginning of his decline? should that have signaled us that something was wrong with his brain? That gaze in his eyes? The appointments he showed up for a day early? The trouble he had hearing--or was it his comprehension that was off?

I asked the psychiatrist what would kill my Dad. He has this fatal disease, for which there is no treatment, but I wondered what would finally take my father down. Would his heart just stop? Would he just lapse into a coma?

The doctor explained that many people with FTD die after falls, or by choking on food, or by an out-of-control infection. They become incontinent. They forget how to swallow. It was both disconcerting and comforting to hear from a professional what lay ahead. My own subsequent research backed up every word.

So here we are, 18 months later. Dad very distinctly has that Parkison's gait. On most days, he is unaware of his loved ones, and I doubt that any pictures or memory cards I have sent him make any sense to him anymore--or that he can find them. I bet he still has his sweet tooth, but maybe not, (since some dementias steal taste, too.)

He used to fight the caregivers who tried to undress him for showers; now several of the female residents are on his arm. When we visited him once at Silverado where he lives now, Dad emphatically pointed out baboons in the trees outside his window. Since he managed a wildlife amusement park for several years, this "delusion" made sense. Sometimes I wonder if he still sees them. Or if FTD has replaced those delusions with others. He's also incontinent, a progression that adds $500 to the monthly bill.

And even though all of this was predicted by the doctor, even though we watched "Away From Her" and read Lisa Genova's "Still Alice," even though we prepared ourselves in the best ways possible.... sometimes I want to go back in time to that exam room and hear the doctor blame my Dad's confusion on his hearing, or a brain tumor. Something that could be fixed. Or if not fixed, treated. Or if not treated, immediately fatal. Anything but this lengthy deterioration that seems to be playing out just as the doctor predicted.

A dilemma for caregivers: How to occupy the time

My father's move to a memory care facility was much harder on us than it was on him. When he came to Silverado, he believed he ran the place. They placed him in an "office" to stuff envelopes, had him "lead" tours, allowed him to greet visitors and collect the mail from the mailbox at the street.

I fretted about how he would spend his days, and what I could do to help add some purpose.

A friend told me what helped her mom: a box (or cannister) full of memories written on paper. So I cut card stock into rectangles and typed memory after memory, a sentence or two each, and invited friends and relatives to do the same. Slowly we filled a plastic box the size of a shoe box with which--for a while--my Dad would not part. Of course they were all good memories. That was important. But to him, each time he read them, he relived those good times.

My Dad loved reading, but I knew he was no longer able to devour the Thomas Jefferson biographies he used to love. I struggled to find short stories that would hold his interest. I resorted to big coffee table books with photos he might like, and the "I Spy" series of children's books, (hoping he would not realize they were children's books.)

I'd send him letters and/or packages every other day, since I knew he would be getting the mail. But beyond that, from my distance, I was at a loss. Cynthia Green wrote recently in The New York Times' "The New Old Age" column about some ideas, and collected several from readers. Here are 10 of my favorite:

* Adapt a lifelong hobby--for instance, someone who loved cooking could help mash apples for applesauce; a gardener may work with planting small pots.

* Capitalize on interests--a golfer may enjoy watching videos of the game; a gardener may enjoy coffee table books featuring flowers, or even leafing through garden catalogs.

* Scrabble! Verbal skills may diminish, but this game is worth a try.

* Sort through a collection of buttons. They may tell stories about the clothing buttons came from, or comment on each button's characteristics.

* Jigsaw puzzles, the ones that are not too complicated. (You can have them made from a favorite photograph.)

* Sing the first line of a familiar song. They may sing the one that comes after.

* Create a photo book and/or photo DVD that they can look at and share with other residents whenever they want.

* Rhyming games. Have them come up with words that rhyme with a word you choose.

* Watch the cars go by, and start conversations based on what goes past.

* Painting. Potentially messy, but good way to stimulate creativity.

Certain about our times in Uncertain

They say it's the stomping grounds of the legendary Bigfoot, but our times at Caddo Lake on the Texas-Louisiana border never included a sighting. Our family camped in a rustic cabin in Uncertain, Texas on the banks of the swampy forest that is Caddo Lake. We did this during football season, for I remember listening to Cowboys games via radio. I remember hooking catfish. And traveling by boat to nearby restaurants. And how my Dad--who apparently explored the area extensively as a boy--could navigate without a map.

To understand what a big deal that is, you have to know Caddo Lake.

It's Texas' only natural lake. (Yes, all the rest are man-made.) It's the largest natural freshwater lake in the south, containing the largest cyprus forest in the world. Its trees are 400 years old. And they have a creepy beauty about them. It's a cinch to get lost within them, to look down one channel and convince yourself that's the way back to the cabin, only to discover you are deeper in trouble. That's probably what feeds the legend of Bigfoot. A person could easily disappear within, and survive upon, Caddo Lake.

We never got lost with Dad, though. Either he knew his way around, or he faked it well enough to get us where we were going.

I have good memories of our long weekends in Uncertain. And I was happy to see it made Texas Monthly's "bucket list" of 63 things all Texans should do before they die. I do not know if my Dad had his own personal bucket list, (though he did many bucket list-able things--Machu Picchu, scuba, Alaska) but I have no doubt if he did, Caddo Lake was on it.

The New York Times' "A passage into primeval on a bayou lake in East Texas"

Dementia destroys the father-daughter bond

"Do you have a boyfriend?" he asked me. He was about 84 years old and interested in a date.

Sitting before him with my young son on my lap, I gave him the bad news: "No, but I have a husband and two kids. And I am your daughter, Dad."

My father's confusion was the consequence of his battle with Alzheimer's disease. One day he recognized me, the next, maybe not. Though my brain could process that, my heart could not. No matter how realistic I tried to be about my father's decline and our awkward exchanges, I found it impossible to accept that he really didn't know me.
Kathy Tyrer writes in the Los Angeles Times about realizing that the father-daughter connection she had with her dad is gone. That's something to which I can relate.

In my case, it has been a gradual realization. Did our relationship disintegrate when he could no longer safely drive, and I was the one driving his car? Was it when he stopped saying my name or recognizing my voice? Or when I knew I could no longer seek his guidance?

If I lived close enough to visit at his memory care center, would that just prolong the process, make it more evident, more painful? Probably. Though, distance doesn't seem to make it easy. If I lived near my Dad, I could have transitioned if not from daughter to caregiver, at least to care helper or care over-seer, or even to daughter who dutifully visits.

From afar, I'm just daughter who reads about frontotemporal dementia and feels frustration and anger at how the disease has taken my Dad away from me.

Vintage objects can soothe those with memory troubles

One muggy, hot summer day in San Antonio, my Dad wore a khaki jacket with a stitched Six Flags emblem on the breast. He would not remove that jacket, no matter that his face was red and sweat beads covered his forehead.

We were at Fiesta Texas, in typical blazing heat, and we couldn't reason with him to peel down to the T-shirt he wore beneath. So we conspired to stand near a ride that splashed. If he got drenched--along with the rest of us, of course--surely Dad/Grandpa would remove the jacket. It worked.

We've joked about his attachment to that jacket ever since.

Recently, I've come across an explanation for why--maybe--Dad is so attached to his Six Flags jacket.

The health group Bupa Australia says it has evidence that providing famliar objects from the past can help settle dementia patients. The objects they're talking about are clothes lines, laminated kitchen tables, vegetable gardens and other items that people of a certain generation may appreciate.

Don't you bet certain music,
television shows and recipes
could have similar effects?

Maryann Curry, Bupa's group director of nursing, said there was anecdotal evidence that providing familiar objects from the past did help to settle patients and the company was examining just how significant a benefit it could be, particularly for patients who tended to aggression and hostility.

Maryann Curry, the group's director of nursing, told The Sydney Morning Herald that the pleasant experience might only last a minute or two, but the benefits in patient wellbeing lingered for some time until it was overridden by another sensory experience. "Their facial expression actually changes. We often see in their faces the joy of that moment. They are comfortable in that moment," she told the publication.

For many American Baby Boomers, vintage objects may be the laminated kitchen tables and the clotheslines. For my Dad, that vintage object is his Six Flags jacket.

Amusement parks as a metaphor for life

Whenever we visited amusement parks together--whether at a park he ran, or one at which he was a visitor like everyone else--my Dad always picked up trash. He could not help himself.

If someone had discarded a cigarette butt, a drinking cup, a candy wrapper onto the ground, my Dad would pick it up and carry the trash in his hands until he found a proper receptacle.

Having a father in the amusement industry meant my brother and I got to spend lots and lots of time at amusement parks. We would go to Six Flags over Texas after school each day. One summer, when Dad ran Old Chicago, we spent the summer riding rides and playing carnival games. Another summer we stayed in Knoxville, Tennessee for the World's Fair, since Dad ran the midway there. My brother has followed Dad's footsteps into the amusement industry. I've watched from the sidelines.

I've watched, over the years, how Dad pays attention to keeping the lines moving. There's a whole science to those queues we stand in to ride roller coasters. Park managers don't want us standing in line all day; if we're standing in line, we're not buying lemonades and souvenir T-shirts and balloons. I've watched how Dad pays the same respect to the parking lot attendant as to the visiting dignitary. And, of course, how he picks up trash without qualm, in order to keep the park--his or someone else's--looking nice.

I suspect he loved his industry from the very first job he had as a ride operator. I know he loved roller coasters and thrill rides; I inherited that gene from him. He told me he wants to be cremated rather than buried because he would rather have cemetery land available for an amusement park.

When I was a baby, above, he would carry me through the park on his shoulders or in his arms. Two years ago, on our last trip to an amusement park together, I tried to hold hands so he would not wander. Eventually, we came to The Scream, below.

And of course my Dad could not help himself. He rode that ride with gusto, like the grandchild sitting next to him, not dwelling on the ups and downs or what lays ahead, but just enjoying the moment.


*** UPDATE ***
The morning after I posted this article, I was brushing my teeth. That picture you see at the very top of this post sits in that porcelain frame atop a high shelf in my bathroom. Very securely, I might add.

Well, it leapt from its perch, landing on my arm. It did not break. And, though heavy, did not hurt me.

Of course I risk sounding loony, but...I suspect the frame was my dad, somehow, reaching out to me.

Orange prompts pondering on life with dementia

He's always in my heart, of course, but once my Dad is in heaven, I'm sure that he'll pop into my mind often--like when my daughter grabs an orange at breakfastime.

I was reading the newspaper. She was digging her fingernails into the skin of an orange and removing small chunk after small chunk of rind. Eventually she got to pulling away the stringy pith. Juice ran down her hands. I told her I would have sliced the orange for her, if she had asked.

"One of my friends puts the orange in his mouth and bites the skin off," she told me.

"You know who else does that?" I asked, suddenly remembering. "Your Grandpa."

From my childhood all the way into my adulthood, my Dad would bite into the skin to start peeling an orange. Often he could peel the entire fruit in one intact piece. He probably started perfecting his trick in childhood, maybe about the age of 9, Sabrina's age. It's something I never picked up.

Sabrina was mildly impressed. "Do you think he still does?" she asked.

What a good question.

I wondered. I wonder, still. Is orange-peeling a skill that dementia would allow? Is it a habit so well-ingrained as to not be taken from my Dad by his disease? He can't reliably recognize his grandchild, or child, or wife. But I bet he can still peel oranges.

So instead of getting all sad about how oranges have made a longer-lasting impression on my Dad than I have, I look at that piece of fruit and say a quiet little 'thank you' for the memories.

To my daughter, I say: "I think he probably does."

Modern Love: 'Sweetest at the End' essay in The New York Times

Of course Elinor Lipman's essay in The New York Times' "Modern Love" column caught my eye. Some promotional type summarized: "Dementia turns an elegant man into a gregarious child."

That elegant man was her husband, Bob, whom she was married to for 30-plus years. Bob, who was a radiologist. Bob, who was 57 when his wife and grown son noticed something was amiss.

I read to where she described "the cruel disease that felled him was frontotemporal lobe dementia--rare, untreatable and fatal, and one that often turns its victims into violent, angry and inappropriate versions of their normal selves."

My Dad has become those things. Sadly. Predictably. Just like the neurologist who saw him in October 2008 said he would. Violent at times, angry at times, inappropriate at times. But still, often, himself. My aunt visits, and he pulls out her chair like the gentleman he's always been.

Elinor writes that FTD would "change and diminish" her husband, and then kill him three years and eight months after the first signs of trouble. Eventually, his language was whittled to a four-word answer to everything: "I'm a happy guy," he would say.

Which of course makes me wonder about my Dad's final words. His voice still has his chipper, inviting tone, though the words he says no longer plug into conversation. Will they encapsulate his life in some way? Have a double meaning? Be humorous? Make any sense at all?

Read Elinor's essay.

Happy 69th birthday to my Dad

I can't recall missing one of my Dad's birthdays since my adulthood. Growing up, we celebrated his special day the way we did everyone in the family. The birthday person got to choose their favorite restaurant, and we had homemade cake at home. Once I was out of the house, the milestones were celebrated via U.S. Postal Service--a small gift and a carefully selected card.

This year, I sent a card. I doubt he will understand who it is from. He probably will not realize today is his birthday. But I sent it just in case. What if the frontal temporal lobe dementia that's got him in its grip gives him a good day? Some days are, after all, better than others.

My Dad didn't age until dementia took over, in 2008. He always looked younger than he really was. In this picture, he is 64. He is standing infront of the little clinic in Jacksboro, Texas where he was born. At the time, his family lived in nearby Archer City, (home, too, to author Larry McMurtry.)It was important to my Dad that we travel back to Archer City on Fourth of July weekend every five years for a family reunion that pulls together kin from all over the United States.

When we were there in 2005, we stayed at the Spur Hotel, at the intersection bearing the city's single stoplight, checked out the still-in-renovation Royal Theater, and looked through all of McMurtry's book stores. (Even running into McMurtry, himself, in one of them.) We ate at the Dairy Queen, even though the city boasted a brand new Sonic. Dad showed us the rodeo yards, and the house where he grew up. We visited the cemetery where our ancestors are buried. And we toured the Archer County Museum and Jail, a sandstone building from 1910. A docent warned us to be on the lookout for rattlesnakes as we showed ourselves around the property and climbed to the third floor to see the hanging gallows.

Dad enjoyed showing his grandchildren his roots. And I'm glad he got to revisit them, himself, for one last time.

He reminds me of my Dad

I see my Dad in my memories now. He's so far gone, mentally, and so far away, physically, that memories are pretty much all that is left. Then one day, I came across Bruce Bane's blog. And, somehow, this stranger's words make me feel closer to my Dad.

Bruce Bane writes the "Living with Dementia" blog. He has the same diagnosis as my father: Frontotemporal lobe Dementia. He is a writer, a poet.

The first post is from Jan. 19, 2010. It's titled "After Church:"

Too many faces
Too many voices
Like a thundering waterfall
Falling on me
And I can’t remember how to swim

This must be how my Dad felt, when we took him to restaurants, amusement parks, anywhere lots of people were gathered.

Bruce writes about the challenge of just thinking, and I imagine my father could identify:

I start to remember something
But it retreats into the distance
Around a corner, out of reach, lost in the mist

He writes about seeing himself in the mirror, something most certainly my father did and, likely, experienced similarly:

The man in the mirror must be me
But there’s something unfamiliar about him
Something I can’t describe
I recognize him, I know him, but only in part
And then I understand
I know him only in part because that’s how I know myself
I am growing more and more unfamiliar with myself

My father's sense of humor would appreciate Bruce's observation of a "positive" about dementia--that of being able to see the same movie twice, three times, even four, and each time experiencing it like it was the first time.

It makes me sad to think about my Dad's situation, to try to understand what he's going through. (I used to say "what he's suffering," but a friend convinced me how that word may not be precise.) Because he's going through this, I feel it my responsibility to try to understand. Bruce helps me do that, even if he chokes me up at the same time.

"I know what I want to say, but can’t seem to get it out," Bruce writes, and I think how awful that must be.

"Gradually it feels like I’m becoming less of who I am," he writes, and I cringe, thinking how apt a description.

Bruce's blog is like messages from my Dad. They are heart-warming and at once heart-breaking. "There will come a day when I will wake up without wondering, without being tempted by feelings," Bruce writes, "the day when dementia is no longer just a part of me, but all of me.”

Read Bruce Bane's blog for yourself.

If there were a test for dementia, would you take it?

Especially if Alzheimer's disease "runs in the family," we listen when scientists talk of ways to predict who will develop such a dreadful disease. We've heard more about the brain than we care to, with its tau proteins and plaques and neurofibrillary tangles. Of course brain research is teaching us about the causes of dementia, and maybe it will eventually lead to methods of prevention or treatment. Will those advances come in time for us? For our children?

Earlier this year, research in the Neurobiology of Aging Journal explained how elevated levels of phosphorylated tau231 in cerebrospinal fluid may be used to diagnose a healthy person who will develop Alzheimer's disease. Researchers from New York University's School of Medicine said the levels could predict future memory decline and the loss of brain gray matter in the medial temporal lobe--a key memory center.

"Our research results show for the first time that elevated levels of P-tau 231 in normal individuals can predict memory decline and accompanying brain atrophy," said lead author Dr. Lidia Glodzik, an assistant research professor in the Department of Psychiatry at the school's Center for Brain Health and Center of Excellence on Brain Aging. "Our findings suggest that P-tau231 has the potential to be an important diagnostic tool in the pre-symptomatic stages of Alzheimer's disease."

Which is great.

Or at least, potentially, a great advance.

It's quite a ways off. When I go for my physical in a couple of weeks, I won't be able to ask my doctor to run this test and then...know. But there's a good chance something like this will be available if not in my lifetime, certainly within the lifetimes of my children.

We know what Alzheimer's and dementia do to the ones we love. We know how the diseases take them from us long before their bodies fail, leaving bits of their spirit and personality glimmering--only every now and then--in their eyes. One merciful aspect of the disease may be that our loved ones did NOT know what was happening to them until it already was. By the time symptoms of memory failure became evident, hopefully, they were too far gone to notice. What appears to us as suffering may be, to them, just the way life is.

Science may wind up changing that for us.

We may have the option of learning way before symptoms emerge whether dementia is part of our future. So, what if it is? What then?

Read the story in ScienceDaily.

Read the story in The Medical News.

The abstract in the Neurobiology of Aging.

Contemplations over the loss of a pet

One of our guinea pigs died today. I raced home from work but missed her last breath by a few minutes. She was about 6 1/2, which is a little longer than the expected lifespan of a guinea pig.

I remember when she joined our family.

My Dad was visiting over the summer of 2004 and while he was here, he got my son (7 at the time) his birthday gift from Grandma and Grandpa: two guinea pigs.

My Dad had grown up in the country, so he was comfortable with rodents. He told many stories about his mother warily opening dresser drawers, fearful of what rodent (or other creature) he might have stashed in there for safekeeping. He set up the cage and bedding with my son and helped him get acquainted with the new little guinea pigs who would become part of our family.

Eventually Allison provided my son with what he describes as the best day of his life. He came home from school to find three baby guinea pigs in her cage. (We had noticed she had been getting rather fat.)

Lately we noticed she had been getting rather frail. My son came home from school today to find her unable to stand. By telephone, he described her limpness, and her legs that were shaking. "Hold her," I coached him. "Let her feel you touching her. Pet her, and love on her."

I arrived home to find him in tears. She was gone. And he felt awful about how she had gone: right there, with him holding her.

I thought about how lucky she was. "Actually," I told my son, "of all the ways there are to die, the way she went is probably the best."

And then I wondered if--prayed that--his Grandpa would be so lucky.

Examining the football-dementia connection

A study that came out in fall 2009 was important because it showed that NFL players suffer dementia at rates vastly higher than those of the general population--including 19 times the normal rate for men ages 30 to 49. It was the first "evidence" showing what the NFL had long denied: that of cognitive decline among its players.

The study was from the University of Michigan Institute for Social Research. Researchers surveyed 1,063 retired players and found that incidence of heart disease was lower, but incidence of arthritis was higher. Noting study limitations, they also found a significantly higher incidence of dementia.

Here's the New York Times story about the study, and a followup story criticizing the study.

Here's a copy of the study.

"We conducted some interviews with a 'proxy reporter,' generally the wife, of some players who are unable to answer for themselves. We did not administer cognitive tests and did not conduct neurological examinations. The only information we collected about dementia was to ask the respondent (or proxy) if they had ever been diagnosed with dementia, Alzheimer’s disease, or other memory-related disease. Diseases of memory are rare, but NFL retirees report higher rates," wrote researchers David R. Weir, James S. Jackson and Amanda Sonnega. The incidence of dementia among American men over age 50 is 1.2 percent. Among retired NFL players over age 50, it was 6.1 percent.

The study raises questions about the connection between concussion and dementia.

When I heard about the NFL study, I thought of my Dad. The place where he lives now--Silverado Senior Living--is the place the NFL has contracted with to provide care to former players and their families who suffer Alzheimer's, Parkinson's or other forms of memory impairment.

What would Dad say about this dementia blog?

Would Dad mind that I mention him, that I post his picture on this DementiAwareness blog? That question nags at me.

My father was always very proud of my work as a journalist. And I enjoyed, when he came to visit, that he could open the daily newspaper and read articles written by his daughter. But those stories weren't about me, or him. They did not publicize our family.

This blog sort of does.

It's too late to ask my Dad how he feels about, well, pretty much anything. We can't trust much of what he says (he often says he's hungry just after finishing a meal) so I have to imagine what his response would be, based on the 44 years I've known him. Would he be proud of my work? Or embarassed of the content and its occasional reference to him? Would he feel shame?

My father never sought publicity, at least not for himself. But he was willing to promote certain causes. When I was little, he posed for a magazine cover during the energy crisis, bundled in a blanket for a story about energy conservation.

He was a lover of science, too, and when he watched TV, it was often a documentary or educational program. I remember watching Mutual of Omaha's Wild Kingdom with Marlin Perkins together every week growing up.

So I'm thinking that if he were in his right mind, my Dad would relish learning about frontotemporal lobe dementia. I think he could appreciate the mystery of the disease, if he weren't suffering from it so. I even think he would forgive me for sometimes referring to him in the past tense, even though he is still alive and, at least physically, well.

Putting a name on the feelings of loss before death

A therapist / friend put a name on what I've been going through for almost two years, since it became clear that something was wrong with my Dad. She called it "anticipatory grief."

It's a feeling of loss before a death occurs.

Harriet Hodgson explains for the American Hospice Foundation how anticipatory grief "has been described as a 'normal process,' but life is far from normal if you're going through it. ... You may have bouts of crying, for example, a symptom that upsets you and those around you. You may hold back your tears because you have to be strong for your loved one. All through the day you have a choked feeling in your throat. Holding back tears takes lots of energy and, before long, you're exhausted."

Symptoms include: denial, mood swings, forgetfulness, disorganized and confused behavior, anger, depression, feeling disconnected and alone, anxiety and dread, weight loss or gain, sleep problems, nervous behavior and general fatigue.

Hodgson cites author Edward Myers' description of a slow decline as being like that of a glacier "massive and unstoppable, grinding you down," (as compared with a sudden death hitting more like an explosion.)

Beth Erickson writes on the Strength for Caring caregiver Web site about the drawback to witnessing a loved one's slow demise. "As the loved one’s condition worsens, you may grieve with each downturn. You may experience feeling a sense of helplessness as your loved one fights for life. You may feel as if you are living with a pit in your stomach that won’t go away as you await death’s arrival."

I guess it's like anything else. There's value in learning what we can about the glacier, even if it is unstoppable. Knowing why we're ground down, knowing why we feel that pit in our stomachs can help us cope. Just knowing that what we're going through has a name -- anticipatory grieving -- reminds us we're not alone.

Introducing Amber Smith, medical journalist interested in dementia and Alzheimer's

This is my Dad, who--like so many others--hovers between the here and the hereafter in a body gripped with dementia. It's a sad situation, one with which many of you can identify.

For 22 years, I've covered health and medicine in some capacity for The Post-Standard in Syracuse, NY. I'm a devoted and passionate journalist who likes learning, enjoys writing and feels grateful to play a role in helping to make sense of our often-confusing healthcare system.

My background includes training (and volunteering) as a paramedic until parenthood provided other things for me to do with my time. I also spent three years to obtain a master's degree in Health Services Management and Policy. For a while, I taught at Syracuse University's S.I. Newhouse School of Public Communications.

I'll blog here regularly, with news and information of interest to people affected by Frontotemporal Dementia (FTD) and Alzheimer's disease. Check back often. You can also follow me on Twitter, where I'll "tweet" each post.

Meanwhile, let me know if you've got a question related to dementia. I don't pretend to know everything, but I am pretty good at digging to find answers.

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