Fade to Blank: Life Inside Alzheimer’s

Fade to Blank

Life Inside Alzheimer’s

Missing memory lane

The meandering country road, and the prison at the end of it, were untouched frontiers for David Hilfiker.

But, as the Buckingham Correctional Center came into view, he was pricked with a slight twinge of déjà vu. The facility at the end of the lane looked vaguely familiar, but that was to be expected and could easily be explained away as an anomaly born of past experiences.

The archetype of the traditional prison façade was not an unfamiliar sight for David. He had spent a significant portion of his career as a physician providing care and support for drug addicts with HIV and AIDS. He’d also been making regular trips to various prisons to see his friend, convicted murderer Jens Soerig, whom David believes to be innocent.

Preoccupied by his impending visit with Jens, David didn’t give much thought to that brief brush with déjà vu until the center’s chaplain came over to where they were sitting. David’s introduction and outstretched hand caused a quizzical look to cloud the chaplain’s face. “Yeah, I remember. You were here a couple of months ago,” he said.

It was David’s turn to appear perplexed. He’d never been to this particular prison, and he’d certainly never met this particular chaplain.

Always a bad one for remembering names and faces, David brushed off the incident, placing the burden of blame on his chronically shoddy memory.

Once the chaplain had moved on, David looked to Jens for confirmation that he had, in fact, never been to Buckingham before. But his friend refused to lie. “Of course you have. Three or four months ago,” he said.

Still confused, David let the matter drop, spent a few more hours with Jens, and drove home.

After returning home to the townhouse he shared with his wife, Marja (mar-ee-yah) David immediately consulted his calendar. One glance told him everything he needed to know. Jens and the chaplain were right—it was six months to the day since David had first been to Buckingham Correctional Center.

Between driving to and from Buckingham and spending time with Jens, David estimated that the trip he does remember took him about ten hours total. He was flabbergasted; an entire half day had faded from his mind. “I remembered nothing from that visit—I still don’t,” he admits.

And that was only the beginning.

It would take David a few years after the incident at the prison to seek out and receive his diagnosis: mild-cognitive impairment, most likely Alzheimer’s disease.

7 years, 17 minutes

Over two decades of experience as an emergency medical technician (EMT) wasn’t enough to prepare Rick Phelps for what would happen during his final run.

An early morning dispatch led Rick and his team to the house of a four-year-old girl who was in the throes of a serious seizure. A blue hue was beginning to overtake the child’s skin as the oxygen slowly drained from her blood. She survived the trip to the hospital, but an hour’s worth of resuscitation efforts proved ineffective and the young girl died soon after arriving.

Being in the emergency medical field for so long, Rick was no stranger to death. But as the news of the child’s passing washed over him, the veteran responder was astonished by the unusual intensity of his emotions. “This one was different. I knew it was different and I knew I just couldn’t do this type of work anymore,” he says.

Rick had been having trouble remembering important things for some time; the names of streets during dispatches, the meanings of particular codes, the shortcuts that could shave precious seconds off the time it took to respond to an emergency. These instances caused him great concern—what if he made the wrong turn when time was of the essence? What if his mistake cost another human being their life?

It hadn’t happened yet, but the possibility of disaster haunted Rick each time his crew received a call. Torn between a passion for helping those in need, and the fear that one day his mind might betray him, Rick made the heart-wrenching decision to retire.

For nearly seven years, Rick had been mentioning his cognitive concerns to his doctor. The physician first attributed Rick’s troubles to depression, ignited by delayed grief over the death of his daughter, Jody, who passed away suddenly in 1997.

Rick missed Jody terribly, as any father would, but he didn’t think her death was the cause of his problems.

Yielding to the knowledge and experience of his doctor, he agreed to adopt a regimen of antidepressant and antianxiety medications. When the prescriptions failed to make any significant difference in his condition, job stress was named as the next likely culprit.

Again Rick was skeptical; he loved being an EMT, and harbored an abiding passion for the work that trumped any stress inherent to the profession. He resolved to push for an answer that made sense.

Finally, two weeks prior to the call that heralded the end of his EMT career, Rick’s doctor referred him to a neurologist. The specialist performed a series of cognitive functioning tests before calling Rick and his wife, Phyllis June, in for a follow-up appointment.

The life-changing visit with the neurologist lasted 17 minutes. Rick left the office with an Exelon patch and a terminal diagnosis: early-onset dementia, most likely Alzheimer’s disease.

A mother’s instinct

Jean DelCampo had a motherly spirit that pervaded every aspect of her life. When her children were young, she prided herself on keeping an immaculate house and having dinner on the table by 5:00 pm every night.

So when Jean drove by a gentleman on the side of the road who looked tired and alone, she felt compelled to stop and offer him a ride. After driving the man to the next city, he got out of the car and walked off. Before he left, Jean gave him her coat so he wouldn’t catch cold. It was only later that Jean would realize the potential danger that her motherly instincts had exposed her to.

The incident was the latest in a series of unexplained driving mishaps for Jean, who seemed to keep getting lost, even though she knew every street in town. Her doctors said her troubles were being caused by anxiety, bipolar disease, depression—but none of their treatments were very helpful.

Jean eventually moved in with her daughter, Michele De Socio, because she could no longer live safely on her own.

One weekend Michele and her husband went away, leaving Jean in the capable hands of Michele’s sister, Gina. Everyone assumed Jean would make the transition with ease, but soon after Michele and her husband left, Jean suddenly began to shake uncontrollably.

An emergency trip to the hospital led to a stint in a psych ward that Michele refers to as “19 days of hell.” A neurologist eventually ordered a CAT scan that revealed the frontal lobes of Jean’s brain were all but gone, and she was sent to a skilled nursing facility for rehabilitation.

The doctors still couldn’t decide on Jean’s diagnosis, but the caring mother had made a decision of her own. She knew she was sick and would only get sicker. She would protect her family, even from herself. “I’m not coming home,” she told her daughters. “I want to stay here.”

Soon after Jean’s decision—which Michele and Gina fought tooth and nail—a neurologist eventually named Alzheimer’s as the cause of the older woman’s cognitive troubles.

Diagnosis, Doubt and Denial

Alzheimer’s disease is the most common manifestation of dementia, an umbrella term used to describe a series of brain disorders marked by a variety of cognitive issues, including confusion, hallucinations, memory loss, problems with thinking and reasoning, and eventually, a decline in the ability to perform tasks of daily living (i.e. eating, bathing and dressing).

Gradually fading memories are a well-known hallmark of Alzheimer’s, but the disease affects the brain in other ways as well, many of which are not fully understood by scientists. What is known for certain: Alzheimer’s slowly severs the connections between brain cells, killing neurons and literally shrinking the size of an individual’s brain.

David Hilfiker

68, diagnosed with Mild Cognitive Impairment, probably Alzheimer's

View Slideshow

Read David's Blog

Marja Hilfiker

69, David's wife

Rick Phelps

59, in the middle stages of
Early-Onset Alzheimer's disease

View Slideshow

Read Rick's Blog

Phyllis June Phelps

56, Rick's wife and primary caregiver

Jean DelCampo

72, in the late stages of Alzheimer's disease

View Slideshow

Michele DeSocio

47, Jean's daughter and
primary caregiver

Read Michele's Blog

Neuron

Beta-amyloid plaque

Tau tangles

A Neuron Affected by Alzheimer's Disease
©Cleveland Clinic, 2013

Biologically, what separates Alzheimer’s from other forms of dementia are the abnormal accumulations of beta-amyloid protein found in patients’ brains, according to Jagan Pillai, M.D., Ph.D., a staff neurologist and Alzheimer’s disease expert with the Cleveland Clinic Lou Ruvo Center for Brain Health.

Formally called the “Amyloid Cascade Theory,” this process has been the primary focus of Alzheimer’s treatment research for the past three decades.

David, himself a former physician, cuts through to the colloquial, referring to the overall effect of beta-amyloid accumulation on a person’s brain as “gumming up the works.”

Beta-amyloid proteins are created when a larger protein, called amyloid precursor protein (APP), is cut up into smaller pieces by an enzyme, beta-secretase (BACE-1).

Normally, the brain can effectively isolate APP and BACE-1 from one another, reducing the amount of beta-amyloid that is produced. Any rogue proteins that are created are quickly removed. In people with Alzheimer’s, something disrupts this process. Beta-amyloid isn’t effectively cleared out; it builds up and forms clumps. These clumps clog the connections between brain cells, causing them to weaken and die.

Other potential contributors to neuron death have also been identified, including inflammation and another protein, tau. Excess inflammation caused by the immune system’s response to beta-amyloid accumulation in the brain can damage healthy cells. Tau proteins, which normally serve as conductors—ferrying nutrients and building materials throughout the cell network—can disintegrate and collapse in people with Alzheimer’s. The resulting “tangles” hasten cell death.

Dr. Pillai notes the possibility of additional underlying biological mechanisms involved in the development of Alzheimer’s that science has yet to uncover. For him, these other factors represent the biggest unknown of a disease that is marked by uncertainty from the beginning.

There is currently no way to know for certain whether a living individual has Alzheimer’s disease. An undeniable diagnosis requires a brain autopsy.

The physicians treating David, Rick and Jean are all incapable of providing an official Alzheimer’s diagnosis—they must instead qualify their preliminary determinations as “probable Alzheimer’s.”

Jagan Pillai, MD, PhD, neurologist with the Cleveland Clinic Lou Ruvo Center for Brain Health

Dr. Pillai notes that Alzheimer’s can be diagnosed in living people with 90 percent accuracy, via a battery of tests—including MRI, PET and CT scans, as well as a series of cognitive and neuropsychological exams.

As is often the case in medicine, there is always some measure of ambiguity. “It’s uncertain—so, welcome to life,” David quips.

Early symptoms of Alzheimer’s can be so easily chalked up to things like stress and “normal aging.” Experts and laymen alike struggle on where to draw the line between everyday forgetfulness and mild-cognitive impairment, the disorder that serves as a precursor to full-blown dementia.

With this level of uncertainty infused into the situation, many with Alzheimer’s, and their families, easily slip into the welcoming arms of denial.

“We weren’t thinking dementia,” says Phyllis June. “We just thought it was because he was getting older.”

He may have been getting older, but Rick was not “old” when he was diagnosed in 2011, at age 57. He has a rare form of dementia called Early-Onset Alzheimer’s disease (EOAD). About five percent of all people with Alzheimer’s have EOAD, which can manifest in people as young as 30, and is thought to have a stronger genetic component than Alzheimer’s that occurs after age 60.

In the earliest stages, it is often those who are closest to the person with the disease who have the hardest time acknowledging the reality of what’s happening to their loved one.

Michele’s husband, John, recognized that Jean’s abilities were rapidly declining, long before Michele herself was ready to admit it. One day, when Jean was allegedly taking a shower, Jon remarked to Michele that he had concerns about his mother-in-law’s hygiene. “Are you sure she’s taking a bath?” he asked his wife. “She turns on the water, but I don’t think she gets wet.”

Michele confesses to brushing her family off, and making multiple excuses for her mother’s behavior. “Mom was sick for a long time, sicker than I understood.”

Marja also had trouble conceding to her husband’s cognitive concerns, even when their daughter Karin mentioned that David seemed to be slightly weaker each time she saw him. “I didn’t know what she was talking about. But I also didn’t ask what she was talking about,” Marja admits. “I still wasn’t connecting it with Alzheimer’s.”

The draw of denial is understandable. Alzheimer’s is a terminal illness with no cure, preventive treatment, or therapy to halt its progression.

David and Marja on diagnostic uncertainty

Only a masochist would pursue the diagnosis of such a disease.

But for those in the throes of unexplained impairment (and their families), the decision to seek the source of their cognitive woes is surprisingly straightforward. Simply put, the devil you know is the devil you can learn how to deal with.

Acknowledging the existence of Alzheimer’s bestows a certain sense of empowerment upon those living with the disease and their families. “It’s a terrible disease, but there’s a lot of good left in life,” says Michele. “I still had a lot of good years with my mother.”

For David and Rick, a diagnosis meant finally having an explanation for their increasingly common intellectual mishaps.

“It was like a weight was lifted off my shoulders,” Rick remarks.

For David, “One small part of me actually felt relief. Finally the meaning of all my symptoms made sense.”

Diagnosis and acceptance of Alzheimer’s represent but two small steps down the path of the disease—a path with no GPS, only a series of gloomy mile markers, gradually ticking off memories and abilities.

David may have been relieved by his diagnosis, but he was far from comforted. “For another part of me, an abyss had just opened. My life would be forever changed.”

Continue on to Page 2

Part Two

The View From Inside

Love in translation

It was 1962 and, for 17-year-old David Hilfiker, it was not love at first sight.

Marja, the Finnish foreign exchange student, intrigued him on an intellectual level, not an emotional one. An unquenchable feeling of curiosity compelled him to ask Marja out, just to learn more about her. From the beginning, he made sure to let the young woman know that he was not motivated by amorous feelings of any kind.

“He was just interested in me because I was the foreign exchange student, and he told that to me very plainly when he first introduced himself,” Marja says.

Her reaction the first time she saw David—a handsome man standing at the front of the classroom, talking animatedly with the instructor, a briefcase under one arm—could not have been more different. “I remember thinking, ‘He looks so sweet. I wonder what it would be like to be married to that man. Maybe we would live in the suburbs and have two children.’”

By the end of the year, David’s curiosity had given way to a deeper sense of connection, and the two officially became a couple just two weeks before Marja had to return to Finland. Seven years and countless letters later, she would obtain the answer to her love-at-first-sight-fueled hypothetical.

The two celebrated their union on June 12, 1969. They married in Minnesota, but planned the ceremony to coincide with the summer solstice, Finland’s biggest holiday.

Over the course of four decades, the couple rode the highs and lows of life together. They crafted a family of three children and multiple grandchildren, they spearheaded community outreach initiatives making use of David’s skills as a physician and Marja’s talent for teaching, and they learned how to cope with his depression, and her doubts about her abilities as a mother.

Reflecting on his relationship, David says, “I think about the 43 years we’ve spent together, making love, taking walks, doing chores, raising children—all of those things that normal people think about their wives.”

But “normal” was left by the side of the road the day that David visited Jens at Buckingham.

David is still in the early stages of Alzheimer’s, so those who aren’t around him on a daily basis don’t see the cognitive slips that creep into his day-to-day life. But friends and family notice the differences; the little ways that Alzheimer’s is re-defining what normal really means for David and his wife.

There are many times when David looks upon his wife with sadness, knowing the uncharted challenges that lie ahead—challenges that she will likely have to face alone, as he will be “out of it.” He knows she will be an amazing caregiver, but fears the heavy burden his disease will inevitably place on her shoulders.

“It’s very painful, to look at this woman that you love and to know what’s coming for her.”

Small town sweethearts

After just a few dates, Rick confesses to being completely “smitten” with his future wife.

Rick and Phyllis June had known each other for four years, but it would take a chance meeting at a local watering hole to kindle a deeper relationship between them.

Rick’s parents owned the popular tavern where Phyllis June’s mother worked. One day, when Phyllis June came in to visit her mother on the job, she and Rick struck up a conversation. Both were fresh off a recent divorce and found they had a good deal in common.

Despite his other cognitive losses, the image of his future wife on their first date remains firmly fixed in Rick’s mind. “I will never forget. She had on a red crushed velvet blazer, navy blue slacks and a white blouse. Her hair below her waist. Her green eyes. Her smile. Her smell.”

The two continued to see each other for five years before getting married. At the ceremony, their flower girl was Phyllis June’s daughter, Tia, from her previous marriage, while their ring bearer was the son of one of Rick’s closest friends.

Eleven years later, in a quaint act of kismet, Tia and the ring bearer would themselves get married.

Community has always been immensely important to Rick and Phyllis June. They’ve lived in the same area for their entire lives, serving as EMTs and volunteers at a local health clinic for individuals without insurance.

Their passion for helping their neighbors mirrors the passion they have for each other.

“We have been married for 30 years and we love each other as much today as we did the day we first met,” says Rick. “We are not only husband and wife, we are best friends.”

The couple’s loving bond has served them well as Phyllis June has had to take on more of a caregiving role for Rick. She knows her husband so well that, when he forgets the words he’s looking for, she can often anticipate his needs and finish his sentences for him.

It’s a rare relationship that has been (and will continue to be) tested as Rick’s Alzheimer’s progresses.

He is somewhere in the moderate phase of the disease. With the help of his specially-trained therapy dog named Sam, Rick can still manage on his own while Phyllis June goes to work—sometimes running squad for extra hours, to make sure they have enough money to cover Rick’s medical bills.

“Sam’s done more for me than any medication could ever do,” Rick says of the steadfast German Shepherd who officially became a Phelps in 2012. “He’s not going to cure my disease, but he has certainly changed how I live my day-to-day life.”

The two formed a special bond the moment they first laid eyes on each other.

Rick and Sam see each other for the first time. "They were like two brothers or best friends who had been apart for some years, and then were reunited," says Bob.

Alzheimer’s service dogs are selected to match the temperament and specific needs of their cognitively impaired handlers. Bob Taylor, Sam’s primary trainer and the founder of Dog Wish, a nonprofit that provides service dogs to people with psychiatric conditions, admits the animal was an “unusual candidate.” Unquestionably intelligent and very loving, Sam lacked the ideal level of maturity for a service dog.

In spite of this (or perhaps because of it), Rick and Sam share a unique connection, the depth of which surprises even Taylor himself. “I have found very few dogs that I have been that excited about. Sam is perfect for Rick and that’s all that counts.”

The clever canine offers Rick both emotional and functional support, taking some of the day-to-day caregiving weight off of Phyllis June, whose no-nonsense demeanor has served her well as her husband’s increasing impairment seeps into their daily lives. When asked how she copes with Rick’s advancing illness, she offers a simple reply: “I live it one day at a time.”

David Hilfiker

68, diagnosed with Mild Cognitive Impairment, probably Alzheimer's

View Slideshow

Read David's Blog

Marja Hilfiker

69, David's wife

Rick Phelps

59, in the middle stages of
Early-Onset Alzheimer's disease

View Slideshow

Read Rick's Blog

Phyllis June Phelps

56, Rick's wife and primary caregiver

Sam Phelps

Rick's Alzheimer's Service dog

View Slideshow

Alzheimer's Service Dogs

Mind Readers: Canines are 100 times more sensitive to electromagnetic energy than humans. They can sense subtle changes in brainwaves that forecast Alzheimer’s outbursts. If Rick becomes anxious while out walking with Sam, the dog will feel his agitation and guide him home.

Superior Noses: Dogs take in nearly 80% of outside information via scent. If Rick wanders away from home, Sam can track him for miles.

The Right Fit: Alzheimer’s dog candidates are chosen based on 2 main criteria: breed and background. Herding and hunting dogs have highly-developed thinking abilities making them easy to train. Dogs that were abandoned or raised in unloving homes are favored as they develop stronger bonds with handlers.

Highly Focused: Alzheimer’s dogs are conditioned to keep 95% of their attention on their handler and 5% on making sure their surroundings are safe.

Passive, Yet Firm: Alzheimer’s dogs provide “passive protection;” identifying when their handler is in danger and responding accordingly. If Rick tries to leave the house by himself, Sam blocks his path. If that doesn’t work, Sam will push Rick away from the door using his paws and muzzle.

Protecting the protector

Jean DelCampo’s love of fashion was only superseded by her love for her family.

“Her pride and joy was being a mom,” says her daughter, Michele. “She was always big on family values and doing the right thing.”

Jean passed those values on to her three daughters the best way she knew how—by exemplifying them.

When her daughter wanted to join the local softball team, Jean signed up to coach. Despite knowing nothing about the sport, Jean studied hard so she could help her daughter improve her skills, and make sure the young girl got the opportunity to play in games.

When her young daughters’ dreams turned to nightmares, Jean slept on the floor beside their beds to make them feel safe.

The consummate protector, Jean always strove to make her family feel safe, secure and sheltered. All her life, she battled depression, but hid her condition from her daughters until they were old enough to handle the truth.

But Jean could only shield her family from the reality of Alzheimer’s for so long.

She’s in the later stages of the disease and needs someone to help her with many daily activities including bathing, dressing and eating. Michele visits her mother often in the Alzheimer’s care unit of the skilled nursing facility where Jean has lived for several years.

As the primary caregiver for her mother before she entered the facility, the painful role-reversal that Alzheimer’s forced on their relationship has hit Michele especially hard. “My mother used to be my home, my safety. Now I’m her home, her safe place.”

Stigma, Studies and Self-Awareness

What do you think of when you hear the word, “Alzheimer’s?”

“I always thought of an old person, in a wheelchair, staring out the window,” says Michele.

“We always thought that the worst possible thing that could happen to us would be getting Alzheimer’s,” Marja admits. “That one of us would get Alzheimer’s and the other would be stuck taking care of them.”

“No one in either family had any kind of dementia. So it was just something we never talked about,” says Rick.

These three responses are characteristic of the way much of the world perceives the disease.

We fear Alzheimer’s.

As a nation, our fear of losing our minds and memories outstrips our fear of any other terminal illness, according to a 2012 survey by the Marist Institute for Public Opinion.

We fear becoming the clichéd dementia patient. The prone, vacuous entity who wouldn’t seem out of place in one of the countless post-apocalyptic zombie horror films that have frequented box offices in recent years.

We fear becoming the stereotype that has been created, not out of callousness, but out of misunderstanding.

No one on the outside knows for sure what is really going on inside the minds of men and women who are living with Alzheimer’s.

All we know is what we see—the person sitting hunched in a wheelchair, or laying prone on a hospital bed.

All we know is what we hear—the incoherent screams of someone in the throes of a hallucination only they can see, or the sinister silence of words stolen away by an unseen force.

Jean DelCampo

72, in the late stages of Alzheimer's disease

View Slideshow

Michele DeSocio

47, Jean's daughter and
primary caregiver

Read Michele's Blog

We superimpose these personas over every individual with Alzheimer’s, unintentionally reinforcing a crippling stigma that compounds the difficulties facing not only people with the disease, but their friends and family as well.

“When people think about Alzheimer’s, there’s a certain sense of helplessness and loss of hope,” according to Dr. Pillai.

Part of that hopelessness stems from the fact that medical practitioners currently lack any kind of effective treatment, preventive measure or cure for Alzheimer’s.

Medicinal therapies exist. There are currently five FDA-approved drugs on the market for individuals with Alzheimer’s: Cognex, Exelon, Aricept, Razadyne and Namenda. These prescriptions deal only with the symptoms of the disease, and fall into one of two categories: cholinesterase inhibitors (Cognex, Exelon, Aricept and Razadyne) and NMDA (n-methyl-D-aspartate receptor agonist)

Cholinesterase inhibitors work by helping the brain access and use acetylcholine, a neurotransmitter important for cognition and proper memory functioning. NMDA defends neurons against damage caused by glutamate—a chemical that is greatly increased in the brains of people with Alzheimer’s disease.

These prescriptions may work for up to a year, temporarily forestalling some of the more severe symptoms of cognitive decline. However, their effectiveness is limited.

Research into new drugs is ongoing, but despite countless headlines that hail, “New Alzheimer’s Drug Shows Promise…,” Dr. Pillai estimates that researchers are still at least a decade away from developing a prescription to combat the disease.

Each study inches closer to an eventual cure, but those who currently have the disease, and their families, must learn to cope in whatever way they can.

In an effort to educate people on Alzheimer’s effects, and hopefully dispel the stigma that clouds it, David has been blogging about his experiences with the disease since his diagnosis in September of 2012. His posts on Watching the Lights Go Out vary from deep philosophical musings on what the true definition of “self” is, to day-in-the-life accounts of living with Alzheimer’s.

Marja is not surprised by her husband’s willingness to be so candid. “It’s very much like him, he has always wanted to be very open about things.” She applauds her husband’s efforts, and mentions that going public about his Alzheimer’s has also helped David cope. “He just felt like it would be much easier for him. He wouldn’t have to feel embarrassed and guarded and try to hide it.”

Despite the positive response from the Alzheimer’s community, David acknowledges the seemingly Sisyphean nature of his undertaking.

He recalls a recent gathering he attended right after an article about his blog was featured in the Washington Post. Dozens of people came up to him to discuss the story, praising him for his courage. Yet none of them had the guts to say the dreaded A-word during their conversations with him.

David on the damage of stigma

“I knew I had Alzheimer’s; they knew I had Alzheimer’s; I knew that they knew; they knew that I knew, but the word itself remained unspoken.”

Similar to other biological banes, such as cancer and AIDS, Alzheimer’s has become an unspoken taboo. It’s as if we believe that uttering the word will somehow draw the specter of the disease to us, and then we too will be lost.

Rick is no stranger to the Alzheimer’s stigma. “The hardest thing with this disease is having people around me—friends and family, everybody like that—and trying to explain to them every day what I go through,” he says.

Frustrated and restless in the early morning hours on the day after Thanksgiving 2010, Rick took to Facebook and created Memory People—a group for people with Alzheimer’s, their family members and advocates for the disease to meet, share stories, and support one another. He also started a video blog to chronicle his journey with the disease.

Almost daily, Rick sits down in front of his computer, turns on his web cam, and riffs on his thoughts, experiences and feelings:

“The mind is a terrible thing, it’s with you 24/7. It’s not like losing your keys or forgetting a birthday. It’s not knowing your wife’s name.”

“When people ask me, ‘What do you miss the most?’ my answer is always, ‘Everything.’ Because once you have this disease, nothing is the same.”

“I’m not sick at all. I’m as healthy as a horse—I just can’t remember anything.”

Rick’s raw and honest portrayal of what it really means to live with EOAD has helped countless individuals with the disease, and their family members, learn how to handle the curve balls of life with Alzheimer’s.

Early on during her mother’s illness, Michele experienced massive amounts of aggravation and anxiety while dealing with her mother’s challenging behaviors. “I was in a state of chaos and panic all the time,” she says. Her panic stemmed from a lack of knowledge about how the disease was affecting her mother’s mind.

When it comes to Alzheimer’s, there are many unknowns.

A situation due, in part, to the fact that so few people are willing to talk openly about the disease.

According to the Centers for Disease Control (CDC), about 66 percent of dementia cases go undiagnosed in the baby boomer generation, an astounding figure that experts attribute to the power of the stigma of Alzheimer’s and other dementias.

Dr. Pillai doesn’t deny the severity of the disease, but he does question society’s approach to it. “The sense of helplessness is a little overdrawn because that’s the kind of picture—the kind of image—that the disease tends to have in the general opinion.”

Thanks to people like David and Rick, who are willing to give the outside world a glimpse of what it’s like to live with a mind affected by Alzheimer’s, we may soon be able to question the truth of our stereotypes.

Michele on the perception of Alzheimer's

If Alzheimer’s is indeed how we envision it—a soul-sucking series of losses that inevitably ends in death—then how can someone like David, a highly-intelligent rational thinker, regard the disease as a “teacher,” capable of imparting life lessons about the importance of family and learning how to let go?

It’s true that David is still in the very early stages of Alzheimer’s, and has yet to experience the profound cognitive difficulties that typically develop as the disease progresses. He can remember who his family members and friends are and is still more than capable of taking care of himself.

But for individuals who exist on the other end of the Alzheimer’s spectrum—those who can’t remember the names of their loved ones and need round-the-clock care—does the stereotype indeed hold? Is it really true that memory loss is equivalent to loss of self?

Jean is in the later phases of the disease and fits society’s outward image of what a person with Alzheimer’s “should” look like—incontinent, wheelchair-bound and nearly mute. Most days she can’t even remember Michele’s name.

But if her true self—her inner essence—is really gone, then why does her face “light up like it’s Christmas Day” when her daughter walks into the room?

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Part Three

Activities of Daily Life

A costly miscalculation

$24,000; that’s how much David’s mistake would cost the church.

He’d been in charge of calculating the Eighth Day Faith Community’s budget for years, but this time was different. Alzheimer’s had warped the formerly familiar task to the point of unrecognizability.

The spreadsheet formula was David’s brain-child, so the process should have taken him half-an-hour—a straightforward case of plug and chug. Knowing that his analytical mind was being affected by his disease, David gave himself an hour-and-a-half cushion to complete the task, just in case.

Five hours later, he was still at it, writing down individual steps on scrap paper in a futile attempt to remember simple calculations—total income equals past income plus future income.

David eventually finished the assignment and was relatively confident with the accuracy of the resulting figure.

He would later discover that he had overestimated the church’s revenue by $24,000—a sum that was nearly 15 percent of their total budget for the year.

The community was understanding of David’s mistake. He had previously informed them of his diagnosis and the possible impact it could have on his ability to participate in various roles within the church.

It would be inconvenient, but they would adjust.

David’s adjustment would be slightly different (and more difficult) than that of his peers. He would have to give up doing the books for Eighth Day—just one more entry on the ever-growing list of losses he would endure due to Alzheimer’s.

Walmart worries

Rick was in a state of panic—Phyllis June had been gone for way too long.

They had been standing in the line at the deli counter of the local Walmart when his wife said she needed to go grab the dishwasher soap she’d forgotten to pick up in another part of the store.

She told Rick that the errand would take a matter of minutes, but surely it had been much longer than that.

Had something happened to her?

Was she in trouble?

Could she be hurt?

How would he help her—he didn’t even know where she’d gone?

Rick was still rooted to the spot, debating what he should do, when Phyllis June’s familiar face finally rounded the corner of the aisle. A warm, tingly feeling of relief washed over Rick as he beheld his wife.

Once she was within talking distance, he asked if she’d gotten the soap—and what had taken her so darn long to find it.

Puzzled by his question, Phyllis June glanced down at her watch—it had been less than three minutes since she’d left Rick.

Matching accessories

A wave of gift boxes nearly knocked Michele off her feet as she opened the hall closet.

For a few seconds she stood helpless, buffeted about by dozens of small, sharp-edged cartons. When the last box finally thunked into place, the foyer resembled a scene out of a made-for-television holiday movie—Michele standing amid a haphazard pile of festive parcels, a humanoid Christmas tree, wearing a bemused smile.

She bent down and fished a slim, rectangular box from the top of the heap. Inside was a necklace, classic and elegant, the perfect pairing for that timeless staple of every woman’s closet, the “little black dress.”

The necklace wasn’t Michele’s; it was Jean’s. Indeed, all of the boxes that had rained down on Michele moments before, belonged to her mother. Ever the fashionista, Jean had developed a penchant for shopping on QVC once her cognitive impairment progressed to the point where she could no longer go out and scour the stores herself.

Despite Michele’s constant warnings and requests for her to stop, Jean refused to listen. She continued to buy things, keeping her purchases hidden from her daughter by having them delivered to the house while Michele was at work.

For Michele, it’s a memory both frustrating and fond.

Jean’s behavior eventually reached the point of obsession and she ended up doing some serious damage to her finances, which her daughter had to work hard to remedy.

But each morning, when Michele went to retrieve the clothes she’d laid out for work the night before, a perfectly matching accessory would be laying on top, courtesy of a mother who always wanted to make sure her daughter was properly outfitted.

Caring, Coping and Compassion

David on the effects of Alzheimer's

Life with Alzheimer’s is a singular experience for all involved.

The newly-diagnosed often seek information on the progression of the disease in an attempt to plot the course of their unwelcome, yet inevitable journey.

David’s experiences during the beginning phases of his cognitive impairment intrigue him as much as they frustrate him. He discusses how the disease could potentially affect him in the future with a mix of trepidation and humor. “I’d like not to be violent. Hyper-sexuality? I’m not sure, that might be okay,” he chuckles.

Gallows humor aside, he doesn’t deny the fact that his family’s future will be more difficult and uncertain because of the disease.

Alzheimer’s isn’t a paved path, or even a rut-filled road, it is more of a labyrinth of unpredictable passageways that loop and double-back on themselves. There is no steady, predictable rate of decline; rather an ongoing series of erratic alternations between periods of crystal-clear awareness and periods of extreme confusion.

Even the most accurate diagnostic and follow-up tests cannot forecast how a particular individual will experience the disease, because there is such a wide range of variability in how Alzheimer’s presents.

Rick describes days where he wakes up lucid and alert, but by the end of breakfast, he can no longer remember what he just ate. “I have good hours and I have bad hours,” he says.

Saturdays are the worst. Phyllis June often works an extended shift, leaving Rick at home by himself for hours at a time.

David Hilfiker

68, diagnosed with Mild Cognitive Impairment, probably Alzheimer's

View Slideshow

Read David's Blog

Rick Phelps

59, in the middle stages of
Early-Onset Alzheimer's disease

View Slideshow

Read Rick's Blog

Phyllis June Phelps

56, Rick's wife and primary caregiver

Michele DeSocio

47, Jean's daughter and
primary caregiver

Read Michele's Blog

Jean DelCampo

72, in the late stages of Alzheimer's disease

View Slideshow

Unable to read or watch television because he can no longer follow the storylines, Rick is left searching for something to do, something to fix, even though he knows he shouldn’t be taking on even simple projects, such as repairing a leaky faucet.

Rick’s desire to contribute to the household like he did before his diagnosis is extremely strong, and leads him to start projects he thinks will make Phyllis June’s life easier.

These endeavors inevitably take a wrong turn. One time Rick tried to mount a flat screen television on their bedroom wall, only to accidentally rip out part of the drywall in the process. Another time, he and his wife discussed possibly replacing their carpet sometime in the future. Their conversation inspired Rick to pull up the old carpet in advance (thereby saving them money). Unfortunately, he did so about four months too early, leaving the couple tiptoeing around on the bare floor for weeks.

For Rick, the most challenging aspect of Alzheimer’s is the totality of the disease; dealing with erratic swings in his cognition and awareness, while trying to come to terms with the fact that there are some things he will never get back.

One morning, Rick rolled over and looked at the alarm clock, only to realize that he could no longer tell time. “It’s like it packed its bags and just walked out.” It wasn’t just Rick’s ability to tell time that was affected—his perception of time itself was distorted. A few minutes could seem like a few hours to him.

Rick used to think that nothing could be worse than losing the internal timekeeping system he’d lived with for his entire life.

Until the day he lost the remote.

Rick searched all over the house, underneath cushions and behind furniture, but the device remained lost. Hours later, he would discover the remote where he always left it, in the magazine rack beside his favorite armchair.

The problem?

That was the first place Rick had looked when the remote went missing.

He’d stared right at the device, but his brain had been unable to recognize it. The same thing happened a few days later, when he went to the refrigerator in search of some milk. His eyes saw the carton on the shelf, but his brain refused to process the image.

Rick yearns to go to his doctor when developments like this occur, even though he knows there’s nothing that can be done.

“It’s just normal that when something like this happens, you want to get it fixed. Find a pill or some procedure that will make it possible to recognize what I am looking for again. Wanting things to be normal. That’s what we all want. Instead, we have to deal with our “new normal,” which is forever changing. I worry. I wonder—what could possibly happen next?”

Though it never truly gets easier, Phyllis June has learned to adapt to her husband’s ever-shifting state of awareness. She’s accepted that there are certain things they can no longer do together, such as vacations. “You can’t pretend it’s not there,” she says

Michele on her changing relationship with her mother

The capricious nature of her mother’s Alzheimer’s is also devastating for Michele.

Sometimes Jean seems content, singing “Sweet Caroline” with her daughters. Other times, she is conscious of what the disease has done to her, and won’t stop saying things like, “I’m so ugly. I’m so stupid.”

Communicating with Jean now requires Michele to enter her mother’s world—an ever-shifting reality defined by the pernicious whims of Alzheimer’s disease. “It’s not their fault—it’s the illness. Sometimes they’ll act in ways you don’t expect, but that’s their way of communicating. You just have to go with it and learn. If one thing doesn’t work, then you have to find out what does.”

This trial and error process is fraught with challenges, especially for people who have minimal experience with the disease. But with no cure and no possibility for prevention on the immediate horizon, stepping into a loved one’s shoes represents the best chance for maintaining a meaningful relationship with a family member who has Alzheimer’s.

Michele didn’t come to this revelation on her own; she was led there by a group of invaluable (yet unexpected) tutors. The men and women who forever altered her perception of Alzheimer’s aren’t experts in the traditional sense. They don’t don lab coats and most have never been published in a scientific journal.

This new breed of Alzheimer’s authority has gained their knowledge in what is perhaps the most effective way possible: in the trenches, living with (or caring for someone with) Alzheimer’s disease. The advent of online forums and support groups has given these beleaguered ranks unprecedented opportunities to connect and share their experiences—helping each another walk the path of Alzheimer’s with a loved one.

Walking With A Loved One

The journey of an Alzheimer's caregiver

Discovery

Family members begin to notice troubling changes in a loved one’s behavior, including memory loss, confusion, uncharacteristic outbursts, and so on. These shifts cause them to wonder if their loved one’s mind is being affected by Alzheimer’s, sparking a quest for more information.

Differentiating between Alzheimer’s and dementia:

What is the difference between Alzheimer’s and dementia? My mother has problems remembering things, but after talking for a while it always comes back.

Is [this behavior] a sign of Alzheimer’s?

My mother-in-law seems to be having more trouble than usual finding a word. What are the earliest signs of Alzheimer’s? I’m noticing in one relative of mine increased emotionality, catastrophizing, focusing on the negative and being a bit paranoid. Mom keeps telling different stories. I’m worried it might be Alzheimer’s.

Talking to a loved one about their decline:

My husband is in denial that he has a problem and gets anxious if his doctors want to send him in for more testing. He believes his doctor is talking down to him.

Diagnosis

An official Alzheimer’s diagnosis is often desired by people experiencing cognitive impairment, and their families. Unfortunately, an accurate, timely answer can be difficult to obtain due to a variety of factors, including doctors who are incapable (or unwilling) to give a definitive diagnosis, and uncooperative loved ones.

Starting the diagnostic process:

Who can diagnose Alzheimer’s? Mom has become downright hateful. My husband says it is dementia. I don't know how to determine if it is.

Confusion about available tests:

My husband’s doctor is demanding a ‘battery’ of Alzheimer’s tests. Can anyone tell me what these tests consist of and how long they take?

When a loved one puts on an act:

The person the doctors see isn’t the same one I take care of every day. The way mom interacted with the ER doc, you'd never know she had dementia. It made me want to grab him by the scrubs and tell him that just one week ago she was asking me what I was planning to make for Christmas dinner!!

Dealing with indecisive doctors:

I am confused and upset. Could mom have gotten better care initially if the doctor had been willing to give her an Alzheimer’s diagnosis? What is the real story and why do these doctors seem so ignorant?

Questions about accuracy:

Primary care doctors should not be diagnosing Alzheimer’s when they have not referred you to a neurologist for more definitive testing. Insist on seeing the correct physician.

Pros and cons of an Alzheimer’s diagnosis:

When my mother-in-law’s doctor finally came out and said she had the dreaded A-word, I felt like I had been kicked in the gut. I had known she had a memory problem for years, but now that it had a name it seemed worse somehow. My husband had symptoms for years and we couldn’t get a diagnosis because it was early-onset. It was such a relief, for both of us, to know what it was. Even though we couldn’t cure it, there were things we could do. We could openly talk about it between ourselves and others. It has really helped him accept his limitations, because he knows it is a disease and it is not his fault.

Disease Management

The disturbing behavior that often accompanies a loved one’s descent into Alzheimer’s has family caregivers actively searching for methods (medicinal and natural) to manage not only their loved one’s disease, but their own complex collection of emotions as well.

Dealing with an array of challenging behaviors:

Mom insists her room is infested with bugs. Dad keeps yelling, ‘No, no, no!’ and hitting me for no reason. My husband with dementia won’t stop telling lies about me. Mom stares at one newspaper page for 7-8 hours a day!

Medications garner mixed reviews:

It took some time, but my father is doing better now that he has a prescription to manage his anxiety. I would rather have mom medicated than experiencing fear. But I admit, it is difficult to watch her like this—she’s just not the same. We as caregivers need to be proactive and weigh the pros and cons of medicine because, believe it or not, no one cares as much as you do about the fine line of these details.

Complex emotions of an Alzheimer’s caregiver:

I just feel so lonely, I don’t know how to help myself, or how to move forward. My husband is ‘gone,’ but he is still very much alive. I just cannot do this anymore. I left. I just packed up and ran away. I feel so awful when I hear about ‘the end’ of Alzheimer’s and how terrible it is. I feel like my heart is going to break in two.

Continue on to Page 4

Walking With A Loved One

The journey of an Alzheimer's caregiver

Discovery

Family members begin to notice troubling changes in a loved one’s behavior, including memory loss, confusion, uncharacteristic outbursts, and so on. These shifts cause them to wonder if their loved one’s mind is being affected by Alzheimer’s, sparking a quest for more information.

Differentiating between Alzheimer’s and dementia:

What is the difference between Alzheimer’s and dementia? My mother has problems remembering things, but after talking for a while it always comes back.

Is [this behavior] a sign of Alzheimer’s?

My mother-in-law seems to be having more trouble than usual finding a word. What are the earliest signs of Alzheimer’s? I’m noticing in one relative of mine increased emotionality, catastrophizing, focusing on the negative and being a bit paranoid. Mom keeps telling different stories. I’m worried it might be Alzheimer’s.

Talking to a loved one about their decline:

My husband is in denial that he has a problem and gets anxious if his doctors want to send him in for more testing. He believes his doctor is talking down to him.

Diagnosis

An official Alzheimer’s diagnosis is often desired by people experiencing cognitive impairment, and their families. Unfortunately, an accurate, timely answer can be difficult to obtain due to a variety of factors, including doctors who are incapable (or unwilling) to give a definitive diagnosis, and uncooperative loved ones.

Starting the diagnostic process:

Who can diagnose Alzheimer’s? Mom has become downright hateful. My husband says it is dementia. I don't know how to determine if it is.

Confusion about available tests:

My husband’s doctor is demanding a ‘battery’ of Alzheimer’s tests. Can anyone tell me what these tests consist of and how long they take?

When a loved one puts on an act:

The person the doctors see isn’t the same one I take care of every day. The way mom interacted with the ER doc, you'd never know she had dementia. It made me want to grab him by the scrubs and tell him that just one week ago she was asking me what I was planning to make for Christmas dinner!!

Dealing with indecisive doctors:

I am confused and upset. Could mom have gotten better care initially if the doctor had been willing to give her an Alzheimer’s diagnosis? What is the real story and why do these doctors seem so ignorant?

Questions about accuracy:

Primary care doctors should not be diagnosing Alzheimer’s when they have not referred you to a neurologist for more definitive testing. Insist on seeing the correct physician.

Pros and cons of an Alzheimer’s diagnosis:

When my mother-in-law’s doctor finally came out and said she had the dreaded A-word, I felt like I had been kicked in the gut. I had known she had a memory problem for years, but now that it had a name it seemed worse somehow. My husband had symptoms for years and we couldn’t get a diagnosis because it was early-onset. It was such a relief, for both of us, to know what it was. Even though we couldn’t cure it, there were things we could do. We could openly talk about it between ourselves and others. It has really helped him accept his limitations, because he knows it is a disease and it is not his fault.

Disease Management

The disturbing behavior that often accompanies a loved one’s descent into Alzheimer’s has family caregivers actively searching for methods (medicinal and natural) to manage not only their loved one’s disease, but their own complex collection of emotions as well.

Dealing with an array of challenging behaviors:

Mom insists her room is infested with bugs. Dad keeps yelling, ‘No, no, no!’ and hitting me for no reason. My husband with dementia won’t stop telling lies about me. Mom stares at one newspaper page for 7-8 hours a day!

Medications garner mixed reviews:

It took some time, but my father is doing better now that he has a prescription to manage his anxiety. I would rather have mom medicated than experiencing fear. But I admit, it is difficult to watch her like this—she’s just not the same. We as caregivers need to be proactive and weigh the pros and cons of medicine because, believe it or not, no one cares as much as you do about the fine line of these details.

Complex emotions of an Alzheimer’s caregiver:

I just feel so lonely, I don’t know how to help myself, or how to move forward. My husband is ‘gone,’ but he is still very much alive. I just cannot do this anymore. I left. I just packed up and ran away. I feel so awful when I hear about ‘the end’ of Alzheimer’s and how terrible it is. I feel like my heart is going to break in two.

Continue on to Page 4

Part Four

Fading Minds, Full Hearts

Given the scientific facts of Alzheimer’s—an illness marked by profound losses that has no true treatment or cure—it’s easy to succumb to sensationalized images of an unstoppable, worldwide dementia doom.

But hope endures, creeping along the edges of the global consciousness, in the form of individual advocates who are changing the way we see (and care for) people who have Alzheimer’s. It’s a gradually growing guerilla force, battling the disease on multiple fronts.

Advocating for the everyman

Rick and Phyllis June have gone on countless speaking engagements, appearing before lawmakers and grade school children alike.

Like many Alzheimer’s advocates, they are appalled at the lack of funding for Alzheimer’s care and research in the U.S.

The numbers tell an enlightening tale: in the past decade, the number of Alzheimer’s deaths has increased by 68 percent, while the number of deaths from other major diseases (i.e. cancer, heart disease, and stroke) has declined.

Meanwhile, even with the inception of the much-lauded National Alzheimer’s Project Act (NAPA), funding for Alzheimer’s research (just over $500 million in FY 2012) remains a woeful fraction of that allotted for cancer ($5.6 billion) and heart disease ($1.2 billion), according to figures from the National Institutes of Health (NIH).

“It’s not a Republican thing, or a Democrat thing. Until we get more money, we’re just spinnin’,” says Rick.

Most of the time, Rick and other Alzheimer’s advocates end up being shunted to the side, speaking to aides rather than the lawmakers themselves. But meetings with Congressmen are not where Rick and Phyllis June find their greatest fulfillment.

Speaking to young children about Alzheimer’s is the couple’s preferred form of outreach. For obvious reasons, some of the more unpleasant details of the disease have to be omitted when talking to kids, but Rick derives great joy from giving children a space to ask questions and receive information about Alzheimer’s.

It’s a never-ending process, one that is sometimes interrupted by Rick’s disease, but the pair is firm in their resolve to educate others on what it’s like for real people (as opposed to well-known celebrities) who are living with Alzheimer’s. Phyllis June says, “We’ve made a dent, and we’re going to continue to make a dent.”

Inspired by unfortunate circumstances and fueled by passion for their mission, the pair is determined to make the most of the time and opportunities they are given.

“Today could be the best day I ever have. This disease is going to take control sooner or later,” says Rick

Phyllis June flashes him a knowing smile, “For you, it’s going to be later—much later.”

Exposing the philosophy in Alzheimer’s

David is a self-proclaimed exhibitionist. He enjoys sharing his inner life with others—even strangers.

He seldom shies away from an opportunity to share his experiences with people, even if he risks portraying himself in a less-than-flattering light.

As a young doctor, David accidentally aborted a live, wanted fetus because he thought the child was already dead.

David on "coming out" with Alzheimer's

Instead of hiding his grave mistake, he went public with it. After seeking advice and counsel from colleagues—who shrugged off his queries with the frustrating one-liner, “mistakes happen”—David decided to write and publish an article on his experiences in a prestigious medical journal, earning him a reputation among his peers for unflinching openness.

Making the jump from talking about life-altering medical mistakes (an extremely taboo topic) to sharing his insights about living with Alzheimer’s was not a difficult one for David to make.

His blog—which has attracted the attention of major news outlets and is featured on prominent aging care websites—is continuing to attract new followers with his poignant posts.

His journey with Alzheimer’s is also being chronicled by award-winning documentary filmmaker, Larry Engel.

For his part, David hopes his openness will inspire others to seek out more meaningful connections with those who have the disease, “What’s happened with my telling people about my Alzheimer’s has been an incredible deepening of relationships.”

Rick Phelps

59, in the middle stages of
Early-Onset Alzheimer's disease

View Slideshow

Read Rick's Blog

Phyllis June Phelps

56, Rick's wife and primary caregiver

David Hilfiker

68, diagnosed with Mild Cognitive Impairment, probably Alzheimer's

View Slideshow

Read David's Blog

Marja on maintaining her love

He often refers to his future experiences with Alzheimer’s as an adventure, even though he knows his journey won’t end with a triumphant outcome. “Each of us with this disease must explore it for the first time; each of us faces a unique adventure.”

Marja opts not to spend time on predictions. She simply hopes that she’ll be able to hold on to her bond with her husband as his disease progresses.

A hope unfaded

Michele almost missed out on being able to maintain a meaningful connection with her mother after Jean’s diagnosis.

Interacting with people with Alzheimer’s disease and their caregivers on Memory People gave her knowledge and a sense of perspective that she was in desperate need of. “It changed everything. I have a relationship with my mother that I would never have had otherwise.” She has rediscovered the feeling of hope—a lifeline for the countless men and women who awaken every morning to face an uncharted course, a blank slate, a mind that has faded.

But the most important insight Michele’s obtained is that—despite what so many people unfortunately believe—Alzheimer’s is not all-powerful.

“There is one thing this disease cannot take away, and that is love. Love is not a memory—it’s a feeling that resides in your heart and soul.”

Previous Part

Cause for Concern

The View from Inside

Activities of Daily Life

Fading Minds, Full Hearts

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The View from Inside

Activities of Daily Life

Fading Minds, Full Hearts

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