by Nigar Fatali
March to Oblivion: Personal Stories of Alzheimer's Disease
Alzheimer's Disease: Facts and Figures
In 2012 Alzheimer’s disease was the sixth leading cause of death in America and the only one out of the top few that increased dramatically in the last decade.(1) With millions of people already affected, the number of victims could triple in the next few decades.
Aging baby boomers are changing America’s demographics. The United Nations Population Division projects that by 2050, people 65 and older will comprise 21.6 percent of the population, up from the current 13 percent.(2) Among the major health issues facing the aging boomers is Alzheimer’s disease and other forms of dementia.
Alzheimer’s disease is a type of dementia that affects hippocampus—the part of the brain in charge of learning and forming new memories. The disease introduces beta-amyloid proteins that block brain cells. According to Alzheimer’s Association, as the most common type of dementia, Alzheimer’s disease accounts for 60 to 80 percent of all cases. It is irreversible and progressive.(3)
Alzheimer’s Association’s annual report estimates 5.2 million Alzheimer’s patients in 2013 in America, and if the cure is not found, the number might grow as high as 16 million by 2050. Most of current patients are 65 or older. About 200,000 are below the retirement age and have early onset Alzheimer’s, which is mainly results from a genetic mutation. Two thirds of all Alzheimer’s patients are women, which has no scientific explanation other than the fact that on average, women live longer than men.(4)
Costs and caregivers
Alzheimer’s disease comes with a hefty price tag. The Alzheimer’s Association estimates that in 2013, the disease will cost the nation $203 billion(4) — $107 billion from Medicare, $35 billion from Medicaid, $34 billion in out-of-pocket expenses and $27 billion in other costs.(5) By 2050 the annual cost of Alzheimer’s disease in the United States is expected to reach $1.2 trillion. If a cure is not found, the financial burden will cripple more families.
According to Alzheimer’s Association, more than 15 million individuals were caring for Alzheimer’s patients in 2012. These caregivers provided an estimated 17.5 billion hours of unpaid care, valued at more than $216 billion. Many caregivers had to drop completely or partly out of the workforce during the period of care.(4)Caregivers might also experience problems with their own physical and psychological health. A 2009 NAC/AARP survey indicated that 61 percent of family caregivers rated their stress levels as high or very high.(6)
Physicians recognize three main stages of Alzheimer’s disease: mild, moderate and severe. The mild stage is mostly defined by regular and increasing forgetfulness, difficulty forming new memories and possible changes in mood and personality. In the moderate stage, speech and cognitive ability worsens, and patients often find themselves disoriented and confused. Patients in advanced stages do not recognize their loved ones, and require assistance in performing basic daily activities.
The technology for diagnosing Alzheimer’s has improved in the last few years. Even though the definitive diagnosis of Alzheimer’s still requires an autopsy, identifying the disease in a living person is now more precise than ever.
Among the most significant breakthroughs in diagnostics is florbetapir (trade name Amyvid), a radioactive drug approved by the U.S. Food and Drug Administration in 2012. The use of Amyvid with Positron Emission Tomography imaging (PET scan) makes it possible to estimate the density of beta-amyloid plaque in the brain and spot Alzheimer’s disease much sooner. The imaging itself does not provide a diagnosis. It is a supplemental test to confirm the diagnosis for patients who exhibit other symptoms of Alzheimer’s disease. Medicare and most insurance companies do not yet cover Amyvid imaging. At the University of Arizona Medical Center (UAMC) in Tucson, the PET scan costs about $3,000.
Dr. Phillip H. Kuo, an associate professor of radiology, medicine and biomedical engineering at UAMC, was one of the first radiologists in the country (and the first in Arizona) trained to read the scans.
According to Kuo, this technology is a major step toward finding a cure for Alzheimer’s. He doesn’t, however, recommend giving the test routinely. Knowing you will develop a disease that does not yet have a cure can cause psychological trauma, Kuo said. “If you want to know the answer, first make sure you know what to do with it.”
Treatment and research
No existing treatment can slow down or stop the progression of Alzheimer’s disease, but it can improve basic functions. FDA approved medications such as Aricept, Exelon, Razadyne, Cognex and Namenda improve patients’ memory, ability to think and solve problems.(9) Therapeutic treatments help reduce symptoms like anger, frustration and depression. Therapies include distracting activities such as gardening, playing music, walking and interacting with pets.(10) The efficacy of therapy is individual to each patient.
Experts hope that, Alzheimer’s treatments will target the beta-amyloid plaques. “Within the last five years or so the field has shifted from symptomatic treatment to actually disease modifying agents (medicine),” said Dr. Geoffrey L. Ahern,professor of neurology, psychology, and psychiatry at the Behavioral Neuroscience and Alzheimer’s Clinic at UAMC. According to Ahern, the infamous Lilly drug studies that reportedly failed last year, actually raised the biggest hopes. The two studies focused on developing antibodies in patients in later stages of Alzheimer’s disease. Once formed or injected in the person’s body the antibodies would go after the plaques.(11) Even though the research was cancelled due to the lack of cognitive change in patients, Ahern believes that it’s not the end: “The great hope would be that we can go back to that and revisit the results, perhaps by treating people earlier.”
Arizona clinics are among many in the nation that are conducting studies. Last year the Banner Alzheimer’s Institute in Phoenix launched a $100 million clinical trial on early onset Alzheimer’s. The research is based on the premise that Alzheimer’s can be prevented if caught early. About 300 members of an extended family in Colombia who share a genetic mutation agreed to participate in the trial.
UAMC plans to launch several studies in the following months as well. The new research will employ agents designed to prevent further deposition of amyloid plaque and perhaps also help dissolve plaque that has formed.
“The agents probably won’t lead to an improvement in the patients’ function, but may stabilize it and prevent further progression,” said Dr. Ahern.
In May, 2011, Kathleen Sibelius, the secretary of Health and Human Services, introduced the National Alzheimer’s Project Act (NAPA). This plan proposes to prevent and treat the disease by 2025. The budget includes funding for about a hundred clinical trials across the country, with $80 million for additional research, $4.2 million for improving public awareness of the disease, $4 million for provider education programs, $10.5 million for caregiver support and $1.3 million for improved data collection.(12)
Kelly Raach, director of the Alzheimer’s Association in Tucson, is hopeful about the national plan. “We’re looking at an epidemic where we’re not going to have enough beds for people who will need long-term care if we don’t find a cure for this disease,” Raach said.
The BRAIN (Brain Research through Advanced Innovative Neurotechnologies) Initiative introduced by President Obama earlier this month is expected to affect Alzheimer’s research significantly too. The initiative will focus on neurological diseases, such as Alzheimer’s disease, Parkinson’s disease and other brain conditions. The plan, similar to the human genome project circa 1990, will pour millions of dollars in research of the fundamentals of an active brain.(13)
According to Kuo, the BRAIN initiative is a step in the right direction. “It’s an interesting analogy to when John F. Kennedy made it a national priority to land a man on the moon, or when we made it a top national priority to find a control for AIDS,” Kuo said. “When we’ve put our minds to it as a country, we’ve succeeded each time. Hopefully, we’ll succeed this time.”
The following are the stories of the Jaffes, the Carreras, and the Minariks (Barils) - three families, affected by Alzheimer's disease. The feature stories were written after several weeks of reporting on day-to-day activities of the family members, both the patients and their caregivers in Tucson, Ariz.
Gladys and Roland
“I absolutely adore my wife,” Roland Carrera, 71, said.
Ever since the day he saw Gladys sitting in her sister’s car at his aunt’s gas station in Mexico almost 55 years ago, he has been head in the clouds in love with her. They raised four children, and enjoyed their 11 grandchildren and four great-grandchildren. Friends and family used to fill their house for important events with delicious food that Gladys made. She has been his friend, drinking buddy, and confidant, and he has not been able to have a conversation with her in months.
Gladys Carrera, 72, was diagnosed with Alzheimer’s disease in 2007. She had been showing symptoms for almost a year before Roland decided to take her to see a doctor. As is common for many elderly Alzheimer’s patients, Gladys has an additional condition. In her case it is type 2 diabetes.(1) Some studies suggest a connection between the two diseases. Diabetes has a negative impact on blood vessels and is a major risk factor for vascular dementia, the second most common type of dementia after Alzheimer’s.
Roland is not known for being mellow, or sensitive. He has always been the tough guy for his children, friends and family. He is straightforward and at times even bitter. But when it comes to Gladys he melts. Almost twice her height, he brings her wherever he goes.
He takes her by the hand, even if they are only moving inside the house. He does not leave her alone, except when he sits her in front of the TV to watch a Mexican soap opera. This is the only thing that still catches her attention.
Everything in Roland’s world is now about Gladys.
He wakes up early, gives her a shower, changes her diaper, and dresses her up. Nothing fancy, but the colors have to match.
He brushes her hair and puts it up in a ponytail. He wishes he could make it in a braid, but he still has not learned.
He uses expensive oil for her face and body lotion for her skin.
Then he prepares her breakfast – a bowl of oatmeal with berries, and orange juice. She has to eat first. When she is done, he will fix breakfast for himself.
There are daily insulin shots, medication every night and blood sugar checks every week. “I don’t have a problem doing anything I have to do,” he said.
Roland tries to take Gladys out of the house as much as he can. But when he does, he has to stick with the schedule. A planner scheduler for an electric company in the past, Roland applies the skills in caregiving, too: Gladys can only drink water every three hours. A little later he will take her to the bathroom.
They always enjoyed get-togethers and going out. Their house would often be filled with people, sometimes to the point where the guests could only stand. Family and friends would come over for special dates, or for no reason at all. Children would play in the backyard, grown-ups would sip drinks and try to stay away from Roland, because he was determined to take everyone down in discussions. And Gladys would cook.
She was an amazing cook. Everything she made was outstanding. Her chile rellenos and enchilada casseroles, Spanish rice with shrimp and vegetables, banana smoothies and banana pancakes are some of the things her children and grandchildren remember. “She used to make cakes. She took a cake decorating class and ever since we didn’t buy a cake,” her daughter Leonor T. Deutsch, 46, said. She tried to learn to cook like her mom, but the rice still does not taste the same. Her brother Roland Carrera Jr., 44, rarely eats Mexican food now. He gets disappointed with the meals not tasting anything like his mom’s.
Now, Roland and Gladys’ get-togethers are not as intense. They will often go on trips, whether it is down to Mexico to visit relatives, or up to Phoenix to see their children and stay at Leonor’s house. Occasionally, they will go to her old-time favorite Mimi’s Café for breakfast, or somewhere else for a dinner. Roland will order Gladys something she used to like – mostly salads.
Gladys will sit next to him, hold his hand and look at people intently, as if trying to recognize them, or to understand the conversation. She barely speaks, mostly mumbles and uses random words in Spanish. She stopped using English a while ago.
Her children grew up fluent in both languages and are still able to understand her. But like many third generation Hispanics in the U.S., her grandchildren, except for Leonor’s son Gary Hill, 24, do not speak Spanish. He was the only one among his cousins to be able to speak to his grandmother until she could no longer talk.
“The last time I saw Nana normal, I didn’t know. I didn’t try to appreciate time with her,” said Gary, who was studying education and minoring in Spanish at the University of Texas in Tyler when Gladys was diagnosed. He had no idea, that when he saw Gladys in Minnesota six years ago it was the last time he would see her healthy. When he came back, she did not recognize him, or his cousins anymore.
Leonor remembers the time she realized something was off with her mother. It was five years ago, when Leonor and her family lived in Minnesota. She just had her third son, Cameron, and Roland sent Gladys over for a two-week visit. But something was not right. Gladys seemed disoriented and confused. She did not know where she was and did not recognize her daughter. Always affectionate to children, she would not even hold the baby. She kept bringing up memories of her youth.
When she returned to Arizona, Roland picked her up at the airport and gave Leonor a call. After he hung up, Gladys started a fight, calling him a cheater, because “some girl,” meaning Leonor, was calling him dad. He knew then it was time to take her to a doctor.
Ever since the diagnosis, Leonor has been trying to help her father as much as she can. She moved her family to Phoenix to be closer. Together with Roland, she helped Gladys through the violent stage. She calmed her down when Gladys had an episode in her house, calling Leonor a witch and trying to attack her. Roland put away all the knives in their house after he woke up one night to find his wife standing over his head with a rock in one hand and a knife in the other.
Since Roland is retired and healthy enough to take care of Gladys by himself, her disease did not become a financial burden. Yes, there are out-of-pocket costs, but Roland is convinced she would be spending the same amount of money on clothes and make-up, and other things, if she was healthy. His retirement and Social Security benefits cover most of the expenses.
Even though Gladys cannot communicate with words, Roland believes she understands everything. She still shows emotions.
Sometimes she will laugh, not necessarily when there is something to laugh about. There are moments that she gets right, like the time when Roland told the story of how they met and got married. She turned to him, grabbed his hand and laughed almost hysterically.
Other times, she suddenly starts weeping. Roland thinks it might be one of the sharp moments, when she understands what is happening to her. It is heartbreaking for Roland.
Then there is what Roland calls the “Lady in the Mirror” situation. Sometimes, Gladys sits in front of the mirror, talking to her reflection, and have what looks like arguments and heated discussions. Of course, it is mostly mumbling.
At times, she has particularly sharp moments. It happened last when their son Roland Jr. came over for a dinner with his daughters and grandchildren. Gladys spent the day around the children, occasionally playing with them, but mostly just sitting in her chair in the backyard watching. As the family gathered in the kitchen to have steaks with refried pinto beans, Roland sat Gladys at the table to feed her first. When Roland Jr. approached Gladys holding his grandchild, she turned to him and asked in Spanish “Is this one yours?” It was the first time she recognized her son in three years.
For Roland Jr. his mother was the one person there for him throughout his life. Whether it was his divorce, problems with law, or fallout with his children, Gladys was the one to set him straight. He feels a tremendous guilt for the stress his actions caused her, which might have worsened her condition.
Just like his siblings, he is afraid of getting Alzheimer’s later in his life too. “I’m scared. If I have it, I won’t have anybody like my dad to take care of me,” Roland Jr. said.
Caregiving is not easy on Roland. In fact it is a major stress. Studies show that dementia caregivers are usually under more stress than any others and 30 to 40 percent of them go through depression and emotional stress.(2) Nationwide there are 15 million people and in Arizona 303,000 people, who provide unpaid care to Alzheimer’s and other dementia patients.(3)
When she was first diagnosed, Roland tried to go to a support group. But Gladys, who was defensive and in denial about her diagnosis refused to stay in the next room and wait. She claimed she was not crazy and did not want to be treated like she was. Roland did not want to upset her and gave up on support groups. Instead he started reading. The book that helped him the most was “The 36-hour Day” by Nancy L. Mace and Peter V. Rabins. He read about all the ways to cope with caregiving stress, staying patient and managing Gladys’ needs.
Once Roland was listening to the radio in his car on the way home. The show was about posttraumatic stress disorder (PTSD) among veterans and how it starts. Some of the callers said that their stress occurred when their friends, or buddies got shot next to them. The appreciation for not being shot, turns into a life-long guilt. These words perfectly describe what Roland feels. He knows that when the time comes and Gladys passes, he will feel this exact kind of guilt.
But this guilt is nothing in comparison with the one Roland would have if he put Gladys in a home. Even though everyone keeps telling him to do so, he cannot imagine anyone taking care of her the way he does. He cannot bear the idea she might be somewhere else, neglected and feeling isolated.
Studies show that for some caregivers, especially husbands, admitting their loved ones to a nursing facility can contribute to their stress, instead of relieving.(4) Roland has watched and re-watched the movie Notebook, a love story where one spouse develops Alzheimer’s. Even though Roland is aware that it is based on a feature plot, he finds it very realistic, unlike many other movies about the disease. He watched an HBO series on Alzheimer’s and read many guides. He follows updates on Alzheimer’s and turns to the Internet for more information. He made a list of things he should remember: discipline, self-control, focus, compassion and compassion.
But there is one task that Roland does not have to remind himself about and it is loving Gladys in sickness and in health.
Edith and Lynne
Ring. Ring. Ring.
It is evening and Lynne Jaffe, 66, knows why her phone rings persistently. She screens the calls, letting the machine take it. She knows exactly what the message is going to be.
Ring. Ring. Ring. Beep.
It is her mother, Edith Jaffe, 91, calling to complain. Edith leaves a message after a message, complaining about food not being fresh and people around her not intelligent enough, and how she would love to invite Lynne and her husband Brian for a decent dinner. Messages later, Lynne calls the assisted living facility where her mom resides and asks the staff to distract her. Sometimes, she will call Edith back 15-20 minutes later and distract her with the first sentence. Nowadays, it is one of the few ways for her to have a decent conversation with her mother.
Edith, a retired English teacher and Arizona resident was diagnosed with Alzheimer’s disease in 2007. She is one of America’s 5.2 million Alzheimer’s patients. Roughly 100,000 of them are Arizona residents.(1)
The diagnosis came as a surprise to her five children. Even though she was losing memory, they did not expect it to be Alzheimer’s disease. After retirement, she was healthy, sharp and in control.
Active in a garden club, she did yoga and walked at least a mile every day until 2005.
She was very well educated. Majored in English, she was an editor for the Brooklyn College newspaper as a student. She worked as an English teacher. She always loved reading. Some scholars believe that more years of education build what they call a “cognitive reserve,” which improves connection between neurons and helps the brain compensate for the changes.(2) Other studies suggest that education has no relevance to the disease.(3)
When Edith began showing symptoms, her children thought it was stress from their father Bernard Jaffe’s death.
Bernard and Edith sold their house in New York and moved to Tucson 26 years ago, after physicians diagnosed him with chronic obstructive pulmonary disease and he could not endure cold Northeast winters anymore.
Settling down in Green Valley, the Jaffes quickly found their way to the hearts of their neighbors and community members. Devoted Democrats, they once marched on Washington against the Vietnam War, and continued being politically active. Bernard served as a treasurer for the local Democratic Party. They enjoyed social events, concerts and foreign films.
His death devastated Edith. She could not concentrate and became forgetful and confused. She got a little better at some point, but her memory continued to decline. Her children convinced her to move to an independent living facility and after a while took her to see neurologist Dr. Geoffrey L. Ahern at the University of Arizona Medical Center. First, he diagnosed her with Mild Cognitive Impairment (MCI) and two years later said it was Alzheimer’s disease.
“I remember questioning him,” Lynne recalls: “I asked if he was really sure, because I did not want to hear that. I knew she was losing her memory, I just did not want to hear Alzheimer's.”
Lynne, the only one of her children to live in Tucson, became Edith’s primary caregiver and a healthcare proxy, sharing the latter responsibility with her brother Jody. Her sister Judith, who lives on the East Coast, takes care of the financial aspect. The other two siblings visit as much as they can.
Judith, 67, visits Tucson at least three times a year. When her father died she spent a long time in Arizona making arrangements through Social Security and Medicare. Going through her father’s financial papers, she discovered stocks and investments, and soon consolidated investments into mutual funds. A stockbroker in the past, she quickly took care of her mother’s financial situation. Money generated from investments and savings cover Edith’s cost of living and medical bills.
The Jaffes placed her in an independent living home in Green Valley in 2006, spending most of what she received for selling the house. As Edith's memory worsened, Lynne moved her to a memory care facility. In the course of two years, Edith moved six times from one place to another. The costs ranged from $5,500 a month to $7,000. Within five and a half years since Edith moved out of her house, the Jaffes have spent about $200,000 on the facilities and their services only. Additional costs such as physician fees add to the bill.
“When she gets to the point where it does not matter anymore, we might move her to a less expensive place. Right now we try to keep things that are enjoyable for her,” Lynne said.
Considered one of the most expensive diseases by the National Institute on Aging, Alzheimer’s surpassed cancer and heart disease in costs. It can hit family budgets hard. According to Alzheimer’s Association, the average cost for basic services at an assisted living facility is $3,550 per month, or $42,600 per year. Nationally payments for health care, long-term care and hospice for Alzheimer’s will reportedly reach $203 billion in 2012. This number is expected to reach $1.2 trillion by mid-century.(1)
Edith’s neurologist Dr. Geoffrey L. Ahern assesses her stage as moderate. She has no short-term memory, and recalls little of her personal history. She remembers being married, but does not remember Bernard, unless she reads his letters that she keeps in her desk. When she does, she cries and says how good of a man he was. She barely recognizes her grandchildren, but she knows that they are related to her somehow. She keeps having the same conversations over and over again and has difficulty following others.
Edith lives in a moment, in the reality that her brain creates. Until recently, she resisted taking her medications, because she believed she had no need for them. She refuses to do basic physical exercise and considers many activities offered at her facility too simple for her. Her perception of food has changed, and she gets very upset with the most of the dishes she eats, except for raw fresh vegetables and fruits, and sesame bagels with lox and cheese. She enjoys the cooking of Brian, Lynne’s husband, and never complains about it.
“She calls me to complain at this point six to eight times a day, sometimes more, a lot of times at night. And often for the same reason: because she does not remember that we talked,” says Lynne.
Her mom’s disease is another part-time job. She handles her bills, takes her out and drives her to the doctor’s appointments. Every Monday she goes to visit her. For Lynne it has been particularly difficult. Working at the University of Arizona as a part-time consultant, she supports her husband Brian, whose company recently went out of business. Her son David, 26, is making his way through school up in Flagstaff. He works as a teacher in a charter school and still requires Lynne’s financial support.
Lynne is afraid of getting Alzheimer’s disease herself. She knows she has 50 percent chance of getting the disease, it is always in the back of her mind. Whenever she forgets a task, spaces out on a name, or gets easily distracted, the fear lifts its head. When she heard of the UAMC’s new amyvid diagnostics technology that can spot the disease in early stages, she called Judy and asked if they should take it. Judy asked about the costs. Lynne said as it was $3,000, and almost no insurance covered it yet.
“Forget about it,” Judy replied.
Recently, Lynne decided to start attending a support group twice a month. After three meetings she was surprised how much it has helped. Sharing her story with people who go through the same and even worse makes her appreciate her situation better. Besides, it is a great outlet for the feelings she cannot share with anyone else. She is learning how to manage Alzheimer’s patients. She knows not to argue, to redirect her mother’s attention, and to develop a thick skin to protect her from actions and words that might be hurtful.
At 91, Edith does not look a day older than 70. Elegant in her manners and talk, she still holds a conversation, and makes clever jokes.
She loves playing Scrabble, which is the Jaffes' family tradition, and she often wins. Proud of her score she will joke: “I am a retired teacher. I can spell anything. A-N-Y-T-H-I-N-G.”
Her room, in a Southwest-styled memory care facility is filled with books and photographs of her loved ones. Here is Bernard, young and handsome, sitting next to happy and beautiful her, holding baby Judy in his arms. Here they are soon after retirement sitting at the table with a couple of close friends, both of whom passed away before Bernard. Here is the whole family, all seven together, smiling at the camera more than five decades ago. Edith often does not recognize people in most of these photos, although she knows that they are somehow related to her.
She loves spending time with Lynne, talking about past memories, most of which Lynne has to remind her about, and discussing family members. They make jokes and share laughs. She enjoys having violinist Joshua Bell’s music on the background.
Her grandson David visits whenever he is in Tucson. As a child, he used to spend more time with his grandparents than his cousins, and has vivid memories of this happy time. She would sing, treat him with fresh orange soda, ice cream and chocolate and take him for his favorite regular walks in the desert.
Nowadays, they mostly spend time in the facility. Sometimes Lynne and David take Edith out for a lunch, or for ice cream. She complains about most brands being too sweet, but she still enjoys Baskin Robbins.
When Edith lived in a previous facility, not a very good one, Lynne hired Denise Williams, 64, their long-time family friend, to spend time with her mother. Denise visited Edith three times a week. The two would go for walks, play games and talk. She used every chance to make Edith laugh. She thought it was important to keep Edith from feeling isolated.
Denise admires how the Jaffes deal with the situation. Lynne takes the most pressure, but Brian and David seem to be as supportive as possible.
“When they just moved her to the new facility they asked me to spend a day with her. We ran out of things to do and I took her to Lynne and Brian’s,” Denise recalls. “When we walked in, Edith looked around and said: ‘Gosh this place seems so familiar to me!’”
“The saddest thing is that my mother was this very intelligent vibrant person, very active in politics and her school, very involved with children and grandchildren,” says Lynne. “It seems terribly unfair. There should be some reward for having lived such a good life.”
Cheryl, Steve and Beth
Cheryl Baril, 53, is a pleasure of a person. Positive and good-hearted, caring mother and loving wife, she is kind to strangers, generous with hugs and affectionate to babies. A master of small talk, Cheryl wants to know where you come from, what you do, and what you are like. It does not seem like anything could be wrong with her, but it is. By the end of the day she will not remember any of it.
Cheryl is in the mild stage of early onset Alzheimer's disease, a predominantly genetic condition that affects about 200,000 out of 5.2 million Alzheimer’s patients in America.(1) Unlike the typical form of the disease, early onset is caused by mutations in genes. The probability of getting it, if one of the parents was affected, is 50 percent.
For Cheryl’s family the genetic lottery played to its full strength. Both of her siblings are diagnosed with the disease. Her brother, Steve Minarik, 48, is in the moderate stage, and her sister Elizabeth (Beth) Minarik, 50, quickly sled into severe.
They get the gene from their father, Smith Minarik, who passed away from Alzheimer’s at the age 51 in 1988. Smith got it from his mother, who also died at 51 from non-sedated shock therapy. Both of them started showing symptoms in their early 40s.
Marrying Smith only one week before she turned 20, Mary Kay Bush never thought she would lose him to the disease. Nor would she have ever imagined watching all three of her children slowly lose this battle, too.
When physicians diagnosed Smith, it was a relief to know what it was. The entire time he was showing symptoms, Mary Kay thought he was depressed because she was doing something wrong. They went to counseling. At one point, he was even diagnosed with schizophrenia. Thanks to Smith’s easy-going nature they were able to enjoy outings long after the diagnosis. Mary Kay took care of him until he became violent, and she had to place him in a home. Six weeks later he had a seizure, lapsed into coma and never woke up.
After Smith’s diagnosis, Mary Kay learned to deal with finances and run the house. Finding strength in her faith, church and family, she kept going. Two years after Smith died, she remarried, moved into the new house she built with her second husband Austin Bush, and quit her job to travel.
But life was not done with her.
Fourteen years later, Austin was diagnosed with brain cancer and died within a year. Then her parents – the main part of her support system, died in her house more than a decade apart. Then her children began showing Alzheimer’s symptoms.
Elizabeth, or Beth, as the family calls her, is a spitting image of her father: same deep blue eyes and facial features. Even the same smile. She was the first to be diagnosed with early onset Alzheimer’s in 2006. The symptoms were vivid to the whole family, but most of all, to her mother. She could see the familiar pattern, same behavioral problems and forgetfulness that Smith went through 20 years earlier. Mary Kay still did not expect it to be Alzheimer’s. Even when Beth took a medical leave from her teaching job at Tucson High School, failed to pay her mortgage twice, and forgot about other bills.
This time there was no relief. First came the familiar powerlessness, and a painful realization that she will outlive her child. “I thought I could take care of her like I did for her dad,” Mary Kay recalled. Beth was not married and did not have children, and so Mary Kay took charge. She built a guesthouse on her property and moved her daughter there.
Beth’s progression was nothing like her father's. Very soon after her diagnosis she became violent, paranoid and emotional. She threatened to commit suicide, accused her mother of stealing, and refused to take medicine. The only people she seemed to trust were her brother–in-law Mark Baril and her neurologist Dr. Geoffrey L. Ahern. Even they were not enough. At one point, Mary Kay had no other choice but to commit her daughter to a mental facility for two weeks to get her behavior under control. Mary Kay had no clue how difficult it was going to be. “Think about putting your child in a psychiatric hospital. It’s probably the worst thing I’ve ever been through in my life,” May Kay said.
She remembers it vividly. Beth, looking like a ghost of herself, dragging her feet through the facility’s halls with her head tilted forward. It was unbearable.
The treatment helped. Beth became calmer, and Mary Kay was able to get guardianship to handle her daughter’s affairs. But her disease kept progressing rapidly. In August, 2011, Mary Kay placed her in a senior living facility. Now, Beth is gradually losing speech. She still recognizes her loved ones and wants to socialize with them. She starts a sentence with words that make sense and then lapses into mumbling. Six months ago she started having seizures, just like Smith. She has had three so far. It is a fairly common condition for dementia patients. Ten percent of them have seizures, especially in late stages.
In addition to the emotional stress, finances are also an issue. Beth’s care at the nursing home costs $5,000 per month. Her disability and Social Security cover half of it. The other half came from the money they received from selling her house and from an inheritance from Mary Kay’s late aunt. In two years it cost more than $100,000. Starting next year, Mary Kay will have to look for other financial solutions.
With Beth’s diagnosis and Cheryl showing symptoms, the family thought that their brother Steve might be fine. He is not. For him the disease began the same way it did for his father: with a depression. He stopped communicating with his family, which was the first alarming sign for his wife Sheryl but she still hoped it would pass.
He started having difficulties at work. A social studies teacher, he could not keep track of student papers and assignments, and kept forgetting about the meetings he had scheduled. Sheryl, who was teaching English at a high school at the time, would go with him to his school once a week to help him post grades.
Hearing the diagnosis felt like a train wreck. Steve felt angry. He knew from his own experience with his father what the disease was going to do to his family.
He is now in a moderate stage. He does not work, does not drive and spends most of the time at home, except when he walks the family dog. Before leaving in the morning, his wife packs lunch for him and puts in the fridge with his name on it. Otherwise he might not remember to eat.
Just like his sister Cheryl, Steve is very social and still has a good sense of humor. When in a social situation someone next to him forgets something, he usually jokes: “Wait a minute, that’s mine, you cannot do that.”
Cheryl is the least progressed out of the three so far. Even though her short-term memory is almost non-existent, her speech is not affected and, according to annual tests, her cognitive skills have not changed in four years. She is able to drive, and her long-term memory is exceptionally good. “I wouldn’t mind not remembering 1960s, but tomorrow I want to remember today,” Cheryl said.
Her husband, Mark, is convinced that the rheumatoid arthritis (RA) medicine she takes, slows the progression. Cheryl, who was diagnosed with the chronic disease of joint inflammation 11 years ago, administers daily shots of prescription medication. Unlike her siblings, her cognitive ability has not decreased in the last four years.
The University of South Florida scholars examined the relationship between Alzheimer’s and RA was researched by in 2010 and published in the Journal of Alzheimer’s disease. The researchers injected an anti-inflammatory protein into mice with Alzheimer’s for ten days and then conducted behavioral and memory tests. They found the mice that received the protein performing almost as good as the non-demented mice. The protein reversed memory loss and slowed down the progression of Alzheimer’s disease.(2) However, since it is not yet proved to be successful on humans, RA medicine is not considered an appropriate treatment for Alzheimer’s patients, including Cheryl's siblings.
The Barils believe that having a good support system keeps the disease in check. Staying positive and being strong in their faith keeps them from giving up. They rely on their church for moral support, and find strength in Bible studies. They do not feel sorry for themselves, and still hope for healing.
They are concerned about their four children. They share a feeling that Cheryl’s diagnosis has hit them harder than it might seem, that with the 50 percent odds of getting the disease, the children, especially the boys, got paralyzed in progressing with their own lives. Except for the eldest daughter Christa, who has two children, they do not think their children want to have families.Their sons Kyle and Derek disagree. They definitely do think about their future spouses, especially when talking about Alzheimer’s disease. They hope to have someone like their father to take care of them, if the genetics happen to kick in.
From the day their parents sat them down to share the news and until now they have gone through all the possible stages of acceptance. Derek used to find refuge in books, and then turned to writing. Kyle has been coming up with different ideas to fund Alzheimer’s research.
He cannot stand the thought of his mom being diagnosed with a debilitating disease that has no cure. The brothers are working on a multimedia project about the disease, that will incorporate the story of their family. They are planning to live like they are not going to get Alzheimer’s disease, playing what Derek calls a “genetic Russian roulette.”
In case if they do, Mark is planning to stay healthy for as long as it is possible. “I want to be there, if my kids ever have to go through this,” Mark said.
Mary Kay thinks that for Steve and Cheryl the situation is different than for Beth. “It makes a difference being married, having someone on your side helping not feeling isolated. It would have been better for Beth to lean on somebody,” Mary Kay said. She does everything in her power to make sure Beth is comfortable and happy. She even made arrangements for her daughter’s funeral.
As for herself, Mary Kay is not afraid of dying. In fact, she hopes she does not live long. Partly, because she always believed in the better world, partly because she knows that there are much worse things than death. But most of all it is because chances are when her time comes, none of her children will be there to say goodbye.
Update: In April 2014 Beth passed away followed by Steve in August 2015. Both were 51 years old. They were surrounded by family and friends.
I am proud to present you my Master’s project “Into Oblivion: Personal stories of Alzheimer’s disease.” Being the most ambitious project I have planned and achieved in my journalistic career, Into Oblivion is the result of several months of work. My main goal was to tell the stories of ordinary Tucsonans, who are living with Alzheimer’s disease every day, as well as to demonstrate in facts and numbers the scale of the disease. I picked Alzheimer’s as the topic for my project for three main reasons: science, people and storytelling.
Last fall, as I was researching baby boomers and future projections of how their life was going to be, I came across the expected number of Alzheimer’s patients. The estimates were as high as 16 million people by 2050, which is twice the population of the New York City. It seemed to me like an important story that needed to be told. Looking at clinical trials and studies conducted about Alzheimer’s, I realized there was a scientific story to it, too. I decided to do it, and to use as many means of storytelling as I could.
The difficulties of doing a medical story include lack of access to ongoing clinical trials, limited camera use in the hospital and other things that the HIPAA patient privacy rule reasonably requires journalists not to do. But there are great advantages to it too. The best part of scientific stories, in my opinion, is hope. Even in the most heartbreaking stories, knowing that there are thousands of people working hard every day to find a solution to a particular problem, and in this case it is the cure for Alzheimer’s disease, is somewhat comforting. Science provides answers, and sometimes, that is all the reader needs.
Finding lead characters for this story was probably my biggest challenge. Due to patient privacy, I was not allowed to attend the support groups, or to contact any patients directly. I have contacted every group in town, waited impatiently for them to get back to me and followed up when they did not. I wanted to write a human story, something that would let me use my writing to paint someone’s world, and show the challenges they face. Alzheimer’s disease, also known as “the long goodbye” seemed like the kind of a topic that would allow me to both use my interviewing skills and challenge my vocabulary in the writing process. Luckily, waiting paid off and I was able to find three families with amazing stories, who agreed to talk to me. And what I learned while working with these families is that once people decide to share their story with the world, they will talk. My families were very cooperative and open about their lives, and felt purposeful in doing so.
Another great advantage of doing a project like this one is the variety of ways to present the story. At first I was not sure how my families would react to the camera, but I was lucky, they were very comfortable. I was able to take pictures of important moments such as Lynne’s lunch with Edith, and Cheryl, Mary Kay and Mark’s visit to Beth’s; I recorded and photographed Gladys’ in her sharpest days. Being able to see and hear the Carreras, the Jaffes and the Minarik (Barils) in their homes doing usual things, in my opinion, adds a little more life to their stories. There is barely any disadvantage to using multimedia in storytelling. In my case, the only difficulty was the fact that I do not own any equipment. I had to make arrangements to rent it from the University of Arizona’s gear center each time.
Presentation was very important to me as well. For this project I experimented with online sources and I am fairly satisfied with them. For more detailed infographics, I recommend using Alzheimer’s Association’s annual “Facts and Figures” reports.
After careful consideration of online platforms to post my full project, I stopped my attention on glossi.com – a source that allows users to create and design digital magazines with embedded multimedia. Glossi offers many advantages to its users, such as a good selection of template page layouts, an option to create a page from the scratch, and a variety of fonts and colors.
But as any online platform, Glossi is limited in its functions and is not perfect. Some people, who read my story experienced problems with design that would not show up on my computer. I used several different computers to fix them and make sure that the design of my project looks the same for everyone. Besides, there is no search function, but there is a link between the table of content and the articles. Also, you might experience problems seeing the embedded videos. If you do not see them on pages 4, 12, 19, and 28 please switch to another browser, or check if your flash player is up to date.
The work on this project was one of the best experiences I have ever had, both professionally and personally. I have learned the importance of compelling reporting. I would never be able to tell any of the stories without spending enough time with each family. And when I say enough, I mean as much as I could have, to get the story right. Visiting each family in their houses, I would warn that I was going to stay as long as they let me and until they asked me to leave. I mastered my interviewing skills. Now, when I meet my interviewees I make sure I have the main points that I want to discuss written down, to help me stay on track, but I do not limit myself to them. I discovered that I prefer to have a conversation, instead of a Q&A exchange.
I learned to sift through large amounts of information. Researching for the scientific story, I came across dozens of medical articles, reports and news stories. I was tempted to include most of this information in my article, but I had to stay focused and narrow it down to the most important. It helps to find professionals in the field, who can explain complex medical matters. I was lucky to be able to interview Dr. Geoffrey L. Ahern and Dr. Phillip H. Kuo from the University of Arizona Medical Center (UAMC). I later used records of our conversations to guide myself through the scientific story.
This story made me a better person. Thanks to Roland and Gladys I now believe that true love really does last forever. Lynne's deepest love for her mother and pain of slowly losing her will remind me to be a better child to my own parents from now on. Mary Kay taught me not to worry about things before they actually happen, and when they do, to roll up your sleeves and do the work. And Cheryl with her undefeated positive spirit will forever be the definition of grace under fire to me.
Researching and writing about Alzheimer’s disease in Tucson was a fascinating journey. But there is so much more that can be said about it. As the next steps, I would look at the disease in global perspective, to see how France, Germany, Australia, UK, Japan and other countries are preparing for the increasing numbers of Alzheimer’s patients. I would examine how families in different cultures and local ethnic communities deal with caregiving and the stress that comes with it. I would compare lives of patients in rural areas to the ones in urban. I would want to know how 800,000 Americans with Alzheimer’s, who live alone, deal with their condition on moderate and later stages. I would look at Alzheimer’s from as many angles as possible, to make even one long goodbye at least a little easier.
Alzheimer's disease: facts and figures
7. McKhann G.M., Knopman D.S., Chertkow H., Hyman B.T., Jack C.R., Kawas C.H., et al. The diagnosis of dementia due to Alzheimer’s disease: Recommendations from the National Institute on Aging–Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dementia
2. Covinsky, K.E., Newcomer, R., Dane, C.K., Sands, L.P., Yaffe, K. (2003). Patient and caregiver characteristics associated with depression in caregivers of patients with dementia. Journal of General Internal Medicine, 18: 1006-14.