We tend to take our mental abilities for granted. When we start to lose these abilities, we get a wake up call.

    Fifteen years ago in my living room, I noticed an arrangement of fresh flowers. Puzzled, I asked my husband where these had come from. He said I should know they were sent during my recent stay in the hospital for an allergic reaction. A few more confused comments caused my husband to contact a physician.

    The next thing I remember was being in a hospital room with my husband and a neurologist. It apparently was late afternoon. I was asked if I knew Dr. C, my allergist. "Of course I do!" I quickly responded, and then went on to describe her. Thus ended my episode of Transient Global Amnesia or TGA, and I was free to go home.

    The Mayo Clinic website defines Transient Global Amnesia (TGA) as "a sudden, temporary episode of memory loss that can't be attributed to a more common neurological condition, such as epilepsy or stroke" (MayoClinic.com). During an attack of TGA, "your recall of recent events simply vanishes, so you can't remember where you are or how you got there." In my case, it was a scary, out of control feeling of disconnected images of people and places—hospital personnel, parking garage—mixed with surprise at sitting in an unfamiliar bed in an unfamiliar room. Repetitive questioning, usually the same question, is common among those experiencing TGA. I repeatedly asked my husband what time it was. Fortunately for me, he calmly repeated his answer.

    Transient Global Amnesia is, as the name implies, transient, brief and short-lived.  After one recovers, one's memory goes back to functioning normally, with one's memories intact. There are no long-term after-effects, and episodes are unlikely to recur. However, anyone who suffers an episode of dramatic memory loss such as mine should see a doctor, to determine whether the episode was indeed TGA and not a sign of a more serious condition.

    During such a visit, "a neurologist checks reflexes and coordination, asks questions to test memory and conducts tests such as an MRI, EEG and CT scan" (MayoClinic.com). My doctor asked me about my ability to move my arms and legs, and to answer questions indicating that I knew who and where I was. (My husband tells me that I volunteered information about the school district in which I worked and my title.) She checked my medical records, noting the recent hospitalization and steroid medications.  After ruling out limb paralysis, which might have indicated a stroke, and after discussion with my husband, who witnessed the episode, my neurologist reached her diagnosis; since I appeared to be back to normal in less than twenty-four hours and did not have a seizure, Transient Global Amnesia seemed certain.

    There was no further treatment necessary in my case. My TGA resolved itself on its own and, as is typical, I experienced no confirmed after effects. While I might be suspicious of the large doses of steroids I had recently had, the underlying cause of my episode of TGA is unknown.  My occasional migraines and stress may possibly be links and triggers.

    The incident reminded me of some similar experiences my father had had. Once or twice dad had been at work, confused about where he was, and was taken to the hospital. Tests were administered, and a stroke was ruled out. He returned home, back to normal activities and behavior. Had this been TGA? Had my father's episode of disorientation and my own have similar explanations? Unfortunately, the question only occurred to me when it was too late, when those who might have been able to answer it had passed. In my parents' generation, medical issues were downplayed and kept private—so as not to worry the children, among other reasons.

    Seven years after my episode of TGA, in 2004, while trying to exit from a restaurant parking space, my mother apparently stepped on the accelerator while the car was in drive rather than, as she believed, in reverse. While she suffered minor physical injuries and no one else was injured, the building didn't do as well. This turned out to be the beginning of a seven-year journey into the world of memory issues of a different, more lasting, degenerative type—Alzheimer's disease.


    Alzheimer's disease is "a chronic (irreversible), progressive, degenerative, ultimately terminal brain disease with no known cure" (Weinberger). It is named after a German neurologist, Alois Alzheimer, who in 1906 described the disease in a 51-year-old patient and examined her brain after she died. In the 1960s, "Alzheimer's Disease" was recognized as having the characteristics of a particular disorder. The disease strikes the control center for our memory at the brain's outer layer, the cortex. The deterioration of the memory is the disease's first and best-known effect, but eventually its ravages go even further, and "all motor and cognitive functions [are] lost," with the "heart, lungs and kidney ceasing to operate" (Weinberger).

    In the 1970s, Alzheimer's Disease was referred to as "senile dementia," but Alzheimer's and dementia are not, strictly speaking, one and the same thing. Dementia is "a general term for memory loss that is severe enough to interfere with daily life" and is not a normal part of aging; many other conditions conditions, such as unregulated diabetes and Parkinson's disease, can produce various degrees of dementia ("The Difference Between Alzheimer's Disease and Dementia"). Alzheimer's is, nonetheless, "the leading cause of dementia in the United States" (Weinberger).

    "It is now generally accepted that Alzheimer's begins years, perhaps even decades, before symptoms are noticeable," according to William Thies, chief medical and scientific officer of the Alzheimer's Association. "Earlier detection of people at highest risk for Alzheimer's and those who have the earliest forms of the disease will help us identify the right people for risk reduction and prevention trials" (quoted in "New Research Reported").

    According to "Alzheimer's Disease Genetics," a fact sheet produced by the Alzheimer's Disease Education and Referral Center, Alzheimer's is "characterized by the development of amyloid plaques and neurofibrillary tangles, the loss of connections between nerve cells in the brain and the death of these nerve cells." Beta amyloid, a protein fragment, accumulates in the brains of persons with the disease; this accumulation "clumps into hard plaques," together with "grotesquely twisted ropes of a protein known as tau." One avenue of research is focusing "on stopping beta amyloid from accumulating" ("Alzheimer's Disease Genetics"), although the cause-and-effect relationship is not yet wholly understood. Since this neurochemistry defines the condition, "the only confirmation of the presence of this disease" is "a post-mortem brain biopsy."

    According to David Weinberger, it is difficult to identify risk factors, other than the primary risk factor, which is simply age. The Alzheimer's Disease Education and Referral Center reports that "scientists believe genes play an important role in the development of this devastating disease." The National Institute on Aging (NIA) has begun the Alzheimer's Disease Genetics Study "to collect and analyze blood samples … from thousands of families around the world" in order to "identify people who are at high risk" in hopes that they will be able to "receive early treatment" ("Alzheimer's Disease Genetics").
 
    My mother suffered from the disease about seven years (the average duration, according to Weinberger). Early on, she knew something was wrong. She attempted to hide her deficits by making sure she had family phone numbers available throughout her apartment, written on Post-It notes. A simple decision like choosing a meal in a restaurant become an issue that she dealt with by requesting what I ordered.

    The disease progressed slowly, with my mother sometimes confusing appointment times, or not retrieving the desired word.  She recognized me, but had no recollection of the death of her parents or sister. She later became argumentative and accused my sister and me of stealing her money. In the very sad final stages, she was unable to eat or swallow, dress or walk.

    My family's hardest, most guilt-ridden decision was whether to move our mother from her home to an assisted living facility.  After much agonizing discussion, we decided it was best to have my mother remain in an Assisted Living Memory Support Unit in Rhode Island, where the surroundings and individuals would be familiar to her. With her two daughters living in different states, and dealing besides with significant spousal health issues, full time jobs and, in my case, grandchildren, the facility appeared to be the best option for all of us in order to balance all of our responsibilities. We tried to avoid taking hostile comments personally and "to remember that my relative is not being 'difficult' on purpose; rather that […] her behavior and emotions are distorted by the illness" (Farran and Keane-Hagarty).

    Since my mother was a bookkeeper who lived frugally and invested wisely, it was a kind of mercy that she was not aware of the more than $6,000 required reach month for her care in the Alzheimer's Support Unit.

    A vivid, intimate portrait of the course of the disease can be found in Lisa Genova's 2007 novel Still Alice, a well-researched fictional account of a 50-year-old professor with early-onset Alzheimer's. At first, Alice worked out ways to cope. When she couldn't remember what lecture she was scheduled to give, she would ask the students what the syllabus said for that day—each lecture was indelibly committed to her long term memory. Soon, however, she could not remember a family recipe, became lost in her own home, and had auditory and visual hallucinations. She felt herself "slipping into that demented hole."

    She stopped teaching. Soon she didn't recognize people, although she did still recognize emotions.  She thought a book that she was reading was one she had read before when actually, she had written it. "I miss myself," she said (Genova).

    Managing the disease, as the caregiver, can be extremely challenging and depressing, as one tries to respond adequately to the patient's increasing debility while also trying to respect the loved one's need to have some control. Caregivers learn to ask one question at a time and to allow the patient adequate time to answer. They learn the importance of touch—which can be as simple as holding hands—as well as the need for nuanced attention to the expression in the patient's voice, their need for routine, the time necessary for reorientation after a nap, the frequent need for repetition.  Rather than arguing or vainly trying to correct a mistaken impression, they learn to join their loved one in conversation in the AD world, as bizarre as that may sometimes seem. I found myself agreeing with my mother even when the string of words she repeated on the phone made no sense (see Fabares).

    Hospitals can be especially upsetting for Alzheimer's patients, who may wonder where they are and why strangers are poking them. It is very helpful for a family member to stay with the patient to be sure he or she has glasses, hearing aids and some familiar items ("Dementia a hazard in hospital").

    The physical, psychological, spiritual and financial toll on the caregiver can be overwhelming. Fortunately, expert advice is available, such as the classic reference by Nancy Mace and Peter Rabins, The 36- Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss, now in its seventh edition. Bruce Feiler explains that while our parents likely once encouraged us to be able to entertain ourselves, now they look to us "to help entertain them." We should avoid correcting them, but rather do our best to conform to their "understanding of the world," and try not to personalize when they complain about us.

    Those of us who have been parents of children and later caregivers of parents are frequently struck by the similarities in behavior between young children and aging parents with dementia. "Caring for a person with Alzheimer's can be like taking care of a two-year- old," writes Shelley Fabares, "except that your two-year-old learns something new every day and the person with Alzheimer's forgets something every day." Our challenge comes from the need to treat the aging adults with love and respect in spite of their sometimes hostile behavior. We soon forget the grief that our children's "terrible twos" and/or teens caused, but as our parents decline into the unfortunate condition resulting from the cruelty of Alzheimer's disease, this sadly becomes our final memory of them.

    One writer on caregiving calls this feeling "ambiguous loss."  Your loved one is "gone, but not gone. She is your mother, but not the mother you knew. If she had died, it would be easier to grieve the loss. It's hard to do that when she's sitting in front of you" (Whicher). I believe I began to grieve the passing of my mother months before her death, yet I could tell that my sister had a harder time coming to this realization. 

    It has been projected that Alzheimer's disease is likely to affect up to 16 million Americans by 2050, unless a cure is found. There appears to be a national focus on improvement in treatment, home care and prevention. In May, 2012, "the Obama administration launched an effort aimed at not just controlling, but eradicating Alzheimer's disease by 2025" ("Fund Ways to Fight Alzheimer's").


    Mark Shriver, author of A Good Man: Rediscovering My Father, Sargent Shriver, was asked, "How did dealing with your father's Alzheimer's change you?"  His answer:

 "The amazing thing about Dad at the end of his life was this: he didn't know he had created the Peace Corps, he didn't know if tomorrow might be sunny and beautiful or rainy and miserable—he was in the moment. I think Alzheimer's has taught me not to dwell on the past, to appreciate the person in front of you, as he did. It has also taught me patience, although I still don't have enough of it."

    There is little to smile about when we consider the serious effects on the people we love and possibly ourselves, yet I am encouraged by the seriousness and the financial support that is being given to this devastating disease on a national level, as we continue to hope to maintain lives of quality and meaning as our life expectancy lengthens.

MayoClinic.org. "Alzheimer's Disease."

Weinberger, David. Looking Beyond the Illness: Understanding and Treating Alzheimer's Disease & Related Disorders. N.p.: Brillig House, 1990.

Rogers, B., La Follette, J.G., Rowe, W.E. In The Company of their Peers: A Geriatric Peer Counselor Training Manual.  Skagit Community Mental Health Center, 1993.

 "The Difference Between Alzheimer's Disease and Dementia." ElderLawAnswers.com.

"Alzheimer's testing valuable even if it's imprecise." The Citizens' Voice (Wilkes-Barre, PA), October 3, 2011, A5.

Genova, Lisa.  Still Alice. NY: Pocket Books, 2009.

"Dementia a hazard in hospital." The Citizens' Voice (Wilkes-Barre, PA), June 20, 2012, A2.

Farran, Carol, and Eleanora Keane-Hagarty. "Twelve steps for caregivers." The American Journal of Alzheimer's Care and Related Disorders & Research, November/December 1989.

"Alzheimer's Disease Genetics." Fact sheet produced and distributed by Alzheimer's Disease Education & Referral (ADEAR) Center.

Feil, Naomi, and Vicki DeKlerk-Rubin. The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer's-Type Dementia. Baltimore: Health Professions Press, 2002.

Fabares, Shelley. "Caring for My Mother."

Feiler, Bruce. "The Father is Child of the Man." The New York Times, July 29, 2012.

Mace, Nancy L., and Peter V. Rabins. The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss. Baltimore: Johns Hopkins University Press, 5th edition, 2011.

"Fund Ways to Fight Alzheimer's." Citizensvoice.com.  Originally published June 11, 2012.

 "New Research Reported at the Alzheimer's Association International Conference Advances Validation of New Diagnostic Guidelines." Retrieved from http://www.alz.org/aaic.

Alzheimer's Disease and Related Disorders Association. "Statistics: About Alzheimer's Disease." 2003.

Witchel, Alex. "How My Mother Disappeared." The New York Times Magazine, September 9, 2012, 40-59.



     Originally from Providence, Rhode Island, Rhoda Tillman is Coordinator of the Senior Peer Counseling Program at Community Counseling Services of Luzerne and Wyoming Counties in Pennsylvania.
 
     Rhoda earned her AB from Brown University in Russian, her MEd from Rhode Island College in Counseling, and her Ph.D. from the University of Pennsylvania in Organizational Leadership, Curriculum and Instruction.

     She retired as Coordinator of the MS in Educational Leadership/Principal Certification Program at Wilkes University in 2010, and from the Wyalusing Area School District in 2001, after serving as Assistant Superintendent for Elementary Education for twelve years.

She is a past president of Temple B'nai B'rith and is a member of the Youth Aid Panel, an initiative of the DA's office. She is also a volunteer for CASA (Court Appointed Special Advocate) for children.

     She and her husband, Steve, Professor Emeritus of Wilkes, are the parents of two sons and three grandchildren.

     Her paper was originally presented to the Wyoming Valley Torch Club on October 8, 2012.