"Arthritis, that's what it is": An Analysis of Alzheimer's Denial

Faith Roncoroni, LSAW 2010

"Then I remember that God is really, really old. So maybe God has God arthritis. And maybe that's why the world sucks. Maybe God's hands and fingers don't work as well as they used to." Flight by Sherman Alexie

Anyone who steps into her house can't help but notice the clutter of antiques hanging from her walls, lying under foot, decorating her countertops, and consuming each and every room. They might recognize the Lone Ranger holster, gargoyle stools, little green cupboard, and Steiff Teddy Bears from the Antique Road Show; those antiques that make your jaw drop when they are appraised or leave you baffled when the antique connoisseur discusses the object's seventy-five year history. I still don't understand why someone would purchase a toy if not to play with it, but sadly these toys on TV never leave the box and fulfill their purpose by creating memories. Not her antiques. That Lone Ranger holster, draped across the back of the chair, saved me from countless bandits and savage Indians while the Steiff Teddy Bears, sitting under the holster, snuggled up with me when I was sick. That green, chipped toy cupboard sitting in the corner, contained all the ingredients and cookware necessary for me to show off my Italian culinary skills or bake cakes. Over there, those gargoyle stools, nearly hidden by the ornate monkey pod table, made it nearly impossible for the ranchers to round up their cattle. The mountains were so steep that at least one ranch hand would find himself dangling from the edge of the cliff, hanging on for dear life - don't worry - miraculously, they were all strong enough to pull themselves up. They all survived. And if the cattle were missing they could often be found near the blue swirls on the rug, getting a drink or wading in the water. No antique was too valuable to avoid my hands; she trusted me and I will be forever grateful for my childhood, my memories.

I desperately want to share my past with her, reminisce with her, recount how she role played in my childhood reality. We are past that. It's her turn to fantasize, but I cannot seem to play along as well as she did. I need to understand her reality before I can enter it. I need to understand Alzheimer's before I can comfort her. When presented with the opportunity to interview, analyze, and gain a better understanding of how illness impacts a patient's life, I knew my gram's inability to discuss Alzheimer's directly made her a difficult subject for the interview. I chose her anyway. Since we never openly mention her dementia, sundowner's syndrome, or Alzheimer's, I needed pay careful attention to word choice, specifically censoring the ten letter word. To avoid the word "Alzheimer's," I presented the interview as a conversation on illness for an English class. I had previously discussed talking to her about her experience with illness, but we never set a specified date, because it would have given her an event to worry about forgetting. I surprised her at her house; she did not know I was coming home from school. Knowing from past experience that the slightest change in routine or location will disorient, confuse, and frustrate her, I "talked" with her in the comfort of her house. She relaxed by lying down on her couch in the living room, while I sat on a little gargoyle stool so we were at approximately the same eye level. Although we were both physically comfortable, the nature of our relationship dictated which questions I felt bold enough to ask and which I avoided out of consideration for both of us. My discomfort at asking her questions which deliberately perplexed her filled me with guilt, not only preventing me from asking certain questions, but compelling me to help her answer them. Still, I encountered difficulties. Watching her struggle, get upset, and become frustrated was painful. I also needed to beware of sudden mood swings, making sure that the issues did not upset her enough to degenerate in to an argument between her and the family. Cary Henderson describes these "really awful" mood swings as one of the "bewildering" aspects of Alzheimer's (32). An example of severe changes in the disposition of a person with Alzheimer's can be found in John Haugse's Heavy Snow. Not only does Haugse write "Dad's moods changed rapidly and without warning," but he shows the physical change in facial and body language through his illustrations (36). The once pleasant, social man turns into a sneering, hunched over, Gollum-like figure while another frame shows him clenching his fist, shouting in response to a reference about selling his house. Witnessing similar transformations in my gram, I knew the combination of sundowner's syndrome with the nighttime interview put her at a higher risk for an aggressive outburst due to the build up of her "frustrations and sensory stimulation" during the day (Kessler 199). Fearing that an outburst would terminate the interview, I experienced uneasiness until I realized that I did not need to prove her confusion or Alzheimer's to anyone. I did not need to confirm what I already knew. Despite her denial and/or ignorance of the disease, my questions would hopefully provoke her to provide a better insight into Alzheimer's, how it affects her, and what I can do to help her deal with her illness. The interview began with seemingly simple questions about her family and daily schedule, but I knew that remembering names and recent activities would create confusion. Surprisingly, even though we talked later in the day she was very lucid, mentally struggling to remember but only getting one grandchild's name wrong, missing her age by one year, and relying upon only two reoccurring delusions to explain unknown events surrounding her aneurism (Rossi 3, 6, 9-10). After completing the preliminary questioning, I tried to delve into a conversation about her experience with illness to which she responded curtly, folded her hands neatly in her lap, and looked to me for the next question. When she elaborated on her responses to questions about illness, she either answered the question quickly before diverting the conversation away from the topic or merely ignored the question completely before going off on a seemingly random tangent. After re-reading the interview several times I noticed that what appeared to be an off-topic or irrelevant response actually revealed her confused thought process: asking questions about illness normally lead to memories and reflections of her family and community from her distant past.

Most of her apparently random, disconnected responses followed a similar pattern of disorganization which Arthur Frank would categorize as a chaos narrative due to its "time without sequence, telling without meditation, and speaking about oneself without being fully able to reflect on oneself" (The Wounded Storyteller 98). While I could only match my gram's responses up with two characteristics of the chaos narrative, desire for predictability and lack of organization, I realized that her narrative only appeared chaotic; her accounts and thoughts were an intricate weaving between her fear of dependency and her need to reclaim control to reaffirm her value. Her presumably incoherent responses paralleled the associative frame transitions in the Alzheimer's film Away From Her. A camera close-up of flowers in Mary's hand pans out to a scene of Fiona fixing flowers in a vase. Focusing on a small detail, the flowers, helps the audience correlate the seemingly unrelated scenes, but the associative thoughts of Alzheimer's patients appear completely disconnected and random because there is no director to focus on the association, to correlate the thoughts. My purpose for the remainder of this essay is to be the director, to make sense of an interview that seems to lack structure by dividing it in half; the first part of the essay will focus on fear, specifically the fear associated with dependency and the stigma of illness while the second part will examine coping mechanisms such as denial and reaffirmation. In short, the paper will have four sections: dependency, stigma, denial, and reaffirmation.

Dependency "Three. No. Do I have three?"

Illness often results in some degree of change by losing control over the body, mind, and/or life. Slowly, the patients increasing lack of control, whether physical or mental, debilitates them, ultimately forcing them into dependency. Although the topic of dependency was not openly raised, my gram continually expressed her subconscious fear through subtle remarks, tone inflection, and body language. My gram's dependency became apparent even before the interview officially began. When the time came for her to initial her privacy preferences on the consent form, she turned and asked me "MB?" waiting for verification before she signed the line (Rossi 3). Her reliance on me to help her correctly respond to direct questions that we both knew the answer to carried over into the actual interview. The simple, straight forward introductory questions made her pause and look away in contemplation, but when she finally responded to the question of how many children she had, she answered, second guessed herself, and then restated her answer in the form of a question, "Three. No. Do I have three?" She waited for me to confirm whether she was correct or not (Rossi 3). Several times throughout the course of the interview she looked to me for approval before continuing with her account, but when I could not help her she responded with, "your dad might remember when it was" (Rossi 10). Although my dad was absent during the interview, she found herself also depending on him to verify or correct the "facts" of her story. As the interview turned to the topic of dependency, she became more uncomfortable. For instance, when we talked about the care at the hospital, where she needed to receive help from others and depend upon the medical staff, numerous pauses, soft quiet tones, and fidgeting replaced her normally loud, overly talkative disposition (Rossi 7-9). Even discussing the common situation of being cared for while sick or in the hospital, which nearly everyone has experienced, made her clearly uncomfortable as implied by the brevity of her direct responses to the topic. In Cary Henderson's memoir of his experience with Alzheimer's, he succinctly explains the uneasiness and frustration of dependency that enveloped my gram toward the end of the interview: "I just feel so darn useless at times. I just feel a sense of shame, in a way, for being so unable to do things, and so dense" (18). Mirroring Henderson's account, my gram's body language clearly revealed her shame and embarrassment for needing to rely on others. While acknowledging the importance of her family's help through her illnesses, she mentions her dependence quickly and quietly so she can move on to a more comfortable topic (Rossi 19).

Stigma "But they smoked, ya know? And they're the ones that are gone."

To combat the fear of illness and dependency, society attaches a stigma to disease, where "sick persons are understood to be responsible for incurring their illness, usually by their life-style, stress, or feelings of unresolved anger and depression, and they are also responsible for getting well again" (Couser quoting Hawkins 9). Arthur Frank more blatantly defines the stigma of illness as "literally, a sign on the surface of the body marking it as dangerous, guilty, and unclean" (At the Will of the Body 91). By blaming the person for their illness, "healthy" people believe that they can control their bodies and eliminate the possibility of becoming ill and dependent through preventative measures. My gram's belief in the stigma of illness surfaced in two ways: when she explained her healthiness and when she mentioned her brother's unhealthy habits. In the beginning of the interview we focused on her illness, but every time she alluded to a decrease in health, she immediately followed it with an emphasis on her survival.

The fourth time she followed this pattern of illness but survival, she linked her ability to overcome instances of poor health with her actions by claiming, "well I must've taken good care of myself" (Rossi 10). Her response shows that she believes she can control her health, as though doing some positive action "x" will prevent becoming ill with "y." Therefore, people with "y" only get "y" because they did not do some positive action "x" or did some harmful activity "z."

Disturbingly, blaming the illness on the person provides comfort for others. To explain this disconcerting notion, Frank claims that "guilt may be preferable to uncertainty," because being responsible for illness allows others to separate themselves from the illness and cling to the belief that they can prevent becoming ill (At the Will of the Body 111). The next time my gram mentioned how she took good care of herself, I asked her if her family or friends suffered from illness. Her previous explanation for her healthiness was juxtaposed against her brothers' bad habits, smoking, which resulted in their deaths. She stated, "my brothers were heavy smokers, and they're all gone. They died" (Rossi 11).

Examining the order of events in her response shows how her statements align with her belief in the stigma of illness; she describes her brothers' actions before mentioning their illnesses, using their actions to explain why they were unhealthy. When she refers to one of her brothers later in the interview she reverses the order between cause and effect of illness by saying, "but he's gone now. But they smoked, ya know?" (Rossi 18). In this instance, she still manages to associate their illness, and eventual death, with their bad habits by following her claim with a rhetorical question, as though smoking will inevitably lead to a shorter life. Although studies show the harmful impacts of smoking on people's health, my gram solely blames their death on smoking itself instead of lung cancer or complications of respiratory problems.

Denial "the big thing was to get out on the front porch and sit in the rocking chair"

Before reading the literature for our class I assumed my gram denied her illness, but then I began wondering if she knew she had Alzheimer's and, if so, did she understand that it causes her confusion, memory loss, and agitation. While reading some of the illness narratives, I noticed that patients use humor to conceal their illness and reliance upon others for clarification. For instance, Haugse's father attempts to mask his confusion at seeing his wife in front of a strange house, resulting from his inability to recognize his house, by playing dumb and pretending that he was joking (14). Similarly, in the scene from Away From Her where Fiona's doctor presents her with scenarios and asks how she would respond, she relies on humor as a form of avoidance. When the doctor asks what she would do if she was at the movies and saw a fire that no one else saw, Fiona jokingly evades the question by claiming that she does not go to the movies anymore. During the interview I looked for skillful forms of denial, such as humor, but still struggled to decide whether she was oblivious to her illness or if she used techniques of outward denial. After re-reading the transcript several times, I realized that she acknowledged her illnesses, specifically a problem with her memory loss, but cleverly employed three different methods of denial: avoidance, blame, and delusion.

Although denial is a common response to illness which many authors mention in their illness narratives, Arthur Frank suggests that "labeling the ill person's behavior as denial describes it as a need of the patient, instead of understanding it as the patient's response to his situation" (At the Will of the Body 67). By criticizing the inclination to categorize a response as denial, Frank recognizes need and response as mutually exclusive, but Arthur Kleinman believes "denial protects the patient from the frustration due to lack or failure of expression," functioning as a necessary response (53). For my gram, denial serves as her coping mechanism, a response necessary for her metal and physical survival. In her illness narrative, she denies having any major illness or significant memory loss through avoidance, blame, and delusion so she can preserve her positive self image and find value in her life.

Avoidance was the most noticeable from of denial throughout the interview because her word choice, facial expressions, body language, and voice fluctuations directed attention to her inconspicuous attempts of diverting the conversation away from the uncomfortable topics of dependency and illness. To avoid an outburst or shut down, we talked about illness in general and avoided mentioning memory loss for a while. During our discussion of illness, she mentioned her aneurism multiple times, but when I asked her if she could explain an aneurism, she succinctly replied "I don't know," remembered being told that she was "unconscious," and proceeded to point out the deep purple, fist sized bruises on her arms and legs (Rossi 7). Even though she could not physically point out or describe an aneurism, she acknowledged that "a lot of people don't survive those things." She emphasized the danger of an aneurism four times but only referred to it by name once. Her avoidance in naming the illness made the subject of her experience easier to talk about, because the generic term "it" lessened the reality, importance, and negativity associated with the word "aneurism." Clearly she did not mind mentioning the aneurism but delving into her feelings, memories, or any specifics of the experience resulted in distress. The same responsive method of avoidance occurred when "memory loss" was mentioned; she briefly answered, if at all, the questions about her memory and then proceeded to redirect the conversation to her past, talking at length about her childhood and family. Her avoidance of discussing her problems, more specifically her diversion from the unnerving topic of memory by reverting back to her past, mirrors Kessler's description of "validation therapy." The elderly who do and do not experience memory problems "want and need to return to their past as a way of resolving life issues before they die." Kessler strengthens her portrayal of avoidance as a survival mechanism instead of a symptom of Alzheimer's when she claims "an older person returns to the past to relive the good times and deal with the bad as a way of wrapping up loose ends, a way of coming to closure and finding peace" (88-9). Validation therapy becomes apparent through my gram's repeated positive depiction of her past, shown her mentioning the word "wonderful" twenty-seven times, almost all of which she uses to describe her family and past (Rossi 4-16). We spent the majority of the interview focused on her distant past; she spoke more freely, at length, and with fewer pauses than when talking about illness. She dwelled on memories of her family, neighbors, and jobs to stress the importance that strength and the ability to help others plays in her life, while simultaneously using her emphasis as "a strategy to distract attentions from other, more delicate points," i.e. her experience with illness and dependency (Portelli 49). Since she continually avoided the sensitive topic of illness and seemed to enjoy recalling distant memories, I followed a stressful question about memory loss by expressing interest in what she considers her favorite memory. She answered the question ending her response with "yep, I can't think of anything much. Of course after I go to sleep I'll be..." (Rossi 16). Once again she avoided further conversation on memory by conveying her desire to stop talking about the subject through not so subtle hints at tiredness. Blame is another common way in which people with Alzheimer's deny their illness; they often blame their forgetfulness on other ailments to justify or at least lessen the severity of their memory loss. Haugse's father dismisses his memory difficulty as nothing more than a result of old age, (11) while Henderson admits to having the disease but still believes that he "must have another problem besides Alzheimer's" that causes his forgetfulness (7). My gram also resorts to blaming her problems of remembering on her age and inability drive. This excuse could justify the difficulty of staying in touch with a friend living across town but does not explain why she can not remember whether she has seen her neighbor outside recently, which was the very issue that prompted her excuse (Rossi 17).

Delusions, while barely apparent in the transcript, consume my gram's life as the most prevalent form of denying her memory loss and appear in many Alzheimer's narratives. In Away From Her, Grant's initial reaction to dealing with his wife's romantic delusions reminded me of the interaction between my family and gram. The delusion: Fiona tells her husband Grant how she went to a baseball game with her husband/lover Aubrey and then took him to visit her grandparents on a lake. His reaction: Grant tries to explain that her grandparents never lived on a lake, that she lived in the house she just described, and that he, and not Aubrey, is her husband. Her reaction: at first she incredulously looks at him, but his insistence makes her uncomfortable, brings tears to her eyes, and results in her walking away from him. Like Grant and most families dealing with Alzheimer's we tried to correct her, which only lead to confusion, anger, and frustration.

After reading the literature of the class, I realized that what appears to my family as merely a delusion is a form of denial that allows Alzheimer's patients, like my gram, to maintain a sense of independence, usefulness, and value. While the delusions of Alzheimer's lack the same degree of awareness and deliberation of denial, "self-deception makes chronic illness tolerable. Who can say that illusion and myth are not useful to maintain optimism, which itself may improve physiological performance" (Kleinman 48). In The Ride Together, the autistic brother David becomes so immersed in his television skits that he truly thinks he interacts with the characters as part of the show; his delusions entertain and comfort him (Karasik 64-5). Similarly, a caregiver at an Alzheimer's facility describes the positives of delusions when she comments on a resident who "isn't aware that she has memory loss. Certainly she has no idea she has been diagnosed with Alzheimer's or that she is living in an Alzheimer's care facility," allowing her blur between reality and imagination to reduce the anxiety and frustration of illness (Kessler 119). My gram often fabricates stories to explain events she can not remember in order to make sense of her confusion. For instance, when I asked her if she remembered anything leading up or following her aneurism, she replied honestly by relating her delusion. Without hesitation she responded, "no, I don't," stuttered, and then told the story of how she was walking outside to mail a letter when she passed out. Luckily people were with her and they were already heading to the hospital for a check up (Rossi 10). Delusions of Alzheimer's patients are not merely fabrications, but reality; Cary Henderson recalls the difficulty in distinguishing between what physically happened and what he remembers by claiming, "I'd be absolutely sure that something had happened and it really hadn't happened" (87). His account with Alzheimer's delusions reveals both the power and danger of living in a different reality. In my gram's case, her unquestioning belief in her delusion shelters her from the stark reality that her son and grandson took turns resuscitating her limp, soiled body. Her family's tears, her excruciating physical pain, and countless weeks in the hospital do not exist because, like some residents Kessler describes from the Alzheimer's facility, she "is always so confident in her delusions, so articulate, so precise" (5) that she would never question her thought unless challenged by someone else.

Reaffirmation "I have my appendix and tonsils and adenoids"

Many of my gram's responses hinged upon denial, but admitting to her dependency or illness left her debilitated. Reflecting on her illness lead to feelings of vulnerability, uselessness, and worthlessness which Henderson continually emphasizes in Partial View; he claims "I've been thinking about myself. Some time back, we used to be, I hesitate to say the word, 'human beings.' We worked, we made money, we had kids, and a lot of things we did not like to do and a lot of things we enjoyed" (35). Henderson's themes of purpose through occupation, family, and obligation recur in the interview, surfacing after my gram recounted an instance of dependence or admitted to having an illness. In short, she reaffirmed her control, independence, and value by remembering instances when she was in positions of responsibility and power. The most obvious example of her need to reaffirm her worth, after discussing her reliance on others, came when I asked her how her family has helped her through her illness. She said the first part of the answer quickly and quietly as though ashamed of her dependency, but she immediately followed her distressing acknowledgement by loudly reasserting how she helps her family when necessary (Rossi 19). In another instance, when I asked her if she has experienced any memory loss, whether it has increased with her age, and what it felt like, she replied yes in three short sentences without even touching on the last two parts of the question and, instead, began talking about school as a young girl (Rossi 14-5). Knowing that my gram desperately wanted to become a teacher when she was younger lead me to expect hearing the story during the interview, but I was surprised at the time she chose to tell it. She did not even hesitate between the two distinct concepts of memory problems and playing school, because to her, the subjects were not just connected but dependent upon one another. Not being able to recall events and admitting to her memory loss left her exposed, vulnerable, and dependent on those who could remember. To make up for her inability to control her memory, she reverted back to the distant past as if to compensate for the forgotten recent past by showcasing her ability to recount details. More importantly, she not only reclaimed a sense of control by relating what she knew, but the moments she focused on emphasized her power and control in the situation she described. She recalled the school role playing, claiming that "some of the kids would make believe they were my pupilsI was the teacher" (Rossi 15). My gram tried to reclaim control by explaining a different memory, while further empowering herself by specifically describing her role as "the teacher," a role indicative of responsibility and control.

Repetitively vocalizing her dependence through her illness narrative made her uncomfortable; her short, incomplete responses denoted her distress. As a result, she tried to reaffirm her value by following each response with an explanation or a past example of self-sufficiency, when she had control, when people relied upon her. The need to reclaim her independence, which in her mind is synonymous with value, carried over to her actions throughout the interview. In the middle of our conversation, her phone rang and I asked her if she would like me answer it for her. Normally she says yes or even asks me if I mind answering it for her, but after discussing the issue of losing independence, she adamantly told me that she would answer it (Rossi 8). A pattern developed where every time she admitted dependency, she spent at least twice as long trying to lessen the degree of reliance. She diminished the importance of her dependence on pills by medically elevating herself, examining common instances of dependency which she avoided, claiming "I have my appendix and tonsils and adenoids" (Rossi 9 and11). Her inability to drive and dependency on alternate forms of transportation also surfaced several times throughout the interview. Although she acknowledged the inconvenience, she also dismissed it as a common part of life, saying "a lot of us don't drive anymore, and that's a big handicap. To go anywhere, you have to depend on someone else" (Rossi 12). The next time she mentioned her inability to drive, she focused on the restrictions associated with dependency, but tried to reclaim control by portraying the decision to stop driving as her own; although she said "I don't want to drive," (Rossi 12) taking away her license was one of the most difficult, argumentative interactions between her and my father. Since my gram felt more at ease discussing her family instead of her illness, I began asking her questions about her children without realizing that she kept referring to her distant past, before her children were born. Possible difficulty in remembering recent events, which would make her vulnerable, resulted in diversion. The conversation turned to her past, gratifying occupation as a long distance telephone operator. Talking about her past accomplishments filled her pride, much like the way an Alzheimer's resident holds onto "a framed picture of herself from those days" when she was a well known Rockette to remind her of her success (Kessler 73). Remembering her past achievements, my gram told me that during the war she was transferred from Pennsylvania to Virginia because "they were so in need of telephone operators." Her reason for being transferred increased the importance of her job because it emphasized the country's need for her services (Rossi 13). Later in the interview she described the differences between telephone operators in Easton Pennsylvania and Norfolk Virginia; although Easton had "enough [circuits] for the area," in Norfolk she could place calls directly to California. She accentuated the superiority of the telephone operators in Virginia, the position she felt privileged to hold, by elaborating on its rarity and importance (Rossi 16). Without realizing the pattern of her response and her inclination to revert back to her childhood and young adult memories, I asked if she could remember any childhood stories about my brothers and me. She never answered the question but proceeded to give me advice on the proper way to raise children, explaining that "children need a lot of attention." Her desire to teach and enlighten me continued as she defined the words she used to answer my question, such as "fringe benefits" (Rossi 13). Imparting knowledge allowed her to reaffirm her position of power, control, and worth instead of openly acknowledging her inability to answer the question because she could not remember. Continually, she returned to the importance of teaching, helping, and serving others whether she got milk for her neighbors or sent Christmas cards to the troops. I began to realize that feeling indispensible and being able to contribute to the community were her principal concerns, that similar to most people with Alzheimer's, she "miss[ed] being important-miss[ed] being needed" (Henderson 74). A specific instance where she emphasized this concern was when she focused on the importance of neighbors helping each other and how she "used to babysit" in her neighborhood. Each time she described herself as playing an active, independent role in the community, she used the past tense, implying that she no longer helps her neighbors. Instead of openly claiming that her diminished independence restricts her ability to take care of the children in the community, she subtly correlated the change in her ability to help others with the change "of the times." She explained that people where very close with their neighbors and saw one another on a regular basis, establishing her childhood community, which she still lives today, as social atmosphere where "the big thing was to get out on the front porch and sit in the rocking chair" (Rossi 16-17). By describing the neighborhood as foreign and closed off, she created conditions which justified her lack of involvement; in short, she blamed her inability to help others on the change of the community.

Conclusion "But I survived it."

Her responses during the interview show that her anxiety of losing control over her life diminishes her self-confidence, but when her fear of dependency is coupled with the stigma she attaches to sickness, she must deny her illness through avoidance, blame, and delusion in order to view herself as valuable, useful. Her most important concerns were being helpful, impacting the community, and maintaining a sense of usefulness and independence, but if she accepts that she is sick, she must accept that she is dependent, and according to her beliefs, that she is responsible for her inability to help others and be useful. Therefore, her denial maintained her self perception of being healthy, helpful, and necessary in people's lives, but recounting past instances when people needed and relied upon her reaffirmed her worth; in short, she used denial and reaffirmation as coping mechanisms against the dependency and stigma associated with illness.

Work Cited

Rossi, Mary. Personal Interview. 27 Mar. 2009.

Couser, G. T. "Introduction: Human Conditions- Illness, Disability, and Life Writing," Recovering Bodies: Illness, Disability, and Life Writing. Madison: U Wisconsin Press, 1997. 3-17.

Frank, Arthur. At the Will of the Body: Reflections on Illness. NY: First Mariner Books, 2002.

Frank, Arthur. "The Chaos Narrative," The Wounded Storyteller. Chicago: The University of Chicago Press, 1997. 97-114.

Haugse, John. Heavy Snow. Deerfield Beech, Florida: Health Communications Inc, 1999.

Henderson, Cary. Partial View: An Alzheimer's Journal. Dallas, Texas: Southern Methodist University Press, 1998.

Karasik, Paul and Judy. The Ride Together: A Brother and Sister's Memoir of Autism in the Family. NY: Washington Square Press, 2004.

Kessler, Lauren. Finding Life in the Land of Alzheimer's: One Daughter's Hopeful Story. NY: Penguin Group, 2007.

Kleinman, Arthur. "The Personal and Social Meanings of Illness," The Illness Narratives: Suffering, Healing, and the Human Condition. NY: Basic Books, 1988. 31-55.

Polley, Sarah, dir. Away From Her. Lionsgate Films, 2007.

Portelli, Alessandro. "What Makes Oral History Different?" The Death of Luigi Trastulli and Other Stories: Form and Meaning in Oral History. Albany, NY: State University of New York Press, 2001. 45-58.

Interview Questions

What is your name?

How many children do you have?

What are their names?

Do you have any grandchildren?

How many grandchildren do you have?

What do you do on a typical day?

What did you do yesterday?

What did you do today?

How is the nutrition center? What is good and/or bad about nutrition center?

What did they serve at nutrition for lunch today?

Have you ever been in a hospital?

Why did you have to go to the hospital?

How was your care at the hospital?

What do you think about the current medical care system?

What illnesses have you suffered from during your life?

Which illness has most impacted your life? Why?

When did you have your aneurism?

Have you experienced any changes since your aneurism?

Did any of your close friends or family suffer from memory loss? How did their memory loss affect you?

Are there any positives that result from forgetting?

What is your relationship with your family like? Has your relationship with your family changed over the years? How? Why?

Has your view of religion changed? Why do you think your faith has stayed the same/ Why do you think your faith has changed?

Being placed in a nursing home is a common fear of the elderly. Do you share this fear? Why do nursing homes provoke a sense of fear? Why should being placed in a home be avoided at all costs?

Are there any circumstances where sending a relative to a nursing home is not only appropriate but necessary for the patient and/or patient's family?

Transcription of Interview

Gram: Do we have enough light in here?

Me: I can turn on some more lights.

Gram: Yeah turn the overhead lights on. I think it's over there by the door.

Me: (footsteps)

Gram: Is it, is it on theon this side. That's the upstairs light I think.

Me: Oh, that light is out.

Gram: Behind this door here hunny.

Me: This one?

Gram: Yeah, is there a light? It's

Me: No.

Gram: There's no switch there?

Me: No, there's no switch there.

Gram: Well how bout on that side.

Me: Nope, no switch.

Gram: Then look over by that desk.

Me: Um, here I'll put on these lights.

Gram: Oh.

Me: How about I put on these?

Gram: I don't think there's a bulb in there hunny.

Me: Ok. That's fine. I'll put on this one.

Gram: There's one over there.

Me: Yeah, I'll get it.

Gram: Ohhh, Hope (endearingly as I walk around her living room turning on all of her lamps).

Me: No, it's fine. (pause) There we go. That's better.

Gram: Can you see alright?

Me: Yeah. I'm good. Here I think this little. I don't know where that light switch is Gram. I never remember even turning it on.

Gram: It's not by the door there, is it Hope? (said a little louder)

Me: There's, right here.

Gram: Yeah.

Me: This is the light switch for that light. (flick of light switch)

Me: There we go.

Gram: Hey! (loudly and triumphantly)

Me: We got it.

Gram: Hehh Hehh! (loudly and triumphantly) Where was it?

Me: Back here.

Gram: Yeah.

Me: By this door.

Gram: Oh you sweetheart. I hope that's enough light.

Me: Yeah, that's enough light.

Gram: Oh, now all the lights are lit (laughter).

Me: Yeah. Looks good. (Then I go over the consent form for her, reading it aloud while she lies down, sitting up on her couch.) (As I go over the consent form and she hears the word illness, she tries to figure out why I am interviewing her for my class.)

Gram: Now is this my arthritis in my knees and everything?

Me: Whatever you want to talk about Gram.

Gram: Well that's, no, no. That's alright, you, you suggest.

Me: Well I'm just going to ask you questions and you, (She interjects with "ok, ok") whatever comes to mind you answer. Ok?

Gram: Yeah. (I go back to reading the consent form, but she is still trying to figure out why I am interviewing her.)

Gram: Arthritis, that's what it is. (trying to convince herself)

Me: Well I'm just talking illness in general. (Again I go back to reading her the consent form.) (When it was time to sign the consent form she checked her initials by asking me "MB?" as though she needed me to verify it for her.)

Me: Ok. So we'll start off with some questions about you and your family and just what you do on a regular basis. So, what is your name?

Gram: Mary A. Rossi.

Me: How many children do you have?

Gram: (She pauses and looks off, contemplating.) Three. No. Do I have three?

Me: Mmm hmm.

Gram: Tony, Johnny, and Ren (She stops herself, knowing that Renee is wrong), and Paula. (She counts off on her fingers as she says each name.)

Me: Yup.

Gram: Ok. Three.

Me: Do you have any grandchildren?

Gram: (She smiles broadly as shakes her head yes) Do I have to tell you how many? (She says this as though she is dreading it.)

Me: If you'd like to.

Gram: Uh huh. Yeah, well now let's start with Tony.

Me: Ok.

Gram: (pause) He had (pause) three, right? Jason, Tony, and Melissa. That's three. (looks to me for approval, as though I need to confirm and validate what she said as true before she says the rest of the names.)

Me: Mmm hm.

Gram: And who's after Tony, Pauline. Paula had (long pause) Jason and Willie. (She counts off on her fingers again, as she says each name.)

Me: Close. Willie's right.

Gram: Willie

Me: It starts with a B.

Gram: Brian! (She says it loudly.)

Me: There you go.

Gram: Brian and Willie. Ok.

Me: Mmm hm.

Gram: And then we have, mmmm, Ethan, Owen, and Hope (She rattles our names off quickly). Ok.

Me: That's a lot of great-grand(I stop myself midword), grandchildren.

Gram: They're great grandchildren.

Me: Yeah you have some great grandchildren too.

Gram: Well I mean, you know, they (I interject with "oh, oh") the grandchildren are great.

Me: Oh, oh. (We laugh together.) (pause) So, what do you do on a typical day?

Gram: (long pause) On a typical day, I like to go out in the yard and work in the, yard, in the flower beds and things. And uh, also I, do my housecleaning and cooking for the meals, for three meals everyday. I don't do much baking. (pause) Ohhh, I ( I unintentionally cut her off saying "What do you doand then I stop as she continues her thought.) work in the yard and cut the grass (pause) plant flowers. I do embroiderying and crocheting.

Me: So what do you do just to relax?

Gram: (smiles) Watch television. (soft laughing)

Gram: (pause) Yup. (She talks very softly.) (pause) Or I sit out in the sun and (long pause) mmm hm.

Me: So what did you do today?

Gram: (long pause) I went to, nutrition center and, uh, we always play, bingo there. And we get a wonderful fo (cuts herself off from saying food) meal. And we have great relationships with each other, with elder, older people, ya know?

Me: Um hm.

Gram: The people are all retired people and, uh, very friendly and nice. We play bingo or we play cards and (pause) we chance things off for that people bring in. They, um (pause) Now what do we play? (softer, as though she is talking out loud to herself). We playI don't know if it's bingo or what it is. It's one of thosecardswe have a card. It's like a bingo card and we win the prizes. (pause, speaks softly) And uh I don't know what else to say. Everybody's very friendly and (long pause) yeah we play Solitare while we are waiting to get our meal which is very good.

Me: Yeah, I love Solitare.

Gram: Yeah.

Me: So how is the nutrition center? What's good about it, what's bad about it?

Gram: Well, it's wonderful. Um, we we get picked up by a bus driver and they take us right to the center which is in the Burnadee May..um, (She says this last part to herself quietly, trying to think it over) now what is it? It has to do with the serviceBurnadee May

Me: The legion center?

Gram: Yeah, the legion. (She says this loudly.) Burnadee May Legion on Marshall Street. And they, did I say they take us, they pick us up by bus? (I nod my head yes.) And they we have a wonderful meal, and they like I say they play bingo or solitare and different card games. And everybody is very friendly and nice. They're older people.

Me: Mmm hm.

Gram: And uh the food is very good. We get a wonderful meal and they, then they bring us home on the bus and the whole, all we do is pay $5 a day, and that's what we get. We get the transportation and we get the meals and the camaraderie and. It's very nice. They're all nice people.

Me: Um hm.

Gram: And when people have a birthday ya know we sing happy birthday and different people bring their embroiderying and we play cards. It's just wonderful.

Me: You're lucky to have that.

Gram: Yes we are.

Me: So you mentioned the food(Cut off by Gram)

Gram: For $5 a day.

Me: Yeah, you mentioned the food and that it's really good but inexpensive and that it's really really good(Cut off by Gram)

Gram: Oh, it is good.

Me: So what did you eat there today?

Gram: We had roast beef, potatoes, I don't remember what kind of vegetable it was (She says this softly to herself and then gets loud), oh it was peas! And uh, we have coffee or tea or milk. Whatever we want to drink. We have a bread or a roll, and uh, we have dessert.

Me: And what do they do with the left over foods?

Gram: I don't know. Umm. (pause) I'm trying to think. Oh you have the, if you want to you can buy one of the leftovers ya know when, if they have extras.

Me: Um hm.

Gram: You can buy a a meal to take home with you, and uh, I'm I really don't now what they do with (She says this softly), but I think that's what happens to most of it. If umm, if they know of someone that's in the hospital I don't know if they take them, I don't think so, I won't say.

Me: Um hm.

Gram: That they uh do that with them, but they're, they uh they're always used up. All the meals are used up. Everybody likes them. The food is very good.

Me: Do they sometimes give you the bread to take home for the(Cut off by Gram)

Gram: Oh uh they have (She says this loudly) bread, they bring, different, oh, yes they have, I don't know where they get the bread but they get the bread at a low price and if you want any you can have it. You don't have to pay for it and also they have um (pause) I can't think of it (She says this softly)oh, people bring in the prizes for the bingo. We bring in canned foods or whatever we want to bring in. And uh, that's for when we play bingo and win a prize. And uh (pause) some people bring a little of their embroidering in and do it while their there, ya know cause it's it's a wonderful thing and the bus takes us home (long pause) And some people have things that they don't want anymore, and, uh, they donate em to the um (gets softer until she says) nutrition center. And somebody's in charge of selling them. And they're very very low prices ya know, like dishes that someone don't want or jewelry, um all kind of things that you need around the house.

Me: Um hm.

Gram: And you, it's very inexpensive. And the things are very nice and clean and really good. It's a very wonderful place. The people are all good to each other. A lot of people are single cause we're older ya know and they've lost their spouse. And um, that's what most of them are, single elderly people. (pause) And they're nice people. And it's at the legion home. And that legion home was uh, its its called the Burnadee May and I eh Martin May was the one man and the Burnadeen was uh, (pause) it was Henry Burnadeen and he was an only child and he was uh, cousin, of my husband, Tony Rossi. (pause) and uh, it's just wonderful. They have all the, the people have clothes that they don't want anymore and they're all nice and clean and everything and they sell them. They're very very inexpensive. It's just wonderful. But the meetings are held at the Burnadeen May Legion Home. And we get a wonderful meal they're they're uh toilet facilities are very nice, very spic and span. And like I said we play cards or some of the people bring their embroidering and it's really nice, they're very nice people and they(She talks softly as she trails off.)

Me: You're fortunate to have that.

Gram: Huh?

Me: You're fortunate to have that.

Gram: Oh yes. We are very fortunate. I'm sorry I didn't know about it sooner. Gram and

Me: (laughing)

Gram: And uh the Burnadeen May the boy Henry Burnadeen was a first cousin to my husband Tony. Yup. (long pause)

Me: Ok. Now we're gonna move on to more of questions involving like illness and going to the hospital and stuff. (She interjects with "oh.") Is that ok? (I know, I'm so eloquent.)

Gram: Um hmm.

Me: Have you ever been in a hospital?

Gram: Yes. Warren. Warren Hospital in Phillipsburg.

Me: Why did you have to go to the hospital?

Gram: Well I had that aneurism but I had my babies also in the hospital. I had three babies.

Me: Mm hm.

Gram: And that was Warren Hospital. And uh, the aneurism was really something because I was unconscious for (pause) was it several days. And it's uh, (pause) there's a lot of people that don't survive those things, and uh, I got the best of care, and uh, I feel like I never had it. Yup, I feel real good.

Me: So how would you describe an aneurism? What is an aneurism to you?

Gram: I don't know. I know that I was unconscious and I've got several ummm (long pause as she lifts her shirt sleeve and pant leg to show me deep purple, fist sized bruises) bruises, marks on my arms and legs, and uh, (long pause) I don't know much about it (pause) but I had the best of care at Warren Hospital. (Again she talks very softly.)

Me: That's good.

Gram: And I'm, I feel like I never had it. (I politely chuckle in the background) Like I never had it. But many people do not survive but I was very fortunate.

Me: My next question although you already answered it, how was your care at the hospital?

Gram: Wonderful. Wonderful care. Yes, the food was good. They took good care of us. If we had a problem, we'd ring for them and someone was right there. Yes. It was very very very good.

Me: So what do you think about the current medical care system?

Gram: What is it?

Me: The current medical care system, how do you feel about it?

Gram: In the hospital you mean or?

Me: Yeah, and just in general.

Gram: Oh yes. (very definitively) Oh I think it's available at a very reasonable price, and uh, very very effective. Yup, and uh, (long pause and she never finishes her thought)

Me: So what illnesses have you suffered from during your life? (pause) You mentioned the aneurism, have you had any other, illnesses have you been sick for anything? (phone rings) Up, your phone.

Gram: Oh that might be about my hair (I say "your hair" simultaneously). Yeah.

Me: Do you want me to answer it or would you like to answer it.

Gram: No I'll answer it.

Me: Ok. (I hand her the phone from the receiver.) (She asked me to cut out the phone conversation from the interview, but it was my dad calling to make sure that everything was ok and that her house was warm enough for her.)

Me: Ok. (I exhale heavily) Oh, we were talking about what illnesses have you suffered from during your life. You mentioned the aneurism, (Gram interjects with "see that") have you been sick for anything else?

Gram: Oh Hope, (She says this quietly and sadly as though she is going to continue with her thought, but she never finishes.)

Me: It's fine, take your time, we're in no rush. (long pause)

Me: Anything else ever give you pain?

Gram: I don't remember Hope? (Again she says this very quietly and sadly.)

Me: It's ok. (I can tell that she is upset and getting distressed.) (long pause)

Gram: No I've been, I've been very fortunate. I don't think I, I don't remember anything (When she said this it sounds as thought she is crying, but she wasn't.) that I, I was never in an accident or anything. (pause)

Me: How about your knee surgery? You had surgery on your knee.

Gram: Oh yes, I had surgery on my knee and uh,

Me: Do you remember how long ago that was? It was uh, a little while back.

Gram: Oh it wasn't too far back. A couple of (pause)

Me: Don't worry about it, (She interjects with "yeah.") don't worry about it. It was a couple years ago. (She agrees by saying, "Yeah a couple years ago.")

Gram: But um, the thing of it is, it it I still had pain. It wasn't that effective as far as I was concerned because I, I still have the pain in my knees (I interject in agreement by saying, "um hm.") and then uh, (long pause and then she softly talks) I can't remember anything else about that.

Me: What about arthritis? Do you suffer from arthritis?

Gram: Um hm. Yeah that's abut I take a lot of medicine and I take it regularly and that eases it somewhat but there's very little uh, easing in the knees. The knees are still very painful.

Me: What is like taking medication on a regular basis?

Gram: Well

Me: Because you take quite a few pills.

Gram: Yeah that I, I just, I don't know what they're all for. (I politely laugh again.) But I feel wonderful. I feel wonderful and I I've never had any, umm, ya know, I have my appendix and tonsils and adenoids and. No I, I think I'm doing very well for my age.

Me: I agree. How old are you?

Gram: I'm eighty-five.

Me: You look great gram.

Gram: Yup, I'm eighty-five and uh, nobody believes I'm eighty-five. But I I never have any that the only bad thing I had was the aneurism and I don't even know what causes that. (slight pause) Some people don't survive.

Me: Yeah.

Gram: And uh, I did all right.

Me: Do you remember anything leading up to the aneurism. A lot of times people have a hard time remembering, (She says, "yeah.") events that go on right before or right after they have (She says, "uh huh.") a major illness like that or a major surgery. Do you remember anything leading up to or after that?

Gram: No I don't. I uh, I was going out to mail a letter. (slight pause) Well I was going to the hospital, I think for some kind of a checkup or something and um I I went to put the letter in the mailbox and I knew that I was gonna drop the letter and pass out at that time but several, couple people were with me. Your father was with me and I forget who else was going to the hospital. They were taking me for a checkup but in the meantime I passed out. And that's when I was in for a couple of days that I didn't know about.

Me: Um hm.

Gram: But I feel wonderful now. Except I still have pain in my knees.

Gram: I don't know why I can't get rid of it but everybody else that has surgery on their knees they still say that they have pain. So I don't know why that happens but there you are, I walk with a cane. That helps.

Me: So when did you have your aneurism?

Gram: It was not too back, too far back, let me think I don't remember what month it was. It was it, it was within the past six months but I don't know exactly when it happened.

Me: So relatively recently?

Gram: Yeah your dad might remember when it was cause (I say, "ok.") ya know I don't know what to say but it was (pause)

Me: That's alright, don't worry about it.

Gram: I'm trying to think (said as though she is talking to herself.) But I survived it. I understand that a lot of people don't.

Me: You're remarkable Gram.

Gram: Well I must've taken good care taken care of myself.

Me: You always said you were never going to die. (soft laughing)

Gram: I'm going to live forever. (soft laughing)

Me: Yeah. Have you experienced any changes since your aneurism?

Gram: Any what?

Me: Changes since your aneurism?

Gram: No, no I feel just like I did before I had it. Cause I got such care I'm sure. That's all part of it, the doctor took such care of me, of course, my knees hurt me so I don't know if that had anything to do with it. But I, I've never had any major surgery. I've got my tonsils and adenoids and my appendix.

Me: You're doing pretty well for yourself Gram.

Gram: Yeah I've never had a broken leg or a broken arm or anything yeah. I always tried to take pretty good care of myself.

Me: Have any of your close family or friends suffered from any illnesses? And has that impacted you in any way?

Gram: In what?

Me: Has any, have any, Did any of your close friends or family suffer from an illness?

Gram: Yes.

Me: Any that spe, sticks out specifically.

Gram: Well, (pause) my brothers were heavy smokers, and they're all gone. They died. And I, that's the only thing they ever said could have caused it. Was heavy smoking. All three of them. That's the way. (pause) My mother died when she was, (whispers) I forget how old she was. She had a goiter in her uh, throat, and, uh, (pause)it didn't show much, but she used to choke a lot. And then she decided to have it operated on, but uh, she died during the surgery. It was too far gone, it was bigger than they acc (stops herself from saying accounted for) thought it was, and she died. And my dad he just died and he got real, very old, I forget how old he was, 80 something. (long pause) (She whispers.) That's all I can think of. (long pause)

Me: What is your relationship with your family like?

Gram: Perfection. (I softly laugh.) Yeah. Yeah, I think uh my relationship with my family, I like all my relatives, and they seem to like me, (slight pause) my nieces and nephews and grandchildren and cousins, we were six kids of us yeah I was one of 6 children that was born to my mother and father. (pause) And they had children and we all get along fine.

Me: Has your relationship with your family changed over the years?

Gram: No, now. when, now that I'm older, they're older, (talking quickly) we don't get around much anymore, ya know, we're pretty much confined to our own areas. And because we don't drive a lot of us don't drive anymore, and that's a big handicap. To go anywhere, you have to depend on some else. But, uh, (slight pause) yes, we have a there's a lot of children in our family. My brother Donald he had, (pause) (I can't make out what she says heresomething and then kids, maybe saying 5 kids) I don't know how many he had, but he had most of em. But all of em, all my relation had children. And grandchildren. (pause) Yes. (long pause) But I'm surprised that I'm living this long. Of course, the only handicap I have is that I can't drive anymore. I don't want to dive (She says this louder) (I interject with "um hmm.") ya know, Not, there's too many cars on the road. They're going too fast. I don't have to drive, I can manage otherwise. Like I say we go on the bus, or somebody else does the driving (monotone, sad-like voice). (pause)

Me: What is your relationship with your children like? Like Tony, Johnny, and Paula?

Gram: Fine except that Paula lives so far away, I don't get to see her much. But uh, my kids have all done well. (pause) They've all done very well. They have nice marriages and children and. (pause)

Me: Do you see Tony and Jim on a regular basis? Because you mentioned how Paula was far away.

Gram: Oh, I see Johnny. Johnny I see him every day. That's such a fortunate thing. But Tony, and Tony comes down quite a bit, well Louise is a nurse. His wife is a nurse. And uh, of course Paula wants me to come out there, ya know and, I plan to go out.

Me: It's nice to go out and visit. (She says, "yeah.") You always come back with a nice tan. (She says, "yeah.")

Gram: Our family have always been very close with each other. I can remember when I was a little girl. My mother and father were always close with their relation. (I interject with "um hmm.") And uh, we we always had picnics together, and no, when I was little, not many of us had a car, (I say, "yeah.") but uh we used to go to each others house and have picnics andyup.

Me: And we were lucky, uh, Ethan, Owen and I were lucky, because we lived so close to you. (She says, "yes.") We spent so much time with you. (She says, "yes.")

Gram: Yes, that's wonderful, that's the best thing. Family, means the most to me. Yep, family is the the big wonderful thing. Yup, I remember when I was, uh, was it before I was married? I uh, was a long distance telephone operator, and I worked in Easton, and during the war, we were transferred down to Virginia, because they were so in need of telephone operators, that we went down there, and they paid for our, uh, expenses. And I was, it was a privilege to go down and work there, ya know, (I agree with "um hm.") because they couldn't get enough operators, they had to got em from different states, to go down there to Virginia that's where I went. Yes, and they did right by us, they paid our, for our transportation and We lived in a home. Some some of those elderly ladies rented rooms out to us, the telephone operators. They were all a nice, decent bunch of people the telephone operators were. Yep, that was very good.

Me: Do you remember any stories of Ethan, Owen, and I when we were children?

Gram: You?

Me: Any good stories about us? Yeah, and good stories maybe we don't know about? We were too little?

Gram: Oooh, you were the dearest children, (pause) yes. See, children need a lot of attention, and some people don't seem to have, the time for all the attention that they need. But they never went without. They always had the necessities and a lot of the, (pause) fringe benefits. That's a word that, some children got some things, and some children got other things, and some children didn't get much of anything. But, uh, we all survived, and that's what I say. If we hadn't done things right, I mean, with our going to church and knowing what it's all about, to being good to people. And not just family but friends and neighbors, but friends and neighbors were always friendly and they were there for you when you needed them. (slight pause then she talks softly) Yes it's a wonderful world we live in, I'll say that.

Me: As you've gotten older, has your religion changed or your faith changed in your religion?

Gram: No, no. It's the same religion. (pause) I'm a Lutheran. Of course I don't get to church as often as I'd like to because I don't have the transportation. ( I say, "um hm.") I don't drive anymore. And uh, but I still have, the faith that I was brought up with. Yes, I and I think my father, and my mother died when she was only 41, and she left my father with six children, boy girl boy girl boy girl. (I softly chuckle.) And he stayed uh, with us all of us, he kept us all together, and he went to work every day and his mother, or his mother in law would be looking after the little kids. And then as the kids grew older, the older kids looked after the little kids. But my mother was only 41 when she died. (pause) And that was a terrible that that, her name was Paula, that's who I named my daughter after (She says this softly.). Yeah. We had a wonderful family. We did for each other, (pause) and we survived. (long pause) I don't know what else to say, but like I said, when we were little kids, we didn't have a car. We walked everywhere we went. (I agree with "um hmm.") Because, well, there was a core, a store on every corner. So we didn't have to go too far to get our goodies, and to go shopping. And uh, of course, there were busses running, they helped out. And families did for each other, neighbors helped each others out. When there was someone sick, there was always someone, to help out. (slight pause) Yup.

Me: Did you take care of anyone when they were sick?

Gram: Not really. Only my children I took care of. But uh, I used to go visit people who were in the hospitals or, or a, in their homes and were sick. I, and I always sent Christmas cards when the boys were overseas ya know at Christmas in the service. (I agree with "um hmm.") I used to send cards Christmas cards to all of the names and address that were in the newspapers. And I sent Christmas cards to everybody I knew, and birthday cards when I, and it pleased me to do that. (pause) Yup. I always, like I say, I used to go run errands to the stores for the neighbors, and uh, the one time when I went, I had two bottles of milk and a loaf of bread. And I fell. And one of the bottles broke, and I cut my hand, and I still have that big scar. (She shows me her hand with the scar, but I can't see the scar.)

Me: How old were you?

Gram: Oh, I, I think I was about 11.

Me: Oh, just a little girl.

Gram: Yeah. But we always did for each other. Neighbors did for everybody, in the whole block. That was the wonderful thing about it. Now today, (pause) you hardly know all your neighbors cause they're form different parts of the country and. When I was a little girl, everybody lived in the same house for as long as they lived. (pause) The, the, as long as the parents lived. Until we grew up and went on our own. And neighbors were like family. Wonderful.

Me: Ok we're nearing the end of the interview, a couple more questions. (She says, "uh huh.") When people get older, they sometimes have a hard time remembering little things (She says, "oh yeah.") that happened during the day (She says, "that's right."), and sometimes when it gets nighttime people forget.

Gram: Uh huh.

Me: That's common.

Gram: Oh yeah.

Me: So have you experienced any memory loss, or has it increased as you've got older and what does that feel like?

Gram: Yeah, I think I think I have some um memory loss. Uh, I know, when somebody says, asks me a question about what happen a while back, I can't remember everything. And they'll say, well don't you remember when we did this or that, and I say, no I don't remember that. But I loved going to school. Ya know. (I say "um hm.") And some of the kids would make believe they were my pupils, (I softly laugh.) and and ya know, I was the teacher, but uh we were always busy doing something. And and some of the things we did didn't cost anything, but uh everybody took care of each other I can remember growing up. Neighbors were like family. (She says the following lines quietly and softly.) That's one thing I'll always remember, how neighbors looked out for each other. And we used to dress up every Halloween and they neighbors and they'd give us little token ya know, like an apple or some candy and. It was just wonderful. If somebody had a swimming pool, they left us all go in the swimming pool. And we walked everywhere we went. Cause nobody had a care that was during the depression. (She gets progressively louder.) But uh, we we used to walk all the way from P'burg all the way over to Easton. Hmm, oh everything, it was just wonderful being, growing up, (She whispers the part of this last line.) it was a wonderful thing.

Me: Do you have any favorite memory? Either from childhood or throughout your life, or even interacting with our family, specifically, anything (She interjects with "well, the way") that sticks out in your mind?

Gram: (She speaks quickly.) Well, the way that people used to let me wheel their babies around the block, ya know, that was a great thing, and I didn't realize how much it meant to them, ya know they were able to get work done, and they trusted me with their little babes and I thought that was great, and then we also babysat for them and. Yeah we used to do for each other, and at Christmas time if there were someone in the neighborhood that we knew weren't going to have any Christmas, everyone chipped in and did something for them, and uh, that was a wonderful thing, and just like going to school. We used to go together. We never had to go alone because there was always a couple more that wanted to walk with ya, and that made it nice. (slight pause) And, uh, (whispers) just wonderful. I loved going to school. (She gets a little louder.) Yeah I always thought of being a teacher when I grew up, (She whispers again.) but I didn't. I didn't make it. I became a long distance operator. (She gets a little louder then goes back to a whisper when she can't remember.) And when we went down to Virginia, to handle those calls, because boy, those, their, ummm, oh what do you call that, where you put the things in

Me: I don't know

Gram: Oh, what the heck. (She says this loudly.) The cir circuits.

Me: Oh.

Gram: (She says this loudly.) The circuits. Now, in Easton, there were not that many, but there were enough for the area. But down in Norfolk Virginia, from on end of the building to the other was uh, the uh switchboards, and they had regular, uh, direct calls to California, and places long, ya know far away. Were as locally you didn't have that, just, a certain distance you could go. And then you had to call one, state and they would transf, (She cuts herself off from saying transfer and never finishes the thought.) but down there during the war, boy, all those operators, there were operators transferred to Norfolk Virginia from all over the east coast. And I as so happy to be able to go and do it. Yup because the navy was there, all the services were right there, because it wasn't too far away from (She whispers.) Washington, or where in Virginia Norfolk. (She is so quiet it's hard to hear her.) Yep, I can't think of anything much. Of course after I go to sleep I'll be..

Me: Are you tired?

Gram: No. (She says this loudly and laughs.)

Me: Because we can end, we can end it, (She says, "no hunny.") you've answered all of my questions very well, um, (She says, "I hope so.") better than I thought, gram. (She says, "oh good.") I learned a lot about you.

Gram: That makes me feel good.

Me: Yeah, I learned a lot about you. (She says, "yeah I.") You really helped me out with this.

Gram: Yeah when I think about it ya know I used to go, (She talks very quickly.) people always had me going to the store for em. But ya know they used to say, when we had so and so go to the store, they dropped the bottle of milk and the milk got broke, but you know that was a dangerous thing to do anyway to have to carry a bottle of milk. (I say, "umm hm.") But uh, we went, we used to go to the store for every neighbor. And they didn't give us any money, but they'd give us a cookie or something, ya know? And we loved that. Or a lollipop, just a lollipop. We used to scrub the sidewalks for em and . That's what I say when we were kids the neighbors were like family, and now it's so changed, you don't know who lives next door to ya now, with all the um people that are moving around.

Me: Are you close with any of your neighbors?

Gram: Oh yeah. I'm, I'm not, I'm not that close, (I say, "umm hmm.") but I'm very friendly and, and I know when I had that problem that I had to go to the hospital, a couple of them ran to help the family ya know, and that's how it is, if somebody's having a problem the whole neighborhood goes to help out. Yep.

Me: So, which, which neighbors are you close with, would you say?

Gram: Well, most of them all work, in this day I age, and, uh, I know they always say if you need anything call me, and, uh, it's,it's wonderful, ya know in this day in age, we don't have much time, we don't sit on porches, (She says the next part quickly.) when I was a little girl growing up the big thing was to get out on the front porch and sit on the rocking chair. And all the neighbors were on their porches. But now people don't do that. Everybody is driving here and there and everywhere. (slight pause) But they're there for you if you need them. (she whispers.) Yep.

Me: Does your neighbor still paint? Cause remember, she painted your house? (She looks at me kind of confused.) The painting over there.

Gram: Oh, that lady over there?

Me: Yeah.

Gram: Yeah, on the corner. (I interject with, "do you, what's her name?") I haven't seen her lately. I think they're away right now. But um, (She says quietly.) well I don't know what, you know, it's, as you get older, you don't get around much (She says this all in a sad voice).

Gram: She was always nice.

Me: Do you remember her name?

Gram: (slight pause) Over here, where she painted.

Me: Yeah.

Gram: I'm trying to think of her name. Uh Hoffman? I don't know if it's Hoffman or Hockman. Hamlin! Hamlin (She gets very loud then quiet again) I think her name is.

Me: Yeah, that's right.

Gram: Yeah, Hamlin.

Me: Yeah I couldn't remember it. I knew you'd know it.

Gram: But whenever a neighbor was in, in, trouble, the whole neighborhood would help out, ya know? They'd run to help out.

Me: How long has she been your neighbor?

Gram: Oh, ever since we lived here. She was livin over there in that house and, uh, yep(pause) And uh, (She whispers.) I can't think of her name, across the street, she was always there for me. But uh, we used to babysit different kids, yeah, (pause) and Mrs. Bolcar, you know, it's it's strange, but there's so many widows, ya know, so may women who have lost their husbands and I guess maybe it's because the husband's out in the, (slight pause) cruel world more than the woman. She's at home where she's safe. But uh the neighbors are all available if you need help.

Me: Well it's good to know. Is there anything else you would like to tell me about your life, or, (She says, "ohh I don't know.") about illness, or anything you want to talk about to conclude with?

Gram: No, except the fact that I was divorced, ya know. Because my first husband was, involved with another woman, and I divorced him, and then as my children grew up I met Carl Rossi, and he loved the kids and they loved him, and he was a widower. But uh.

Me: You have good memories with him.

Gram: Yeah, but he's gone now. But they smoked, ya know? And they're the ones that are gone. They were such heavy smokers. (pause)

Me: Like Uncle Duker? (She quietly says, "yup," and I can't tell if she remembers or if she is trying to remember and can't.) Remember when we'd go visit him, and I'd bring that little dog?

Gram: Yeah. Yeah.

Me: That little barking dog.

Gram: Yeah, Uncle Duker. We were always a close family, even though we lived in different cities, like, in Easton and Pensylvannia and Harmony. Steckles, Steckles had Steckle Concrete, that was daughter, my sister Dora was married to Ken Steckle who owned the concrete company, and, and then, the boys all worked for him. My brothers worked for Steckles. (pause)

Me: Mmm kay, well thank you very much Grammy, I appreciate it.

Gram: You think that's pretty good?

Me: I think it's great.

Gram: Yeah, I tried.

Me: Yeah. You didn't have to try at all, your stories about your family was (She says, "yep.") perfect.

Gram: I used to babysit for all these people, and they let me wheel the carriages and. But we were close neighborhood, ya know, as we were growing up. And people always did for others. It it was amazing, when someone was sick everybody took food to them. That was a great thing. Now everybody shifts for themselves mostly. But times have changed. Not only have times changed, the people have had to change because of the times changing.

Me: So do you think neighbors react differently to sickness nowadays?

Gram: Well, they, (pause) yes. I think because well, the thing of it is, the doctors and the hospitals are close by, and they don't have to rely on their neighbors, ya know, they get attention from the doctors and the hospital. But when we were growing up there was very few doctors in the neighborhood, not in our, in the neighborhood we had to walk when we went to the doctors and, (slight pause) I think that had a lot to do with it because there weren't that many doctors in the area. But as the place gets bigger, the population gets bigger and(She trails off.)

Me: Do you think families are still as involved as they used to be, with helping people that are ill?

Gram: Oh yes. Oh yes. Cause I remember when I, when I, ya know, I had to go to the hospital, oh boy I got so may get well cards and everything and that lady I think she ran over, and the lady across the way ran over. I know that young girl came over cause as I was going down, ya know, yes

Me: How has your family helped you (She says, "oh.") through your illness?

Gram: Oh, they're they're always here, there for me, (She says the first part, about her dependence quietly but the second part, about how she helps us, loudly.) and and I'm there for them. (pause) Yep. Unfortunately in our family the men have died off, and my,my sister in law Josie, her husband's dead. I forget how may kids I think, they had six, my brother and her. And then Mary, that's my brother Charles' wife, she's still living. (slight pause) I mean it seems like the women outlive the men, and I think it's because the men are out in the cruel, cruel world or whatever. Well they have to do things ya know, that (slight pause) to make the world go round. (pause) But uh, people are there for ya cause I know when I was falling, I knew, that the woman across the way, over there, I heard her holler, "she's falling" this one that's across the road. Yep.

Me: It's good that you have neighbors that are helpful.

Gram: Yep, they're very attentive. (pause)

Me: Ok, well thank you very much gram.

Gram: Well I hope its good enough.

Me: Perfect.

Gram: Perfect, oh Hope.

Me: I couldn't ask for a better person to interview.

Gram: Hahaha, well, dear Grammy Julie, God love her. If there ever was a lady in this world it was Grammy Julie. (I agree with "umm hmm.") She was always dressed so nice and made up her hair and she was a, just perfect. Perfection. (pause) Yep. (pause)

Me: We had a good relationship with her. We were lucky.

Gram: Ohh God love her. Adorable. Yep.

Me: All right gram, (She says, "oh I hope") I'm gonna pack up and head on home. It's starting to get (She says "yeah.") late you might want to go to sleep.

Gram: Yeah hunny.

Me: So you might wanna..

Gram: Oh no.

Me: head to sleep soon. It's getting late.

Gram: (laughs)