1

Alzheimer’s Narratives

Duke University Baker Scholars

Holly Quivera

12 December 2016

2

In memory and honor of Ms. Marjorie and her friendship with my mother

Thank you for both for teaching me the power of communication, love, and friendship

3

Preface:

The first time I met Ms. Marjorie, I was five years old. At such a young age, there was no

way I could know how much joy, love, and encouragement she would bring to me and my family.

As I grew older, I became a witness to her incredible talent for making people feel special and

loved. An elegant and dignified woman, she stood at the heart of our church: donating funds for

mission trips and families in need, leading a women’s prayer group, cooking dinners for church

members, and so much more. She lived with grace and love in her every thought and action.

My family grew especially close to Ms. Marjorie after a fire ravaged part of our home.

She was there to offer help, guidance, meals, and love every step of the way. Several years after

our home had been restored, we received a call that Ms. Marjorie had fallen and broken her hip.

Having been diagnosed with Alzheimer’s disease, living alone, and now with a broken hip, she

took my mother’s hands in her own, looked at her and said “will you do me the honor of looking

after me, please?” For four years, my mother became one of her primary caregivers. Spending

Thursday through Sunday nights at Ms. Marjorie’s house, my mother learned about her past, her

likes and dislikes, and how much they had in common. Their relationship flourished in those last

four years and it was evident to each and every one of us that they needed one another.

Alzheimer’s disease changed a lot about Ms. Marjorie. She often became confused about

her surroundings and the time period, she would ask the same questions time and time again,

and on some days, she would even confuse me with my sisters. But there were times when it was

not easy to see that she had Alzheimer’s. On these days, she would put her word search book

down and ask me about my life and how I was preparing for college. She would ask about my

friends by name and if I told her I was having a bad day, she would encourage me to find the

4

good in every person and in every situation. As much as Alzheimer’s had changed and confused

her, glimpses of her former self remained up until her passing.

I first decided to write about Alzheimer’s disease in my Writing 101 class. Ms. Marjorie’s

disease had progressed quite a bit by this time and her actions and comments personified so

many of the features and symptoms of Alzheimer’s that I had researched. The more I read, the

easier it became to see how much of her had been transformed and how much of her would

continue to be altered and eventually lost. I knew that already many of her cognitive functions

were deteriorating, but it was disconcerting to see how intact and unbroken she was on the

outside. Seeing her sitting on her couch in her pink jumpsuit, wearing red lipstick, and doing a

word search made it difficult to imagine how much of her had been changed.

It was during this time that I began to focus my attention on the relationships around Ms.

Marjorie. I did not want to think about how she would continue to change or about having to

face the possibility of her not recognizing me. Focusing my attention less on Ms. Marjorie and

more on her family and caregivers allowed me to see how relationships and interactions are

often strained or broken due to Alzheimer’s disease. My mother, one of her primary caregivers,

felt frustration, love, anxiety, and worry over Ms. Marjorie every single day. Her family

members found it difficult to relate to her and express themselves about her, making them come

off as distant and even selfish at times. Even the prayer group she was part of decided to visit

less so as not to confuse or excite her. The toll that this disease had on every one of Ms.

Marjorie’s relationships was immense and heartbreaking.

As I conducted more research I realized that strained relationships and distancing of

family members and friends from the patient are all common consequences of Alzheimer’s

disease. For some caregivers and family members, the distance provides comfort and relief from

5

seeing their loved one changing as a result of this disease. For others, misconceptions about

Alzheimer’s keep them from understanding the disease, the progression, or their loved one.

Regardless of the cause, too many feelings of frustration and loss were going uncommunicated

by both the patients, the caregivers, and the family members.

I began to wonder: what could lessen their burdens and help them to express their stifled

feelings? One of the most powerful forms of communication I came across was written

narratives, in which patients and caregivers alike could be free to express their experiences past

and present as a result of the disease. I decided to focus my research on the benefits of

communication and interaction. Through the following guide, I hope to shed light on the

isolation caused by this disease, demonstrate the need for compassion and understanding from

healthcare providers, the public, caregivers, organizations, and family members, and to

ultimately provide caregivers and patients with a source of comfort by detailing the importance

of expression and communication.

Introduction

You have just been informed that your loved one has Alzheimer’s disease. Before you

can even begin to process this, the doctor begins to define the disease as “a progressive,

degenerative brain disorder that occurs gradually and results in profound memory loss, changes

in behavior, thinking, and reasoning, and a significant decline in overall functioning and ability”

(Snyder 2). The doctor then goes on to describe the breakdown of synapses in the brain and the

build-up of protein plaques that are characteristic of this complex and devastating disease. As the

doctor makes these comments to you and not to the person he is diagnosing, you can already tell

the isolation of diagnosis is setting in; your loved one is being simultaneously diagnosed and

excluded by their doctor. You nod as though you fully understand the scientific terminology the

6

doctor is using as he quickly describes the implications and symptoms as if he were going

through a mental checklist. As the doctor stands and places his hand on the door handle, he turns

and asks if you have any questions. You can tell that he is rushed and you have just received so

much information in the last ten minutes that you have not fully processed it all, so you politely

say no and thank him for his time. The nurse then comes in and gives you a pamphlet that

outlines more symptoms of the disease, the number of people affected nationwide, and a helpline

number and link to the Alzheimer’s Association website. As you leave the doctor’s office, you

are overcome by a whirlwind of emotions and questions that you were not able to express while

you were in the examination room. You put your arm around your loved one as you both head to

the car and each of you silently wonder what awaits.

In this scenario, as in many others, a complicated patient-doctor-caregiver relationship

has been established in which there are feelings of uncertainty, confusion, and frustration. While

the doctor may feel as though he conveyed the information effectively and efficiently, the

caregiver may have a number of unresolved questions and emotions, and the patient may feel

altogether forgotten or ignored. For patients of Alzheimer’s disease, it is vital that they receive

the care, attention, and doctor-patient interactions that will allow them to continue to be a part of

their story and diagnosis for as long as possible. In order to address the problems in the diagnosis

and conversations surrounding Alzheimer’s disease, the stigma surrounding the disease must first

be acknowledged and addressed.

Confusion regarding Alzheimer’s disease

The stigma associated with Alzheimer’s disease stems in large part from a number of

misconceptions surrounding the disease. For many, these misconceptions arise from a heavily

scientific definition of the disease juxtaposed with a flawed image of an isolated elderly person

7

who is trapped in his or her unraveling thoughts and thus is unable to communicate with others

(Burke 34). The idea that Alzheimer’s disease should be linked to images of isolated,

uncommunicative, older patients is a dangerous misconception in that it leads to the notion that

the isolation of such patients is expected and thus a normal progression of the disease or of

simply aging (Alzheimer’s Association). If society, caregivers, and loved ones accept that

isolation or social abandonment of the patient are permitted and expected as a result of

Alzheimer’s disease or aging, then it becomes all too easy to dehumanize the patient by

disregarding their wants and needs and seeing them as little more than a combination of

symptoms.

Furthermore, while Alzheimer’s disease generally affects an older population, the disease

is not limited to the elderly and there have been many cases of people younger than 65 being

diagnosed. The Alzheimer’s Association refers to these cases as “early-onset Alzheimer’s

disease” and reports that an estimated 5% of the current 5 million people diagnosed fall into this

category (Alzheimer’s Association). Moreover, because Alzheimer’s disease has a progressive

span of two to twenty years, the rate at which a given patient’s symptoms change or worsen is

different for each person affected (Snyder 2). The variation from patient to patient of

Alzheimer’s disease should serve as an indication of the complexity of the disease as well as the

factors that surround it. There is no one standard for the way in which Alzheimer’s disease

progresses, therefore trying to apply a uniform analysis of its progression is a grave mistake.

Another prominent and incorrect assumption regarding Alzheimer’s disease is that of

equating Alzheimer’s disease to being senile. Using “dementia,” “Alzheimer’s,” and “senile” as

interchangeable terms causes confusion and an overall misrepresentation of symptoms and

attitudes associated with these terms (Snyder 1). By using the term senile when referencing a

8

patient of Alzheimer’s disease, the implication that Alzheimer’s disease and related symptoms

are an expected part of getting older is further developed (Alzheimer’s Association). This then

causes further removal of the patient as a being, by shaping their identity into a number of

interchangeable diseases or terms. This assumption, or misconception, begins to strip patients of

their identity and place in society even before the disease has progressed. Making physicians,

caregivers, loved ones, and members of society aware of these misconceptions and incorrect

assumptions can help to minimize the large number of patients that are ostracized, dehumanized,

and forgotten by society because of the confusion surrounding the patients’ diagnoses. While

dementia, senility, and Alzheimer’s can intersect and overlap, with a patient sometimes

displaying characteristics of a combination of these diseases, it is important that they each be

distinguished as separate characteristics and addressed as such. The labeling of each individual

symptom and characteristic of these diseases can help to reduce confusion and the repercussions

of these misconceptions.

Yet, simply knowing about the stigma surrounding Alzheimer’s disease and

differentiating between different diagnoses cannot alone be the solution to changing the way in

which it is thought of or addressed by society. Acknowledging and understanding that the health

care system that is diagnosing patients and providing information about the disease needs to

undergo change is a crucial first step in mending the relationship between the physicians,

caregivers, and patients. The way in which the public thinks about and addresses Alzheimer’s

disease is a direct representation of the information that they are given by associations, news

sources, the media, and physicians. Rather than to continue to generate and accept these

misconceptions about Alzheimer’s disease, associations, physicians, and healthcare providers

9

need to review current approaches and programs available for caregivers and patients and

analyze and alter them to better fit the needs of patients, loved ones, and caregivers.

Limitations of current information and programs available to the public

The current literature surrounding Alzheimer’s disease is heavily scientific in that it

describes in-depth biological changes in the structure and functioning of the brain rather than

providing the patient with a true sense of what these changes encompass. Thus these scientific,

yet vague, descriptions simultaneously reduce and heighten the complexity of the changes the

patient and their families will undergo (Burke 29). Reducing a person’s life and experiences to a

series of biological changes strips them of their humanity and leaves a list of facts and symptoms

in their place. Furthermore, a great number of sources that address Alzheimer’s disease do not

fully expose the disease; rather, these sources attempt to give an overview of the symptoms and

progression. In doing so, the patients, caregivers, and loved ones then see a summary of the

disease and are not given a true sense of what the disease may mean for the lives of the patient

and their loved ones. This makes it easier for the caregivers and loved ones to separate or

disassociate the symptoms from the patient, thus not fully grasping the implications of the

diagnosis, how to approach the symptoms as they occur, or how best to give the patient the care

and attention they need. Moreover, when the caregiver or loved ones do fully realize the impact

of this disease and the way in which it transforms the patient, it is often a strong, emotional

shock. Therefore, while a generalized list of symptoms aids the caregiver and loved ones to

know what to expect, an over generalization of the serious and complex changes does not

adequately prepare the caregivers and loved ones for how to react to these severe and drastic

biological changes.

10

There are several associations and websites that attempt to provide a brief overview of

important characteristics of the disease. For example, the brochures featured on the Alzheimer’s

Association website cover a variety of topics such as “wandering,” “behaviors,” and “the basics

of Alzheimer’s disease.” Yet, they do not help to prepare the caregiver for the serious

implications these symptoms and characteristics may have. This is clearly exemplified in the way

that two different websites address Sundowning Syndrome, a key feature of Alzheimer’s disease

and dementia. While the Alzheimer’s Association describes this syndrome as “people with

Alzheimer’s and dementia may have problems sleeping or increases in behavioral problems that

begin at dusk and last into the night (known as sundowning),” the Alzheimer’s Foundation of

America states “sundowning is a dementia-related symptom that refers to increased agitation,

confusion and hyperactivity that begins in the late afternoon and builds throughout the evening.”

Although both definitions serve to inform the public, the language used can be misleading and

confusing. These definitions seem to portray this syndrome as though the patient is acting out,

misbehaving, or simply hyper, while in reality, the implications of this syndrome are far worse.

In her graphic novel depicting her life as she cared for her mother with Alzheimer’s disease,

Dana Walrath defined sundowning as “now sunsets sometimes bring a different kind of magic.

Black magic. Stories come alive. Newsreels from her childhood come back through the ether.

Phantoms appear.” In her excerpt, it is evident that beyond being hyperactive or misbehaving,

her mother is truly confused as she mixes her past with her present in an everchanging

combination of reality and fiction. By stripping the audience of these raw accounts, these

organizations are inadvertently masking the hardships and burdens that await.

Sites, institutions, and associations such as the Alzheimer’s Association, The Alzheimer’s

Foundation of America, and the CDC have been vocal about a need to destigmatize Alzheimer’s

11

disease and to create better support systems and programs for the patients, caregivers, and

families of Alzheimer’s disease. The Alzheimer’s Association website does have a number of

links and tabs depicting the different symptoms, myths, statistics, and risk factors as well as

having tabs according to the person reading the site at the time i.e. the patient, the caregiver, or

professionals and researchers (Alzheimer’s Association). While these features aid to put the

disease in perspective as well as address the audience according to their role in the disease, the

narrative surrounding accessible activities, events, and approaches available to the patient,

families, and caregivers are insufficient. Currently, a majority of the aid available involves

attending support groups, contacting hotlines, reading regular newsletters, and going to events

held at caregiver centers (Alzheimer’s Association). Even though these have been of great

service to some and are an important part of making sure the families, patients, and caregivers

have access to help, for many people, this is simply not enough. For the family members of an

Alzheimer’s disease patient, it can be difficult to find the time to attended support group sessions

or to go to events, talks, and caregiver centers. For some, these activities are simply not

accessible or realistic either because of transportation issues, a demanding job or career, or being

unable to find the time to do so.

Furthermore, while these types of events can be beneficial, it can be challenging to be

comfortable enough with the diagnosis of Alzheimer’s disease to speak or actively participate at

these events, especially if the diagnosis is recent (Post 15). If the caregiver or family member has

not had enough time to adjust to the diagnosis, how can they be expected to converse about the

process and actively participate in a public environment? Instead, help, comfort, and advice need

to be provided earlier on in the process. It is essential for loved ones, caregivers, and patients to

be able to express themselves before, during, and after a serious diagnosis, in order to truly

12

understand the changes that are occurring as they are happening and to attempt to create a level

of coherence, structure, and meaning amongst chaos.

How Alzheimer’s disease impacts caregivers

As the diagnosis sets in and the caregiver realizes that Alzheimer’s disease is now a part

of their reality, their own health and well-being may be affected. There is an immense amount of

stress surrounding the various implications of this disease and attempting to address or cope with

them all can be a terribly overwhelming process. As the disease progresses and the symptoms

worsen, it can be difficult for the caregiver to continue to face the challenge of seeing their loved

one battle this disease daily. As a result, the caregivers may begin to distance themselves from

their loved one; visiting and engaging less or altogether avoiding them. While such a reaction is

understandable, it can often result in further isolation of both the patient and the caregiver from

one another as well as from society. The patient may begin to feel more like a burden or that they

are defined by their disease. Likewise, the caregiver may feel that they are failing their loved one

by not being able to care for them and that they cannot talk to others for fear of being shamed. In

this way, more symptoms of stress, anxiety, and depression can arise from both the patient and

the caregiver.

Furthermore, once the caregiver or family member feels that they are not able to care for

their loved one alone, they may need to assess other options such as enrolling the patient in a

nursing home or providing an in-home nurse for the patient. Deciding on the patient’s living

situation is an important and difficult decision to make and often the loved one feels an immense

sense of responsibility and guilt surrounding the choice they make. For some families, this

becomes a significant difficulty because they cannot afford either option and must care for the

patient themselves, for others, finding the time and patience to stand by their loved one can be

13

too difficult a task. Either way, the caregiver or family member is left with an incredible amount

of hardship and difficultly in deciding what is best for the patient.

This is often further complicated by the patient’s confusion and at times refusal to accept

their diagnosis and progression. For a person with Alzheimer’s disease, it can be difficult and

defeating to have to resign their independence to a nursing home, in home nurse, caregiver, or

care from a family member. In accepting these changes, they know that they are resigning

aspects of their autonomy and independence to their disease. They are in a sense, adapting to a

sick role. Yet, for those with Alzheimer’s disease, the diagnosis and progression is often more

complex than just taking on an illness or “sick role.” Because Alzheimer’s results in the loss of

memory and basic cognitive functions over time, the mind and identity of the afflicted individual

will eventually cease to exist as they once were (Post 1). Due to the severity of the symptoms

and the drastic transformation of personality, isolation of the patient by the family and caregivers

occurs as it can be too difficult a task to face a loved one’s deterioration.

Furthermore, because there is no current treatment to halt or reverse the effects of

Alzheimer’s disease, it can be all too easy to resign oneself to the “nothing can be done”

mentality (Post 2). This is particularly difficult for the caregivers and family members of a

patient with Alzheimer’s disease. Once the disease has progressed beyond simply misplacing

items or forgetting to do certain tasks, symptoms such as Sundowning, hallucinations, confusion,

and violent behaviors set in and the caregiver may begin to feel the full weight of their loved

one’s diagnosis. It is during this time that the caregiver struggles with their feelings and emotions

and begins to feel trapped or guilty. If the caregiver has a family and career to attend to, it can be

difficult to find a balance that allows them to look after their loved one as well as maintaining

prosperous and appropriate interactions at home and in the workplace, but if the caregiver choses

14

to have a facility look after their loved one, feelings of guilt and seeing their loved one as a

burden also set in further trapping the caregiver into a state of conflicting emotions and inner

turmoil (Burke 39). The caregiver or loved one then become isolated by the disease in much the

same way as the patient.

Writing as an outlet

In the 1993 novel Scar Tissue, Michael Ignatieff, depicts one son’s everyday battle with

wanting to be with his mother, who has Alzheimer’s, and not wanting to see her disease

progress. He writes about the hardships of balancing her disease with his personal life and career

and the toll that it took on his relationships and interactions with others. In this heart wrenching

novel, Ignatieff embraces and conveys the feelings of isolation, anger, frustration, and loss that

come with having a loved one with Alzheimer’s beginning from the very first page:

I do not want to remember her last hour. I do not want to be eternally condemned to think

of her as she was in those final moments, when we held her hands, my brother and I, and

she fought for life and lost, her mouth stretched open, gasping for breath, her eyes staring

sightlessly up into the lights. That scene goes on and on, as if it will never end, as if some

unreconciled part of me still denies that it actually occurred. I still have days when

everything she ever was, everything she ever meant to me is entirely erased by the

memory of those great agonizing breaths, that frail body wracked with spasms, those lips

wet with blood. There must be some way to redeem this, some way to believe that the

banal heartlessness of it all was for nothing. There must be some way back to the

unscarred beginnings, when she was in her painting clothes, barefoot, sipping a beer,

humming to herself, happy and far away. That is how she should be remembered. That is

15

what I must rescue from her dying, if such a thing can be done. How do I tell her story?

(Ignatieff 1).

While Michael Ignatieff chose to implement the use of a character to tell the story of his

mother, this is certainly not the only way to tell of a loved one’s, or your own, experiences. In

choosing to tell another’s story, there is also a need to tell your own. The telling of this story; of

your story, enables you, the writer and/or the reader to understand yourself and the world around

you. Yet, for many caregivers and family members it is often difficult to decide when and how to

tell your story, especially when it involves a life altering disease. But by engaging your own

feelings and emotions, you are better able to relate to the feelings and emotions of your loved

one. The act of writing out your story thus allows you to expand upon your understanding of the

disease and your loved one. The act of expressing emotions, thoughts, and feelings throughout

the progression of a disease is then infinitely better than to stand by and watch your loved one or

yourself be swept away by your thoughts and loneliness (Post preface VII).

The act of writing and telling their stories can also help patients to qualify and describe

the emotions they may be experiencing leading up to a diagnosis. For many patients, being

diagnosed evokes the feeling of “taking on a sick role” and being defeated by an illness; the

absence of a diagnosis thus functions as a protection from the disease itself (Kilty). Patients will

often set up an “intimacy barrier” in which they attempt to minimize or lessen the severity of

their symptoms, refuse to acknowledge changes or limitations caused by their symptoms or

disease, and even outright lie about what they are feeling and experiencing and when they first

began to feel and experience these things (King). But what if the patient was given the

opportunity to define the disease in their own terms?

16

Every disease has a story; a set of symptoms, social stigma, progression, experiences,

etc. that are different for every person affected (Post 30). The way in which the disease is

affecting the patient currently is not necessarily the same way that it will affect them in the future

or the way that it has affected them in the past. However, by following the progression of the

disease itself, the patient and loved ones are better able to understand these symptoms and

changes and even the disease itself as well as the meaning behind having that disease (Kilty).

What does having this disease mean to me? How does this disease define me, if at all? Defining

the disease on one’s own terms can allow for a better understanding and even acceptance of the

disease (Kilty). The unravelling of the notions and outlooks surrounding the disease can also

allow the patient and the families to understand and combat the resultant stigma and isolation.

The way in which the illness unfolds is an integral component of how it will shape the

patient and those around them and having the opportunity and ability to express themselves

throughout these changes lessens the impact of the diagnosis of the patient for themselves, the

caregivers, and their families (Burke 32). In writing their emotions and thoughts throughout the

progression of Alzheimer’s disease, patients and caregivers are able to communicate and relate to

one another thus reducing any stifled feelings of fear or frustration. These shared experiences,

past and present, allow patients and caregivers to create works that give them a voice and

meaning beyond this disease.

Alzheimer’s Narratives

In the time following a serious diagnosis, such as that of Alzheimer’s disease, the patient,

families, and caregivers are often left in a state of confusion, isolation and disarray. With an

abundance of thoughts, worries, and uncertainties, it is easy to become overwhelmed and to stifle

those feelings for the sake of others (Kilty). However, what if the patient and those around them

17

could tell their stories as they are unfolding? What if they were able to describe their experiences

and express their thoughts and emotions through the use of written narratives? The ability to

narrate one’s life leading up to a diagnosis, the moments after being diagnosed, and the time that

follows is a crucial factor in finding one’s own voice and identity in the midst of uncertainty and

chaos (Kilty). Written narratives provide a powerful outlet for people to communicate, listen, and

understand one another. Moreover, the act of writing provides the writer with a sense of

structure, coherence, and order that can aid to shape their view of themselves and their illness

(Cohen 32). Having one’s life experiences at the center of a narrative can help to influence the

way that they see themselves both as a part of and separate from their illness (Cohen 37). But is

there a right way to write a narrative? The answer simply put, is no. The act of writing narratives

can take many forms from participating in writing groups, expressing oneself in an online blog,

or even just jotting down thoughts and emotions as they arise, the overall aim of telling one’s

story is the same: to find a voice, meaning, and healing through the act of expression.

Limitations of narratives

Yet, narratives alone cannot encompass the complexity of Alzheimer’s disease; it is

important to note not only their benefits, but their limitations as well. Although written narratives

can create coherence in the lives of the writer, this is not always the case and should not be

considered the aim of writing illness narratives (Hyvärinen et al.). The idea that writing will

provide a total and complete sense of control is a flawed one and to begin writing with this idea

in mind will often lead to frustration and quite the opposite effect. It can be an exasperating task

to attempt to convey the feelings and emotions attached to past experiences and memories; words

are limited and do not always capture or convey our experiences as we would like (Post preface

VII). Furthermore, our interpretations and self-analysis can often be contradictory and incorrect

18

(Hyvärinen et al.). Yet, writing for the sake of expression and attempting to give rise to our inner

voice does not necessarily need to be an accurate, coherent, and complete account. Just as with

any other experience, the results will be different for each person and while one may find control

and coherence in their lives as a result of writing narratives, another may use this approach more

as a form of expression and journey toward self-understanding and healing. Furthermore, written

expressions can be fragments of thought that attempt to give meaning to the situation around us

and thus provide us with a sense of comfort and understanding; they need not be confined to

eloquent, cohesive, and scholarly narratives.

Especially when considering Alzheimer’s narratives, it is important to understand that the

writing can be ambiguous, difficult to read or understand, and incomplete. The ethicality of

allowing a person to express themselves does not lie in the need to correct and counter their

written perspectives of past experiences but rather to listen and attempt to understand their need

to express themselves and have their voice be heard (Post 20). Written text can often expose

aspects of our lives and past experiences that are not easy to cope with or reveal, even to

ourselves, yet, the exposure of such can often lead to a deeper understanding and acceptance of

ourselves and the world around us.

There are certainly some limitations or barriers that people face when writing about

themselves or their loved ones. One in way in which uncertainties about how to write about

someone or how to tell your own experience is by writing from the point of view of fictional

characters. This can greatly help to eliminate many anxieties that the writer may have about

exposing their own experiences to an audience. By transferring their thoughts, outlooks, and

emotions to that of a fictional character, the writer may be better able to analyze and qualify their

past, present, and future selves either through the lens of the illness or not.

19

Furthermore, writing in online blogs or attending workshops serve to build a routine in

writing and expression. Maintaining a personalized and structured routine relieves caregiver

stress, incorporates coherence and a framework to the lives of the patient and caregiver, and

provides both the caregiver and patient with the space and attention they need. Moreover,

participating in routine, enjoyable, and stress reducing activities such as writing, attending

events, or partaking in other forms of expression allows for both the patient and the caregiver to

pinpoint their areas of highest stress and agitation and to reduce it through these activities

(Alzheimer’s Association).

Relating to others and finding a good fit

Just as there are many ways to express oneself through writing, there are also many ways

to express oneself through community-based activities, art, dance, or communication. For some,

writing an illness narrative will serve as a way to transfer their thoughts and inner turmoil to

paper and thus begin to process themselves and the disease. For others, writing illness narratives

serves as a way for them to reach out to other patients and caregivers in an effort to support one

another and communicate through the hardships. For those who attempt to create a sense of

community and understanding through writing, attending writing workshops or creating and/or

joining an online Alzheimer’s disease blog will be immensely beneficial. Writing workshops that

focus on illness narratives allow the writers to communicate with one another face to face and to

build off of their strengths. The sense of community that comes with in person interactions and

open discussions about difficult topics, allows for a deeper understanding of oneself, the disease,

and how it affects the world around them (Alzheimer’s Association).

These narratives give a voice to the afflicted and allow them to continue to be a part of

their lives and stories. When others see patients writing these stories, their personalities and

20

humanity are restored and strengthened. They are no longer a summary of their disease because

their narratives demand their audience to look past their symptoms and any misconceptions and

to see a person. Through these narratives, families and caregivers are able to learn from their

loved one and to better relate to them and understand their experiences. These works thus display

inner thoughts and feelings that may otherwise have gone unexpressed. Furthermore, through the

act of writing their own narratives, caregivers and family members can communicate their own

frustrations and begin to move toward feelings of comfort, relief, and meaning. Narratives are

just one of the many options available to help patients and caregivers alleviate feelings of

isolation, misconceptions, and other difficulties associated with Alzheimer’s disease.

For years I was witness to the uncommunicated frustrations between Ms. Marjorie and

her family. My mother served as Ms. Marjorie’s main confidant and companion and from their

friendship, I learned more then they will ever know. I hope this guide will help you to heal and to

find meaning and comfort in your words, in your story, in your experiences.

21

Works cited

"Alzheimers Education and Care: Daily Routines." Alzheimers Education and Care: Daily

Routines. Alzheimer's Foundation of America, Jan. 2016. Web. 8 Oct. 2016.

<http://www.alzfdn.org/EducationandCare/dailyroutines.html>.

Burke, Lucy. "Oneself as Another: Intersubjectivity and Ethics in Alzheimer’s Illness

Narratives." Narrative Works [Online], 4.2 (2014): n. page. Web. 3 Sep. 2016

Ignatieff, Michael. Scar Tissue. New York: Farrar, Straus, and Giroux, 1994. Print.

Karlsson, Eva, Stefan Sävenstedt, Karin Axelsson, and Karin Zingmark. "Stories about Life

Narrated by People with Alzheimer's Disease." J Adv Nurs Journal of Advanced Nursing

70.12 (2014): 2791-799. Web.

Kilty, Sharon. "Telling the Illness Story." Telling the Illness Story. AISSG, n.d. Web. 2 Oct.

2016. <http://www.aissg.org/articles/telling.htm>.

Narrative and Bioethics in Medical Education. By Nancy King. Story, Health, and Healing: A

Symposium on Narrative Medicine, Winston Salem. 1 Oct. 2016. Conference.

"Overview: Alzheimer's Association." Overview: Alzheimer's Association. Alzheimer's

Association, 2016. Web. 8 Oct. 2016.

<http://www.alz.org/alzheimers_disease_1973.asp>.

Post, Stephen G. The Moral Challenge of Alzheimer's Disease. Baltimore and London: Johns

Hopkins UP, 1995. Print.

22

Power, G. Allen. Dementia beyond Drugs: Changing the Culture of Care. Baltimore: HPP/Health

Professions, 2010. Print.

Snyder, Lisa. Speaking Our Minds: Personal Reflections from Individuals with Alzheimer's.

New York: W.H. Freeman, 1999. Print.

Walrath, Dana. Aliceheimer's: Alzheimer's through the Looking Glass. Pennsylvania:

Pennsylvania State UP, 2013. Print.