Print Email
 

Medical Humanities

Memories of a Fuzzy Sweater

Alyssa Vigliotti

May 11, 2018

 

“Lucy” is sitting in the corner of the room, rocking back and forth, crying. Her hands are resting

quietly in her lap, as if she’s oblivious to the tears falling from her eyes and washing over her

cheeks. I ask the caregiver if we can do anything to help her. I learn that this is “just Lucy being

Lucy”. Her dementia has grown quite severe at this point—she cries uncontrollably for the

majority of each day. Nobody knows what makes her cry, and stopping her tears is an even

deeper mystery. The caregivers that work in the memory support unit seem to approach her with

a sense of resignation.

 

At the time I am a second-year medical student carrying out a research study involving persons

with dementia on the locked unit of a local assisted living home. I’ve been drawn to the study

because of my personal experiences with the illness. My Nana had dementia. She was a loving

Italian woman who lived to be 92 years old. She was born and raised in New Jersey, pronounced “coffee” like “couw-fee,” and loved her cakes. She adored her family and made a mean eggplant parmesan. To this day, I still can’t order eggplant parmesan in a restaurant—nothing would compare.

 

As I sit watching Lucy, I instantly think of my Nana and flash back to when I visited her a few

years earlier. She is sitting at the kitchen table next to my parents, crying inconsolably. At this

point, her dementia is not as severe as Lucy’s, but her situation is just as distressing. Like Lucy,

her tears are streaming down, falling like raindrops from her nose, cheekbones, and chin. The

tissues she kept tucked away under her wristwatch, ready at a moment’s notice, are now being saturated within seconds. Yet unlike Lucy she still has a sense of self-awareness. She desperately reaches out to my parents, asking them why she is becoming forgetful. Nana was in, what I believe to be, the most heart-wrenching stage of the illness, an imperfect balance between remembering and forgetting.

 

On this day in the assisted living facility, however, Lucy is no longer teetering between losing

her short-term memory and being aware of its loss; she is beyond that point. She is tiny and frail

– you can see each of her veins beneath her nearly translucent skin. They wind through her arms and hands, splitting and anastomosing like a meticulously created spider web. Her mouth is slightly ajar and catches some of her silent tears. She too looks so inconsolably sad.

 

Having just arrived from morning lectures, I am wearing a black and maroon sweater jacket, one

of my favorite articles of clothing. It’s the type of sweater that just screams autumn weather –

slightly oversized with elongated sleeves that partially cover my hands. It’s perfect for cool fall

nights when I’m sitting outside by a bonfire and want to feel warm and cozy. My favorite part of

the sweater, however, is its texture. Sections of it are as soft as down feathers on a baby chick.

 

I pull over a chair and sit down next to Lucy. After observing that she did not have a supply of

tissues hidden in her sleeve like my Nana, I offer her a tissue. She looks at it curiously—I’m not

sure she remembers how to use it. I try talk to her, to ask her why she is crying. I am confronted

with the familiar stare that my Nana eventually gave me towards the end of her disease

progression—hollow indifference. But then something happened. As I moved my hands over

hers in an attempt to offer comfort, my sweater brushed against her skin. In this instant, her eyes seemed to flash to life as she started to feel my sweater. She began to smile and her crying ceased. For the next ten minutes, I sat next to Lucy as she happily felt along the soft fuzz with her long, boney fingers.

 

Later that night, as I sit wrapped in my apartment, still wearing the fuzzy sweater, I can’t stop

thinking about Lucy. What was she thinking as she felt its softness? Did she simply enjoy its

texture, or did that tactile sensation reach deeper and awaken a memory, feeling, or emotion that had been previously dormant? It then occurs to me that Nana had similar episodes of

“awakening.” Towards the end of her life, she laid in her bed staring aimlessly at the ceiling. Her

family and friends would visit her and talk to her, but she had lost any flicker of recognition in

her eyes. Yet when her great-grandchild, only two years old at the time, would visit, her face

would light up with a smile as she held his hand. She looked at him as if he were the only person in the room, as if she knew exactly who that little person was.

 

I now reflect on this experience as a third-year medical student. I am a year removed from seeing Lucy on a weekly basis and I no longer have my Nana. When I think about dementia, I initially become saddened. I have glimpsed the emotional toll that it takes on those affected as well as their family members. I remember how hopeless my Nana felt when she realized she was becoming forgetful and how upset Lucy was as she cried silently in the corner of the room. Yet, as the weather shifts from summer to fall, I walk into my closet and again pull out my black-and-maroon sweater. As I feel its softness between my fingers, I am reminded of Lucy’s smile and my Nana’s happiness. I do not know what memories were triggered in their glimmers of recognition, but I do believe that in those moments they were happy. And this is what gives me hope.

 

In medical school, we are taught about the various types of dementia. We learn that there are

more than two million people living in the Unites States with Alzheimer’s disease alone, and that

this number is expected to increase. We are taught the familiar vignette to look for on

standardized tests, “a 72-year- old woman who remembers the birth of her child 50 years ago but can’t remember what she did this morning.” We are told that this disease has no cure and that once people succumb to it all hope is lost.

 

But, I believe there is an additional narrative to the story that needs to be told. Nana and Lucy

have both exhibited the sorrow and heartbreak that walk alongside the illness. Yet amidst those

moments, they have also exhibited moments of joy. They are not just another “tragic” case of

dementia – they are somebody’s sister, mother, and grandmother, real people who still have a

million memories and emotions buried deep within. Although many people are focused on the

pharmacological approaches to managing and stopping this illness, it’s no secret that these

treatments have modest effects at best. And in focusing solely on the neurologic pathways

implicated in dementia, we risk losing sight of the people themselves. Instead, we should

challenge ourselves to put the patient first, in front of the illness she carries. By focusing on the

person’s individual experience, we might have better success at improving her overall quality of

life and tapping into those memories that seem hopelessly lost. For both Nana and Lucy, all it

took was a great-grandchild’s hand and a fuzzy sweater.



Acknowledgments: I would like to thank Dr. Daniel George, Associate Professor in the

Humanities Department in the College of Medicine at Penn State University, for his continuous

encouragement and support.

 

Bio: Alyssa is currently a third year medical student at Penn State College of Medicine in Hershey, Pennsylvania.  Originally from a small town outside of Pittsburgh, she attended New York University and majored in sociology.  As a second year medical student, she evaluated the effects of a creative storytelling activity on persons with dementia over a six-month period.  She was fortunate to witness their personalities and hear their stories.  She has not yet decided which medical specialty she wants to pursue, but she is excited for the opportunity to have continuity with patients over a longer period of time.   ​

 


View Editor's Comments


 



 

Submit content to JGIM

JGIM encourages submission of articles aimed at improving patient care, education, and research in primary care and general internal medicine in all settings. Submissions must be original and not currently under consideration for publication in another peer- reviewed medium (paper or electronic).

Learn How to Submit Here

 

FEATURED ARTICLE

 

Darlyn Victor, MD, Paul Moots, MD and Jacqueline Fischer, MD

October 13, 2016

A 39-year-old African-A....

Read Article
 

Most Viewed Articles

73 Views

The Role of Community-Based Participatory Research to Inform Local Health Policy: A Case Study.

O’Brien, Matthew J.; Whitaker, Robert C.

Read Article| Download PDF
25 Views

The Role of Community-Based Participatory Research to Inform Local Health Policy: A Case Study.

O’Brien, Matthew J.; Whitaker, Robert C.

Read Article| Download PDF
31 Views

The Role of Community-Based Participatory Research to Inform Local Health Policy: A Case Study.

O’Brien, Matthew J.; Whitaker, Robert C.

Read Article| Download PDF

Most Recent Web Only Content

October

06

Cutaneous Exophytic Infiltration in Myelofibrosis

Agnese Comelli and Ilaria Izzo

Read Article

October

06

More Than Meets the Iris

Michael Kuo and Marelle Yehuda

Read Article

October

06

Dr. G

Kelly Chen

Read Article

September

10

A Death In November

Arya Shah

Read Article