A Light in the Dark

Allison Hess

2015 - 2016

Nebraska, United States

Eloise Hill sits on a piano bench, rhythmically moving with the music echoing from her fingers into the halls of a memory care facility in Lincoln, Nebraska. She was a piano teacher all of her adult life. The music is a part of her soul. She remembers every note.

Then, the music stops.

She looks to Ward, her husband, as he sits next to her. Married for over 68 years, both Eloise and Ward have been diagnosed with Alzheimer’s disease.

“Which song should be next?” she asks her husband.

Ward’s suggests that she plays, “What a Friend We Have in Jesus”— one of their favorites. Eloise smiles and turns toward the piano again. It is the exact song she had played minutes before. Ward subtly smiles and looks into the distance, remembering another time.

With the help of the Alzheimer’s Association Nebraska Chapter, I documented the daily life of The Hills while they resided in memory care facility. With inspiration stemming from my own grandmother’s diagnosis, the goal was to understand a disease that transformed a woman I love into someone who now rarely recognizes me.

For eight months, my camera served as the shield separating me from the harsh reality of witnessing an individual slowly declining in front of my eyes. It also served as my key to understanding how one can shine through their diagnosis.

Alzheimer’s disease does not represent the soul of these men and women. Once diagnosed, new realities emerge for these individuals, their caretakers and loved ones. I have learned that Alzheimer’s is a harrowing disease— but there are times of both sorrow and solace.

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  • Clockwise, top left: Nancy is evaluated by the director of CountryHouse Residences, a memory-care facility in Lincoln, Nebraska, to see if it would be her and her family’s best interest to move into the facility. Ron stirs his cup of hot cocoa with a fork, after pouring juice into the cup, while at breakfast one morning. Roxy reads the newspaper while enjoying one of the first spring days; many with Alzheimer's lose the ability to read. After moving in the memory-care facility earlier that morning with the help of her family, Nancy’s daughter helps her get ready for the day while she stares out her new bedroom window.

    For many diagnosed with the neurodegenerative disease, staying in their home is their last attempt at keeping the lifestyle that they have always known. While some might be apprehensive about memory-care facilities, they are able to provide assurance, not only for those who live there, but also for their loved ones who may not otherwise know.

  • Married for over 68 years, Henry "Ward" and Eloise Hill both suffer from Alzheimer's disease. He was diagnosed first. Often times, he still remembers his wife.

  • Mementos of the couple's past are displayed in their room at CountryHouse Residences, where they now reside. They were married in 1948: her father made the couple wait to get married until after she graduated from college.

  • All of her adult life, Eloise was a piano teacher. At one time, she had more than 60 students visiting her home each week. She no longer lives in the same house or is able to teach, but is still able to play songs by memory. The disease affects some parts of the brain more than others.

  • For the CountryHouse Residence's annual Christmas caroling concert, Eloise played the carols on piano for the other residents to sing along to. She was able to remember all of the music notes, but just not the number of times she had played each chorus.

  • Increasingly, there are days that Ward does not remember his wife. He has moments when he thinks that other women living in the memory-care facility are Eloise, the person that he built his life with.

  • Even though he may not mentally always remember Eloise, Ward physically relies on her guidance, almost always holding his wife's hand to navigate through his increasingly unfamiliar world. Over time, he became quieter, his wife instead speaking for him.

  • After falling one morning, Eloise and the couple’s caretaker, Kathleen, check Ward into a local emergency room. He sits in a hospital bed, hands outstretched. Unable to assist her husband in the situation, Eloise sits in the corner of the hospital room, watching their caretaker and a doctor instead help Ward.

  • Clockwise, top left: Mary receives her daily medication from a CountryHouse nurse. A nurse helps guide Anita to breakfast. Irvin dances with one of the CountryHouse caretakers. Mary, with the help of a nurse at the memory-care facility where she resides, gets ready for the day.

    Being a nurse in a memory-care facility can oftentimes be a challenge. For many diagnosed with Alzheimer’s, they experience increased levels of both anxiety and anger. Sudden escalations are not uncommon. Simple tasks can often turn into major battles.

  • One of the memory-care facility employees assists Eloise in getting dressed. She was, at first, unhappy with her and Ward's move into the memory-care facility. Now, she and her husband rely on either her personal caretaker or the facility's employees to help them with many daily tasks.

  • Ward, unaware of where to go after standing up, listens to the couple's caretaker, Kathleen, during an outing one afternoon. She believes that it is beneficial for those diagnosed with the disease to get out and see things, to keep their memory sharp and establish normality.

  • The couple's children created a guest book for those that visit the couple, to make it easier for them to remember.

  • Eloise's caretaker curls her hair at least once a week. Since moving into the assisted-living facility, Eloise now rarely styles her own hair or showers on her own. Still, she remembers her favorite hairstyle, the pageboy, which she had in college.

  • The couple's son, John, and his wife pick up Ward and Eloise from the memory-care facility every Saturday morning. Ward's life had been at his Seventh Day Adventist church. For years, he was a theology professor at the church's college. He never forgets about attending the weekly Sabbath.

  • Eloise stares out the windshield of her caretaker's vehicle while on an outing.

  • Eloise and Ward, along with another CountryHouse resident, Joyce, participate in the memory-care facility's various programs, including attending gym classes. The facility believes that an active body and mind is one way to prolonging the side effects of Alzheimer's.

  • Even with preventative measures, the disease still inevitably takes a toll on the health of those diagnosed. Ward's naps have become longer, now stretching out for hours into the late afternoon.

  • Clockwise, top left: Dick is assisted in getting back to his room after lunch. Irvin, without his shoes, walks to breakfast. Minutes before, he took off his shoes near the entryway of the memory-care facility. Jim, without any help, walks back to his room.

    One moment a resident’s overwhelming sharpness can transform into not being able to form a coherent sentence. The disease affects each individual differently.

  • Eloise checks on Ward while he sleeps one afternoon. He had fallen just days before. She could not remember what day the fall occurred, but says that she was thankful that they in a facility, where people were able to immediately help.

  • Ward grasps his wife's hand. The couple first met in college in 1945 during a handshake, a school-sponsored event in which people line up and greet one another, as a way of getting acquainted. During the handshake, Eloise says that she turned to her then roommate and whispered, “That’s the man I’m going to marry someday,” and pointed to Ward in the crowd. It was at this moment that she remembers falling in love with him.

  • While on an outing with Ward and their caretaker, Eloise stops to smell flowers in a store.

  • Ward sits in the couple's room. When he and his wife still lived in their home, Ward would sit outside and watch the squirrels and the birds play. His condition has declined since moving into the memory-care facility two years ago.

  • Clockwise, top left: Eloise looks at Ward while he stares at the window of the couple's bedroom. Marilue sits in the CountryHouse's van during one of the many outings that the memory-care facility takes the residents on. Bev, a former softball coach, coaches the facility's employee softball league each week. Even after being diagnosed with Alzheimer's, remembering well beyond just rules of the game. Accidently wearing his wife's sweater, Ward grasps his wife's arm as they talk about how they first met. Over time,

    Alzheimer’s disease quietly takes a toll on not only the diagnosed, but also their friends, loved ones and caretakers. Even today, discussions of the disease are often followed with a deafening silence and a call for understanding.

  • My grandmother, unable to locate where she had earlier hidden her purse, searches through books in the nightstand next to her bed, hoping to find the lost items in the pages of the books that her late husband, my grandfather, might have left behind.