Like a Star in the Night

By Anneleah Jaxen

The first time I saw Bonnie, she was lying in a large crib. Her body was emaciated and her hair shorn close—she was a shocking sight. The activity director at the nursing home told me to stay away from her. She was concerned that the sight of Bonnie might traumatize my three young daughters, who were volunteering at the home with me. Huntington Chorea had ravaged Bonnie’s nervous system, leaving her unable to control her body. She could not speak, chew, walk, or even sit up. She had to wear a diaper and eat pureed food. Unable to express her thoughts or desires, Bonnie’s existence consisted of lying in the crib alone all day, and she was furious.

Huntington Chorea is a cruel disease that imprisons a perfectly healthy and normal mind. For a year and a half, my children and I spent hours every Sunday at the home, but we never visited Bonnie’s room. The activity director’s advice to “stay away” haunted me. But then I was hired as the activity assistant at the nursing home and it became my job to visit Bonnie. I felt uneasy and a little scared. What could I say to her? How could I help? By then the nursing home had outfitted Bonnie’s room with wall to wall mats on the floor and a bean bag chair in the corner. She spent her days flopping around on the mats like a squirming skeleton.

I asked myself what I would want if I were in Bonnie’s situation. I knew that music would be at the top of my list, so I brought in my “boom box” and a tape of Patsy Cline’s greatest hits. I put the headphones on Bonnie, and she sat still and content for an entire day. I felt like a great success, and hoped that perhaps there really was nothing to fear. The next day, while I was trying to adjust the headphones to fit Bonnie, my mind was preoccupied with all the musical ideas I had for her future. I could tape old movie musicals and symphonies…I could tape operas and plays…I could…WHAM! I saw stars and felt fire spread down my cheek. Bonnie had mustered all her control and strength and landed her partially closed fist across my face, scratching my cheek with her nails. Stunned and hurt, I left the room. When I returned I saw hatred in Bonne’s blue-green eyes. Bonnie had only her eyes left for communication and she had mastered the use of them. The nurse’s aides who cared for her told me that she could land a punch when you least expected it, and sometimes would grab a handful of hair if she had the chance. It didn’t matter; I would just have to be more careful. I was determined to reach her in spite of her hatred. For a while, though, I must admit that I avoided her room due to my frustration and uncertainty about what to do for her.

Even after I was hired to work at the home, I continued to bring my children to volunteer once a week. One day I noticed 5 year-old Valerie standing outside Bonnie’s door, staring at her photograph. I figured she was probably curious, because people always spoke in whispers about the resident who lived inside. But several times during the next month, I found her standing outside of Bonnie’s room. Eventually, Valerie came into my office and announced, “Mom, I want to go see Bonnie.” “Are you sure?” I asked “Yes Mom, I need to go see her.” Would it be OK? Could Valerie get hurt? What was the right thing to do?” Looking into my sweet child’s huge blue eyes, I knew the right thing to do was to honor her request. So, I explained that Bonnie might look scary, that she wouldn’t be able to talk or hug, and that she was very, very skinny. I talked about how Bonnie could still think just like we could, but that the disease had made her body stop working. Valerie said she understood, and we went together to see Bonnie. I didn’t know what to expect. Was this just a 5-year old’s curiosity? Would Bonnie look at her with hatred? Would Valerie be scared and repulsed? Valerie sat next to Bonnie on the mat and stroked her hair. I watched Bonnie’s features soften. We stayed a long time, and I answered all of Valerie’s questions. She decided that she wanted to see Bonnie every week.

The next day, I went to talk with Bonnie about Valerie. She was lying on her back, so I sat down next to her. I told her that Valerie wanted to see her regularly and that this was strictly Valerie’s idea—I had never suggested it, and wasn’t sure if I was comfortable with it. I explained that if Bonnie would promise to take care of Valerie and never let her get hurt, I’d share my daughter with her. Bonnie surprised me by barking a reply that sounded like “Yeah.” I added, “Bonnie, I’m going to put my hand here on the mat within your reach. If you want to be friends and promise to take care of Valerie, take my hand. I know it’s hard for you, but I will give you lots of time.” To my utter amazement, Bonnie’s arm swiftly jerked up and her hand landed directly on my upturned palm. Hot tears sprang from my eyes and rolled down my cheeks. All I could say was, “Thank you.”

Weeks turned into months and whenever Valerie was at the home, she spent most of her time with Bonnie. At first she would ask me to go with her, but then she began running by the office, yelling in my direction, “I’m going to Bonnie’s, Mom.” I would find her there lying on the mat with Bonnie, or sitting in the beanbag chair with her. Sometimes Valerie would be holding her, sometimes stroking her hair and often kissing her. Valerie would show Bonnie everything: her lucky fishing hat, her box of junk (that she called her collection), her favorite doll, a picture she drew, and even her report card from kindergarten. Bonnie was always gentle with Valerie even though she couldn’t respond in any direct way. One day Valerie came to me and said, “Mom can’t we get Bonnie a doll or something pretty for her room? She doesn’t have anything.” Although I was struggling financially, how could I say no? How could I think of budgets and bills when my 5-year old was learning to care for someone less fortunate? Valerie and I went shopping and she picked out a lovely white stuffed bear in a pink ballerina tutu. The next time she visited, she placed the bear in the crook of Bonnie’s arm and wrapped her hand around it. I often found it there even on days when Valerie was not visiting. Once, I even saw Bonnie reach out and pull it to her. Valerie often reminded me to check with Bonnie when I got to work to make sure she had her bear. One Saturday, Valerie said she wanted to draw pictures for Bonnie’s room. In a supply closet, I discovered a roll of butcher paper, perfect for attaching around the perimeter of the room near the floor where Bonnie could see the artwork. Valerie and her big sister, 11- year old Savannah, drew suns, moons, rainbows and stars, and barns with sheep and cows. Valerie also drew a picture of herself standing in a meadow with Bonnie. Our lives continued to be intertwined until the day that I discovered that Bonnie was dying. It seemed so sudden. My mind was a whirl. This just couldn’t be happening! When I walked into her room, I saw that Bonnie was tucked comfortably in a real bed. She was wearing a beautiful pink night gown and the bear was in the crook of her arm. She was weak and lay more still than I had ever seen her, but her eyes were still lively. I thought my heart would break. I cried with true grief. Valerie, away on a trip to visit her grandparents would never get to say good-bye to her friend. When Valerie returned, I took her into the office and told her that Bonnie had gone to heaven. She jumped as if she had been hit in the stomach, then let out a scream. Long, deep sobs racked her small body and brought me to my knees.  We walked to Bonnie’s empty room and cried again as we knelt in the emptiness that was once full of Bonnie. I held Valerie and whispered, “My little girl, you were like a star in Bonnie’s dark night and Momma is so proud of you.”

Anneleah, Megan, Valerie and Savannah 1994

The Community at Marquis Tualatin hosted our Live AM Networking event on Friday April 29th and it was spectacular! The director of this amazing community, Julie Kresl, welcomed our Chamber members with coffee and delicious pastries. I was so impressed that one of the cookie’s were decorated to look like the Chamber logo, but I wasn’t surprised, because it has been my experience that Marquis always goes the extra mile. Julie described the Marquis Community and spoke about the amazing Community room that we were enjoying. The story above about Valerie and Bonnie took place in a Marquis facility! If you are looking for assistance navigating the waters of long term care give our Chamber Directory a  look. We have many people who can assist you to find the right fit. Our Chamber Ambassador, Bill Cohen, at Cohen Caregiving Support Consultants, LLC was helping at this AM networking event. Bill has direct experience with navigating long term care options and you would be in good hands…and drop by and say Hi to Julie Kresl at The Community at Marquis Tualatin. She would love to show off this beautiful community that offers excellence and a quality of life for your loved ones.