More than a Nurse: A Part of the Family

Driving through the back hills of Portland that crisp autumn morning, the golden rays cresting the peak of the treetops with crimson and metallic leaves were lighting my way on the dewcovered county road. With nervous anticipation, I was making the one-hour journey to meet my first home health hospice patient and her husband.

I knew little about Shelby and her husband, Robert. She was a 54-year-old patient diagnosed at 50 years old with Amyotrophic Lateral Sclerosis, ALS, or Lou Gehrig’s Disease, a progressive neurological disease affecting muscle movement. She was on a ventilator and had a feeding tube. Other than the basics, I knew they had several nurses assigned to them in a short time, but none lasted more than a month.

As I approached their quaint and unassuming mobile home early, as usual, I took a moment of prayer to ask for strength, guidance, humility, and understanding in hopes of meeting their needs and quelling my concerns about whether or not they would like me and if I would be a good fit for them. I gathered my equipment bag and lunch and walked the manicured path to the front door. Noticing a praying angel statue in the flowerbed, I accepted that as a positive sign.

As I waited patiently for my knock to be answered, I could hear birds chirping, a dog barking, and busy shuffling behind the door. I couldn’t help but wonder what life entailed for this couple, how it had changed as Shelby transitioned from full-functioning to bedridden.

Robert finally answered the door apologetically, explaining he was putting up the vicious guard dog, a lovable little ankle-licker named Harley, who quickly became my shadow in the days to come. Robert, a young-looking 74-year-old gentleman in his brown trousers and white t-shirt, reminded me of my grandpa, with a warm smile that made his eyes twinkle and an aura of fresh Aqua Velvet on his freshly shaved face. He said, “Ahh, good morning, you must be Nurse Betty!” His friendliness put me at ease, but I couldn’t help but wonder why the other nurses hadn’t worked out.

I followed Robert to a converted office with French glass doors; I could hear the loud hum of the ventilator and condensation gurgling in the collection tube as we approached. Shelby was prominently lying like a queen on her throne in the center of the room on an angled hospital bed. A large computer desk was pressed against the left wall and a long dresser to the right, topped with pill bottles, tracheostomy supplies, an irrigation syringe, and a mortar and pestle. The aroma of Dakin’s solution and A&D ointment filled the air. Her only movement was thrusting her chin forward, raising her eyebrows, and winking her right eye. She had each edematous arm propped on pillows and wore a rose-colored pajama top. From her waist down, a soft handmade quilt draped over the edges of the bed. On her lap was a computer connected to an extended metal rod device she would control with her chin to tap out words, delivering her message in a feminine, robotic tone.

Shelby welcomed me with a friendly, prepared message, and we spent time getting to know each other. I took notes as we carefully combed through a typical day. Robert also shared the nuances and signals that would alert me to essential issues needing immediate attention. For example, when turning Shelby for incontinence care, the ventilator tubing may quietly “whoop” and disconnect, but the alarm would take precious seconds to sound, leaving her gasping and breathless. My heart went out to Robert; no wonder he didn’t sleep well.

Robert continued the house tour, including a bedroom at the end of a corridor stock-piled with supplies, organized meticulously. At the other end, he showed me the tidy kitchen with a laundry room adjacent to it — in case he fell behind and I needed additional linens. He said he often gets tired and has assumed the bulk of Shelby’s care, but quickly smiled and said, “But I wouldn’t have it any other way.” Robert confided that he had lost his first wife to cancer and had taken care of her years before. He said it was challenging to find the proper nurse who he felt confident enough for him to leave the house. My predecessors would come late, or not at all, be on their telephone and inattentive to Shelby’s preferences. His biggest concern was when the nurse would step outside for a smoking break. Not only was oxygen used in the home, but there was no way to respond to unheard alarms. As a result, Robert said he is the only one to maintain her ventilator tubing changes and backup battery and always remained closed with doors open. It was no mystery that this dedicated man needed a nurse as much as his wife needed one.

In the days ahead, our professional friendship grew as I proved my worthiness to be welcomed into their home and care for them both. I looked forward to Robert’s morning greeting, and I would occasionally surprise Shelby with her favorite Chai tea. Although she had a feeding tube, she could enjoy no more than eight teaspoons by mouth at a time, always responding with a wink and a push of a computer button, “Mmmmm, delicious!” I also discovered she liked a vanilla-scented lotion made by Avon. After her morning bath and lymphedema massage, I gently rubbed in the cream; she would wink her eye and say, “That is lovely!”

I would strategically plan my lunch time and bathroom break, always listening for alarms and not being gone from her bedside for more than a minute or two at a time. Harley stayed at my feet most of the time, but when leaving the room briefly, he would stand in the doorway waiting and watching, serving as my eyes and ears. I was able to quickly start a load of laundry and run back to the room, folding at the desk and having piles ready for Robert to put away after his nap. I found the little things were making a big difference, and I truly enjoyed our conversations.

Shelby would ask me about my weekend with my children, but she could sense I would hold back my joy. I was sensitive to her limitations and didn’t want to make her sad about being bed-bound. She winked and assured me that she felt true happiness hearing stories outside her four walls.

At the three-month mark, expecting a typical day, I was greeted by Robert, who said he and Shelby wanted to talk to me about something important. Shelby met me with a longprepared message, thanking me, telling me how much they trusted me and that I was like a daughter to them. I couldn’t hold back my leaking eyes, and I thanked them for giving me a chance. Robert said there was more.

They had decided for Robert to return to his bowling league now that he was comfortable leaving the house again, so today was the day he would teach me the cleaning, caring, and changing over the ventilator tubing. This was an incredible milestone, and I felt honored.

I cared for Shelby for nearly two and a half years, sharing echoes of laughter and silent tears, before receiving a call from Robert one evening. He said he didn’t want me to hear from my agency that Shelby had passed away peacefully. After all, “You’re family,” he said. Hot tears rolled down my red cheeks as my heart was saddened, heavy, yet full of joy. I was so grateful to be included in a small part of their lives and to have earned a place in their hearts and home by doing what I love to do: proudly serving as a compassionate, competent advocate who connected with a heart of gratitude.

*Names were changed to respect privacy.

— Janet L. Thompson ’23, Nursing