She was a medical-surgical patient of mine on a very hectic night shift. The unit was at maximum capacity and scarce on staff, and several patients with delirium or dementia were considered safety risks. Lydia (not her real name), a woman in her 70s, had Alzheimer’s disease. Because she responded to staff reorientation more readily than the others, she was not assigned a sitter. Instead, she was placed in a room right next to the nurses station, with bed alarms activated.
Lydia’s husband had stayed with her from the time she’d been admitted early in the morning until right before dinnertime. After he left, she gradually became more confused. By the time I received the shift report, the day-shift nurse was struggling to keep Lydia from wandering out into the hallway.
“She’s got that fractured right arm in a sling. She hasn’t said anything about pain since I medicated her this morning. I’m worried that she’s getting more restless, but she’ll follow your instructions. Just takes some time.”
In the middle of the shift report, the bed alarm from Lydia’s room sounded. I ran to the elevators and found Lydia waiting for the doors to open. “How’s it going?” I asked. “Where are you headed?”
“I’m just not sure I’m supposed to be here,” she replied. “I don’t see my husband anywhere, and I have got to know why I am here.”
“Miss Lydia, you’re here in the hospital because you broke your arm, and the doctors are trying to fix it,” I explained. “I’m Gretchel. I’m going to be your nurse for tonight. How about taking a walk with me back to where my desk and your room are?”
Lydia obliged. “Sure, but only for a little while. I’m not sure I’m supposed to be here.”
“Thank you so much for agreeing to help me out,” I said. We made our way back past the nurses station to her room.
“Here we are. Do you think you can hang out for a little bit while I visit my other patients? I won’t take long.”
“Look, I’ve got all this to sort through and read.” Lydia pointed to the large stack of newspapers her husband brought to keep her occupied. “Don’t worry. I’ll be here doing my work,” she reassured me.
Minutes after I’d finished visiting my other patients, the bed alarm in Lydia’s room sounded again, this time accompanied by high-pitched screams. I found her standing in the midst of torn-up clumps of newspaper pages that littered most of the room. Her face was streaked with tears, and she howled in anger. “I don’t know why I’m here! Why am I here? I don’t want to be here!” The sling that cradled her arm lay crumpled at her feet.
I approached her cautiously. “Lydia,” I said, “I’m going to come closer to you because I just need to check your arm. Is that OK? I just need to check.”
She nodded slowly. “It’s OK. I’m not hurt. It’s just a little sore.”
“Now I’m going to touch your arm, OK? Just to check.” I inspected it. I saw no changes.
She interrupted my inspection. “I need to talk to my husband. Now! Right now! I need to know why I’m here, and he needs to tell me.”
I dialed the phone number he had written on the dry-erase board on the wall facing her bed. “Sir, this is Gretchel, your wife’s nurse here at the hospital. She would like to speak with you. Can you talk right now?”
He sounded worried. “Of course. Is she OK? Do I need to come back? I just need enough time to eat something and take a shower. I haven’t done either in two days.”
“No, I think we’ve got things under control. But Lydia would like to speak to you. Here she is.” I gave the phone to Lydia.
“Hello. I hope you’re OK,” she said. “I couldn’t find you. Why am I here? Did you leave me? Is it OK?” I stepped out into the hallway to give them time to talk and give Lydia space, which I sensed she needed after a day of frequent checks by staff members and interventions by people on her health care team.
As they finished their call, I quietly cleaned up the mess around the room. I then repositioned Lydia’s arm back into the sling and reassessed her level of discomfort. “Tell me, Lydia. If you could give the pain in your arm a score from one to 10, with zero being no pain, and 10 the worst pain ever, what number would you give it?”
She considered the question carefully, squinting her eyes in concentration. “Hmm. I think it’s a 7.5. Yeah. A 7.5.”
“OK, Lydia. Has it been 7.5 for a while?”
“Yeah. I guess I never thought about it.”
“Would you like to take some medicine to help with the pain? It’s OK if you don’t want any.”
“No, I think I’d better take some. I probably needed some earlier, huh? It’ll help me sleep.”
“One more thing. How can we make sure you’ll know right away where you are when you wake up? You’re at _____ Hospital for a fractured arm, and the doctor will decide in the morning if you need surgery or not. Your husband says he’ll be back first thing in the morning. He just needs a little sleep.”
“OK,” she agreed. “Can you write something like that on the board?”
“How about we write it together?” I suggested. “You tell me the most important things to mention, and I’ll write. Here we go.”
By the time we finished, I had her window shades drawn all the way up (so she could see it was night time), the lights in her room were turned off except for the bathroom light (because she wanted a night light), and she was tucked under her covers, and the dry-erase board bore this note:
Hi, Lydia! It’s Friday, March __, and you are at _____ Hospital. I’m Gretchel, your nurse. You and I wrote this note to remind you where you are.
Your husband brought you here this morning because you broke your right arm when you fell at home. He will be back in the morning to meet with your doctors. If you need anything, I’ll be outside your room at the nurses station. The door to your room is open so I can hear you if you call for help. You can also press the red button on the left rail of your bed.
After taking the pain medication, Lydia slept most of the night. Once or twice I saw her sit up in bed, look out the window, read aloud the words on the board, and go back to sleep. When I stopped by her room in the morning to say a final goodbye, she held onto my hand after I gave her a hug.
“I want to thank you for being patient with me last night. You know, I know I’m losing it,” she admitted. “It’s hard, but it just is.”
She wiped the tears rolling down her cheeks and averted her gaze to the view outside her window, the bright sunlight illuminating her gray eyes. Lydia never looked more beautiful to me than in that moment, and I have never forgotten what she looked like then.
On my hour-long commute home that day, I realized that Lydia was the reason I was a nurse and why I wanted to be a nurse scientist. My experience with Lydia was the touchstone for my dissertation work in pain communication and, ultimately, the development of a conceptual model for person-engaged dementia care. I’ve recounted our encounter many times over the years to classmates, peers, and nursing students, at research conferences, and in interviews.
The person-engaged model for dementia care I developed as part of my dissertation is based on what Lydia taught me: that persons with dementia are engaged citizens who express their care experiences, make care choices, and contribute to health care team goals. As health care providers, caregivers, and communities, we are obligated to listen to what they have to say and to ensure they have opportunities to build and sustain capacity to engage in their care.
I don’t know what became of Lydia. It’s a blessing and a curse to have her memory so deeply ingrained into the narrative of my nursing journey. I am pained by the inevitability of her prognosis and its impact on her loved ones and the community to which she belonged. But I am also encouraged by the thought that, during the short time we knew each other, I was able to engage her so that she understood, without question, how much I cared. Lydia mattered, and I wanted her to know she mattered to me.
You still do, Lydia. You always will.
Gretchel Ajon Gealogo, PhD, RN, MHR, MSN, CMSRN, RN-BC, is a medical-surgical nursing and pain management certified nurse, with special interest in consumer advocacy and research partnerships with cognitively impaired populations.She recently finished her PhD in clinical nursing science from The University of Texas Health Science Center at San Antonio.