1. Narayan, Mary Curry MSN, RN, HHCNS-BC

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I have been a nurse for nearly 40 years, and for almost all those years I have been a home healthcare nurse. For many of those years, I was an "on-call nurse," the nurse who was called in on the weekends or at night for unexpected problems. During these years, I provided care to countless patients with Alzheimer's. Perhaps it was to unclog a feeding tube, to evaluate and treat a newly noticed skin breakdown, or to assess a patient who developed a fever.


These were difficult patients for me; I so often felt ethically uncomfortable. To explain why, I need to tell you about my philosophy of nursing care. It is likely similar to yours. I felt that as a nurse, one of my primary responsibilities was to first establish a "therapeutic relationship" with the patient, and from there, to truly deeply care about this patient as I provided care and advocacy. However, I didn't know how to establish that therapeutic relationship with late-stage Alzheimer's patients. They seemed "vacant" to me, "not there," and I wasn't sure that, in this mystery of life we all try to live as gracefully as we can, the interventions that I was performing were the ones the patient needed most.


It seemed to me these patients were called to the "finishing line"-their "final destination." However, the interventions I was performing were part of saying, "No, you can't go." That felt wrong to me, because "there is a time to live and a time to die ..." and my vocation is to provide comfort, care, and help to patients in their life journey. And, to be honest, I felt uncomfortable because I couldn't see the "person" inside that patient. I coped by reminding myself to treat this patient with the gentle caring I would use for my own mother and father, and by "establishing the therapeutic relationship" with the family, who helped me learn who this person was, enabling me to "know" the patient, at least a little, as I assessed, intervened, and evaluated the care.


Presently, my beloved sister, Cathy, who lives across the country, has Alzheimer's disease, and is in its latter stages. Yet, last weekend, Cathy taught me a lesson with the help of some wonderful nurses who specialize in Alzheimer's care. It has been a most beautiful gift to me. I would like to share it with you.


I went to see Cathy for the first time in 6 months last weekend. My brother-in-law warned me that she no longer seemed aware of anyone. He said she was pretty much "unresponsive" only responding with fear when moved and by eating when she felt a spoon at her mouth. I knew that on this visit I would no longer see the light of recognition in her eyes that meant so much to me the last time I was with her. And I knew that the interaction I shared with Cathy and my sisters, the last time I was there, would not be repeated.


I want to tell you about that visit. We sat around singing the old songs that we used to sing as children while cleaning the kitchen or on long car trips. We sang those songs that evening at the top of our lungs, all smiling happily, swaying with the music. Cathy seemed so happy, as she hummed and remembered some of the words. I treasure that evening: It seemed we were not thinking of how much had changed, or that we were "losing Cathy." We were just happy to be with her, and that was a wondrous gift.


But on this visit, I knew she would be "vacant," like my home health Alzheimer's patients had been. I feared that it would seem that we were all just waiting for her body to join her mind, just as it had seemed with those home healthcare patients. As I prepared myself for this visit, I recalled recommendations some wonderful nurses who specialize in Alzheimer's care made to me. One can truly value and enjoy the time one has with late- and end-stage Alzheimer's patients by interacting with them at their stage within the Retrogenesis Model of Alzheimer's Care, developed by Reisberg et al. (1999).


In this model, caregivers match their interactions with the developmental level of the patient. The key to this evidence-based model is to recognize the patient is traveling back through the stages of development as the dementia develops. So, a patient in Alzheimer's later stages is developmentally similar to a child of several months. How does one lovingly engage with an infant? One smiles, speaks sweetly, sings softly, rocks, hugs, and delights in the infant. This does not mean "treating the patient like a baby." It means meeting the patient where the patient currently is. It means using the caring acts we use when a person can't communicate because of emotional, developmental, or cognitive problems. It is analogs to Chapman's (2010) "sacred encounter" or Watson's (2005) "caring occasion."


I decided that I would try this approach on this visit. I would engage with and love my sister in the language she would understand now. I would be with her and appreciate her in her now, and not from where she had been before. I would be in the moments I had with her, and love her and them as much as I possibly could. I would appreciate my "now" with her.


And that is exactly what I did. It was a magical experience for me-a transforming, transcending experience-as something in Cathy seemed to become luminous and serene as I sang, and told her everyone who loved her. I hugged and rocked her as well as I could. It seemed magical for her too. And in that time, something of her deepest essence, of her spirit, was present to the deepest part of me. It doesn't make much logical sense, but it gave me the deepest feeling that this is a more-than-an-empirical world, and that Cathy and I were deeply truly together more than if we were having the deepest discussion.


I still believe "there is a time to live and a time to die," and that we shouldn't hold on too tightly when it is time to let go. But I will never ever think of an Alzheimer's patient as being "vacant" again.




Chapman E. (2010). Radical Loving Care. Nashville, TN: Erie Chapman Foundation. [Context Link]


Reisberg B., Franssen E. H., Hasan S. M., et al. (1999). Retrogenesis: Clinical, physiologic, and pathologic mechanisms in brain aging, Alzheimer's and other dementing processes. European Archives of Psychiatry and Clinical Neuroscience, 249(Suppl. 3), 28-36. [Context Link]


Watson J. (2005). Caring science as sacred science. Philadelphia, PA: Davis. [Context Link]