Meaningful Moments and Missed Opportunities in Long Term Care
By Ann M. Callahan, PhD, LCSW
Social Work Today
Vol. 22 No. 4 P. 14

For social workers in these settings, it can be a rough go. However, building relationships with residents can lead to cherished and unforgettable experiences.

I will never forget you,” I said on my last day. There were so many people to remember and moments we shared in my work as a licensed clinical social worker. I worked in long term care facilities for a company that was contracted to provide mental health services for residents. This started with a mental health assessment followed by short-term, individual psychotherapy upon doctor’s order. Some nursing homes were so large that I shared residents with another mental health provider, usually a psychologist. We relied on a psychiatric nurse practitioner for medication management. I saw an average of eight residents a day for 30- to 40-minute sessions.

Residents generally needed support in adjusting to admission, coping with chronic illness, or preparing to go home. For some, the nursing home was their final destination. I worked with some residents who were admitted just for rehabilitation. Most, however, were admitted for long term care. Specific interventions varied, but our shared goal was to support life quality gleaned through relationships. This approach was most successful when staff invested in care. This translated into a clean facility as well as access to good food and sitting areas animated by conversation.

Residents were referred by doctor’s order when they had “behaviors.” My focus was on building relationships with “people first.”1-3 People had a name before and after long term care. For the residents, I had a name, too. One resident called me “her listening friend.” I did not always know what to say, but I did know how to listen, or at least I thought I did. While I listened to many things, moments of connection and missed opportunities to build relationships made the greatest impact. Some of these relationships were experienced in a typical day.

Brenda
There were residents who did not wear false teeth or hearing aids, which made them difficult to understand. Medical conditions left some residents minimally verbal. Medical devices, technology, and visual aids were available to help. One resident, named Brenda, was also in rehabilitation through which she learned to use a speech tablet. Brenda pressed icons to speak aloud with an electronic voice. While this enabled Brenda to express her basic needs, there were no buttons to press for Brenda to express how she felt being newly disabled with the need for nursing home care to engage in activities of daily life.

I studied Brenda’s medical record to learn more about her baseline functioning and talked with her daughter over the phone. Nursing home staff provided additional information about Brenda’s daily progress. They reported on Brenda’s activities, progression of treatment, and emergent needs. Then Brenda showed me pictures of her family, mementos, and artistic creations to share her own perspective. Sometimes we communicated by writing, which I further intuited by reading Brenda’s expressions. What I gathered was most significant to Brenda were not reports on her progress but the quality of our relationship—knowing someone cared.

Sue
During one visit, I heard a resident from across the hall cry out, “God, please let me die.” This resident was bedbound with late-stage dementia. I worried that her cries suggested spiritual distress as she lingered between two worlds. While I tried to connect with her, she seemed unable to do so. I focused my attention on her roommate, Sue, for whom I had been referred. Sue was intrepid despite bearing witness to her roommate’s distress. Perhaps this was, in part, due to Sue’s cognitive and physical capacity to get her own needs met. Sue was quick to express her autonomy in the facility through relationships with people, too.

Sue beamed with pride, “I used to work here.” She had been a housekeeper at the nursing home until she retired a few years earlier. I was called to evaluate her cognitive function. Sue admitted to forgetting to turn off the stove at home, which scared her because she lived alone. Her son was a truck driver who, she lamented, rarely visited or called. Sue did not approve of her son’s wife, who, she believed, kept him away from her. But as we worked together, her resentment subsided. Sue, who often said how happy she was to be in the nursing home, was finally getting much-needed help that was bolstered by visits from a housekeeper Sue knew when she was working there.

Madge
I worked with a resident who talked so fast and low that I could hardly understand her. I leaned in, nearly touching her mouth with my ear to listen. One day, in an effort to connect with her, I asked, “Do you like to sing?” She murmured and nodded yes. We sang, “I come to the garden alone, while the dew is still on the roses, and the voice I hear falling on my ear.” At last, Madge’s voice was strong and clear. We sang every gospel song we knew, and our spirits soared with our voices, but Madge’s ultimate expression of her voice was to end our relationship.

Madge wanted to move to a facility closer to home. Being the person at the nursing home who coordinated care, I thought this was something I needed to share with the social services staff. This disclosure had unintended consequences, however. While it was true that I was required to coordinate care with the social services staff, Madge perceived my sharing as a violation of her trust. Despite my effort to explain, it was too late. I needed to make amends. Before disclosing, I should have educated Madge about my duty to coordinate care with social services staff and ask if she was comfortable with my decision. It could have strengthened our relationship rather than undermine it.

In another case, I missed the opportunity to engage in a relationship even before it started. I had just left a resident’s room when a relatively young woman in a wheelchair caught my attention. She asked softly, “How do people get to talk with you?”

I said, “The nurses refer them to me.”

I wondered whether she knew the resident in the room I had just left. I feared further explanation would violate my client’s right to privacy. It was difficult to maintain privacy. Residents often shared rooms, which required me to time our sessions for when my client was alone unless I could find a private location in the nursing home where we could meet.

I never received a referral for that woman. Perhaps I did not hear what she was saying. Even though she did not appear distressed, I could have talked with her more to find out why she inquired about my services. I assumed she would be referred if she needed my care, but maybe only if she was deemed problematic. Was I complicit in leaving her to suffer in silence? This particular nursing home felt cold and institutional. The nursing home staff were always too busy. They did not voluntarily talk with me. There was turnover in the social services department. The nursing home administrator was hard to reach.

There were three long, dark hallways, each of which led to a nurse’s station. At the nurse’s stations, paperwork and medical records sat on the countertop next to a computer. A nurse’s cart with drawers of medication was parked nearby. Nurses buzzed in and out. While this configuration was consistent across most nursing homes, each resident’s room was a world unto itself. It expanded if you were lucky to enter.

Carol
There was always someone to care for in the nursing home, but not all of these relationships were obvious. Carol was referred to me due to her social isolation. Her small frame stood in stark contrast to her cavernous room. Carol’s bed was by a window that had beams of sunlight shining through. She had few belongings outside of her television. Her roommate was visiting family in preparation for her discharge home.

Carol, who would likely live out her life in the nursing home, needed help with activities of daily living, such as repositioning herself in bed and covering up with a blanket, but she never complained.

Carol spoke with a gentle Southern accent about her past, which seemed as simple as her present. She described growing up in a rural community marked by hard work, family, and church. Carol had outlived her family but seemed to accept this. When I visited Carol one day, she wrote with shaky hands, “God’s a real friend,” and drew a line through it. Then she wrote, “God is real.”

I wondered whether Carol had realized God is real through their relationship. Carol then asked me if I believed in God. I generally did not self-disclose with clients, but in this case, I affirmed. Carol smiled with ease and knowing satisfaction.

Carol’s relationship with God seemed to lead to a quality of life that was beyond the surface, beyond measure. For Carol, perhaps it was this liminal space between life and death that fueled a meaningful relationship with God. Relational autonomy was not always possible due to a resident’s functional need for nursing home care. Even with professional caregivers like myself, building a meaningful relationship could be challenging at times. Therefore, residents sometimes needed help to access relationships, like any other resource, to sustain quality of life. This expression of relationship varied across persons and places.4,5

There was a chaplain with whom I consulted. However, the amount of support he could provide was limited. He was the only chaplain in this very large place, which always left him running. In a different nursing home, the chaplain was a pastor of a small Baptist church, but he was not board-certified. He walked around the facility singing gospel songs accompanied by a ukulele. This seemed uplifting, but it was not always spiritually inclusive. There were some nursing homes without a chaplain. Residents had to have the capacity to go into the community for spiritual care or rely on community volunteers when they were available to visit.

Jeannette and Joan
Sometimes, all that was needed was a single moment of connection. Jeannette paced around, testing random doors. “I have to go home to check on my son. He is alone,” she said. I tried to reassure, reason, and redirect her but had little success.

One day I found Jeannette sitting calmly. “I know why I am here. It is because I get confused,” she said. I was startled by Jeannette’s clarity.

“Yes,” I said, “that is correct, and we are here to help you.” Jeanette’s thoughts wandered back into a world I did not know, but from that point on, she no longer attempted to leave.

Likewise, despite having dementia, a new resident named Joan described with unusual clarity, “My husband was sitting in the lobby for a long time today.” Joan seemed full of excitement.

“Really?” I asked. “Did you talk with him?” I wondered about Joan’s potential for psychosis since her husband was, in fact, deceased.

“No,” she said, “but I think he wanted to make sure I am OK. It made me feel so happy to see him.”

“Good!” I responded.

We talked more about her experience until Joan’s brightness began to fade. I abbreviated our session for Joan to rest after an exhilarating day.

Jimmy and Jean
To ensure resident access to support, there were times I had to intervene directly. Each time I visited Jimmy, he would ask, “Do you want some crackers?” I felt uncomfortable accepting, but it seemed disrespectful to decline. I was, in fact, visiting Jimmy’s home. He recalled stories of past adventures, shared his love of old westerns, and detailed his recent family visits. Then one day, Jimmy told me, “They were rough with me.” He referenced his arm and indicated the staff was rushing him when he was trying to wash up. As required by law, I had a duty to report this immediately to the nursing home administrator.6 The social services staff were there to assist in follow-up.

Jimmy was fine, but my next resident was not. I met with Jean, who was not complying with staff requests to ask for assistance when she walked. Jean acknowledged that she had been unsteady. “I press the call button for help, but they take so long to respond,” she said.

I told her I understood but stressed that the nurses were worried. Jean pointed to her feet, noting that she was wearing her new tennis shoes to avoid a slip. Jean had on red canvas shoes with white rubber soles. She looked at me in earnest. Later that week, Jean fell and died of a brain hemorrhage. Jean had no family. I wondered if I could have been a better advocate.

While it was difficult to cope when relationships ended suddenly, it was not unusual. I continued to focus on cultivating meaningful relationships that supported life quality.4,7 As persons-in-relationship, I treated residents with unconditional positive regard, respect for resident dignity and worth, and as a valued partner in the therapeutic process. 8 I relied on resident autonomy and self-determination to identify what relationships were needed and how to make those relationships possible.9-14

Anthony
Anthony was being combative with rehabilitation staff who attempted to assist him. I met with him to find out why. Anthony was tall, relatively young, and dignified. Pictures of his family hung on the wall all around him. I never saw him outside of his room—he stayed in bed watching television or sitting in silence. I took time to connect with Anthony by relying on sessions that were short and light. One thing Anthony spoke about often was going home. “I will be able to walk out of this nursing home one day,” he swore. Anthony grabbed a handrail to demonstrate he could pull himself up, and then stretched a resistance band to flex some more.

With Anthony prone to anger, I was careful when I asked him questions. On the other hand, Anthony spoke little about what was going on inside of him. His desire to go home and his rejection of rehabilitation staff seemed inconsistent. Anthony conceded, “I need to do a better job at controlling my temper.” He went on to describe how he sometimes felt disrespected by the rehab staff. Anthony admitted being afraid to leave his room, but the rehab staff pressured him to walk down the hall for physical therapy.

As we processed his frustration as well as opportunities for a solution, Anthony’s anger toward his wife bubbled. He said she would not let him go home after his stroke. We talked about his wife’s physical limitations in being able to provide him support and how it impacted her ability to care for him at home. Did Anthony feel betrayed by her or by his body? At the end of our session, Anthony began to cry. He said, “Why did this have to happen to me?”

“I do not know, but I am sorry.”

I am unsure whether Anthony was able to reconcile his feelings, but I made an earnest effort to fulfill my duty to care, and in doing so, I will never forget seeing his joy in being able to walk down the hall.

Cherish the Moments
Moments of prolonged suffering when daily life becomes a struggle. Moments of redemption in admitting unspeakable things. Moments of joy with newfound mobility after paralysis. Moments of peace when choices lead to a desired end. These are their stories, modified for privacy.

These stories describe the lives of people, not behaviors, in relationships. While there are nursing homes that are so busy it seems they only want compliance, there are opportunities to engage with residents as people first. Nursing homes are full of opportunities for relationships that can transform your heart.

— With more than 20 years of social work-related experience, Ann M. Callahan, PhD, LCSW, is a professor, program director, and online coordinator for the Master of Social Work program at Eastern Kentucky University. Her research focuses on spiritually sensitive social work in hospice, palliative, and long term care. She has written Spirituality and Hospice Social Work, published by Columbia University Press.

References
1. Fazio S, Pace D, Flinner J, Kallmyer B. The fundamentals of person-centered care for individuals with dementia. Gerontologist. 2018;58(suppl 1):S10-S19.

2. Kogan AC, Wilber K, Mosqueda L. Person-centered care for older adults with chronic conditions and functional impairment: a systematic literature review. J Am Geriatr Soc. 2015;64(1):e1-7.

3. Wilberforce M, Challis D, Davies L, Kelly MP, Roberts C, Clarkson P. Person-centredness in the community care of older people: a literature-based concept synthesis. Int J Soc Welf. 2017;26(1):86-98.

4. Callahan AM. Relational spirituality: An opportunity for social work in long-term care. Poster presented at: 6th European Conference on Religion, Spirituality and Health and 5th International Conference of the British Association for the Study of Spirituality; May 2018; Coventry, England. https://encompass.eku.edu/fs_research/277/

5. Kevern P. The spirituality of people with late-stage dementia: a review of the research literature, a critical analysis and some implications for person-centred spirituality and dementia care. Ment Health Relig Cult. 2015;18(9):765-776.

6. Department of Health and Human Services Office of Inspector General. Nursing facilities’ compliance with federal regulations for reporting allegations of abuse or neglect. https://oig.hhs.gov/oei/reports/oei-07-13-00010.pdf. Published August 2014.

7. Counted V, Possamai A, Meade T. Relational spirituality and quality of life 2007 to 2017: an integrative research review. Health Qual Life Outcomes. 2018;16(1):75.

8. Hudson R. Transforming communities in residential aged care. J Relig Spiritual Aging. 2012;24(1-2):55-67.

9. Callahan AM. Do atheists have spiritual needs at the end-of-life? National Association of Social Workers Wisconsin Chapter webinar. February 12, 2021. https://naswinstitute.inreachce.com/Details/Information/86d4273b-fdf9-479c-8bb9-1ac8118393c9 

10. Callahan AM. A virtue-care approach to spiritually sensitive social work. Paper presented at: Society for Spirituality & Social Work Annual Conference; June 2021. https://encompass.eku.edu/fs_research/487/ 

11. Callahan AM. Spirituality and Hospice Social Work. New York: Columbia University Press; 2017.

12. Ellis C, Hunt MR, Chambers-Evans J. Relational autonomy as an essential component of patient-centered care. Int J Fem Approaches Bioeth. 2011;4(2):79-101.

13. National Association of Social Workers. Code of Ethics. https://www.socialworkers.org/About/Ethics/Code-of-Ethics/Code-of-Ethics-English 

14. Reese D, Nelson-Becker H, Callahan AM. Spirituality and social work practice in palliative care. In: Altilio T, Otis-Green S, Cagle J, Brandon R, eds. Oxford Textbook of Palliative Social Work. 2nd ed. New York: Oxford University Press; 2022:39-51.