There is no fear in love...

In addition to my HISC role as a trainer of CAREGivers, I serve part time at a facility in our community, through which I have the opportunity to work with individuals who have been diagnosed with Alzheimer's or other dementias. While this role is not considered as part of my HISC job description, this service is vital to my role as it provides me the opportunity to learn new insights about how to train HISC and family caregivers about some of the difficult elements of caring for a person with dementia. Recently two interactions I had struck me as important because they related to the fear caregivers might encounter when communicating with someone who has late stage dementia. Focusing on our own fears can sometimes prevent us from being able to engage the persons suffering and help diminish their fears.

My role at this facility is non-medical, so I assume the nurse who offered the following advice assumed I would be out of my comfort zone and was trying to spare me from a difficult interaction. She said, “There’s someone else you can meet, but she has severe dementia, so just say hello and move on.” At first read, this statement might seem callous, but I find that this sentiment is quite common when encountering a person with dementia, especially if they are in later stages. In fact, admittedly, “saying hello and moving on” was the exact method I took with another individual until I read some helpful information from the book, “The 36-Hour Day” by Nancy Mace and Peter Rabins.

“Ben” is an older gentleman, who has been described as in the later stages of dementia. He can generally be seen wandering through the hallways mumbling to himself and then occasionally yelling out “what?” when you are speaking with someone else across the room. Most of the other residents do not engage him and the staff often works to manage his behavior by bringing him back to his room. At first, I followed suit. From my training, I knew to remove individuals from the environments that seem to be agitating them and because Ben did not seem to understand much of what people were saying to him, I thought less conversation worked best. If I did speak with him, I nodded or offered the occasional, “Ah okay,” repeating what he said in the first place. I thought I had been living in his reality. However, Mace and Rabins explain that often times, persons with dementia are unable to communicate logically, but that the feeling behind the awkward communication is usually accurate. Thus, they recommend that caregivers ask simplified questions to get to the root of the problem. So earlier this week, when Ben was talking about the boys who were getting into trouble, instead of saying something simple like, “Boys will be boys,” I paused and asked, “Ben, are you worried about the boys?” And Ben looked up and said, “Yes. I’m worried.” I continued. “Why are you worried about the boys?” “Because I’m not going to be able to pick them up, and they always get into trouble when I don’t.” I responded, “Well Ben, I’m sure someone else is picking them up, so there is no need to worry about the boys today.” “Really?” Ben asked. “Really,” I responded. “Okay.” Late when I was talking with someone else, I heard Ben talking in the background, “She said the boys are going to be okay. No need to worry. The boys are okay.”

There is so much we have yet to learn about dementia, that I can’t even be sure that Ben actually calmed down or even made the connection about what I said, or if he was just repeating me. And, even if this interaction was successful, there’s no guarantee that it will work like this again with Ben or with any other individual. However, what we can learn is that just as we learn that nonverbal gestures are often linked to an underlying emotion or need, mumbling and jumbled verbal communication can also be linked to an underlying emotion as well. So living in the person’s reality and going along with what they say might just be half the experience. Asking them more about their feelings might engage them even more and help to decrease fear they might be struggling with, which often times is greater than our own.  

The Narrative Experience

I sat with "Vincent" in his bright pink dining room, pictures of his family mounted on the walls, and a faux pipe organ speaker set in the corner.  We began the interview as I had with the prior 6 and asked what story he would share with me about his experience nearing the end-of-life.  He spoke of his faith and belief that evidently his time was approaching and if the Lord decided his life was ending, so be it.  As he shared his attitude that "if he was going to die, he was going to die" he stumbled over his words.  In a moment, I realized he had started to cry and he revealed more of these emotions when he removed his glasses and began wiping the tears that began to gather.  I couldn't help but begin to cry myself.  In the past, I battled my own emotions for the sake of being an impartial researcher.  Later, when I realized that there was no such thing as impartiality in research, I began to embrace my emotions and join participants in their journey by ignoring these reservations about showing my own vulnerabilities.  I never fully wanted to admit to advisors or committee members that participating in interviews in such an emotional way was my identity as a researcher, for fear of disapproval, until Vince uttered the exact thoughts that were on my heart:


M: Okay.  How do you think your family and friends would react to the story you shared with me today?
V: This story?
M: Yeah.  I mean either this story you just told or the first one.
V:  I think that they would probably react about like you did.  Probably about the same.
M: What do you mean by that?
V: Well, you were uh became quite involved in it.  It was something that you hadn’t heard before.  And you, you became part of it.  Very suddenly and uh, I appreciated that.

I argued this same sentiment at a conference earlier this year... to listen to a participant narrative is to become part of that person's narrative.

Overheard in the emergency room...

I was just in part of the emergency area of the hospital when I overheard an intake interview:

"Mr. Jones, did you have any advance directive paperwork filled out, like a Do Not Resuscitate order? Don't freak out, I'm not implying anything. I'm required to ask everybody."

"No. I don't have one."

"Did you want to fill one out while you're here at all?"

"No. I'm fine."

'Til Death -

I 

I had never been on rounds before. I had never really known what they consisted of, other than what I had seen in the typical hospital TV drama. And I certainly had never seen what the palliative doctor actually does. 

I should have been prepared, given my area of research. I knew that palliative care is a type of health care in which providers attend to the patients' needs beyond simply the physical. Palliative doctors work to provide emotional, psychological, and spiritual care, recognizing that the patient is more than the illness. As most people do not realize that palliation is an option until they are faced with a terminal illness and are not improving from standard medical intervention, palliative care is often inaccurately equated with hospice care. Although I knew the textbook explanation of palliation, I was not at all prepared for what the day had in store. 

We had just met with three individuals who were discussing discharging their mother's best friend, to move her home and begin care in a hospice program. I listened quietly as the doctor asked what they would do when the patient's health declined and she was unable to care for herself. I was fascinated by the fact that the three family members and doctor calmly discussed the course of care, simultaneously negotiating the logistics, while also recognizing and paying homage to the patient as a person. The group made the whole conversation look skillfull. I guess you could say, the first experience of the day was somewhat what I had expected.

We left the family alone to talk and turned down a hallway to visit with another family member. We were heading toward a man who was sitting temporarily in a hospital wheelchair. He was shaking slightly and staring nervously at the open room across the hall. I followed his gaze, and to my right I saw 8 or 9 doctors, moving quickly in yellow, sanitary gowns, gathering around a hospital bed. I couldn't see a face, but I noticed a bare, swollen leg on top of the bedsheets. I looked back to the man in the wheelchair. He continued to shake, and I glanced to Dr. Broderick and the orthopedic surgeon, as they began talking about the woman in the other room.  

"He's really anxious," the ortho explained, referring to the shaking man in the wheelchair, who I later learned was Ron. Dr. Broderick motioned for Kavin and I to pull up a chair. I set a chair next to Ron and tried to listen to the doctors' conversation. I soon learned that it was Ron's wife's swollen leg, I saw peering out from under the bedsheets. Dr. Broderick busied herself in the room with all the other doctors, as Kavin and I tried to distract Ron. Ron told us he and LuAnn were married in 1950. He smiled as he reminisced, but each time he referred to his wife or their family, he stared nervously at the group of doctors blocking his view and began shaking more uncontrollably. We continued to talk in soft voices, asking him to tell us about his granddaughter. Ron had just shown us pictures as Dr. Broderick came back and pulled up a chair next to us. She didn't have to begin with "It's not good," because we already knew. Dr. Broderick began explaining to Ron that his wife's lungs were surrounded by fluid and that anything they did to try to drain the fluid would be invasive and likely unsuccessful. 

Ron's eyes started to well with tears as Dr. Broderick spoke. I was fighting back my own tears as I reached out and put a hand on Ron's shoulder. Dr. Broderick asked Ron if she could call her daughter. The phone rang a few times, and Dr. Broderick, Ron, Kavin, and I all waited in silence for the daughter to answer the other line. 

Dr. Broderick finally spoke, "It's not daddy, it's Dr. Broderick" she began. I barely listened to the details, instead I was looking at Ron, watching him transition from uncontrollable shaking to staring at the room, glancing at Dr. Broderick, and looking at the clock. He was agitated and rightfully so given we had just overheard Dr. Broderick tell Ron's daughter that Ron's wife of almost 60 years had only days if not hours of life left. Ron's eyes welled up again. Dr. Broderick said, "Yes, he's aware. He's hearing everything I'm saying." Ron chimed in, "Tell her not to worry about me, I've taken my medication." 

Dr. Broderick relayed the information, and we all listened quietly as she finished the phone call. She handed the phone to Ron. He tried to make lunch plans with his daughter, who was on her way from another city, trying to make it in time to see her mother alive. Ron mentioned some pizza that he had in the refrigerator at home. I rubbed his shoulder. Ron got off the phone, and the doctors in the other room were lowering LuAnn's bed. They left the room and discarded their gowns. I couldn't help but think that this small act symbolized the giving up and the beginning of LuAnn's dying process. Dr. Broderick told Ron he could go in and sit with his wife. Ron made his way to her room, and I carried a chair in to place by the bed. Ron sat down, seemingly unsure of where to look, and finally his eyes rested back on Kavin and myself. 

We put on gowns, entered the room, and knelt by Ron's chair. It was eerily quiet, the room was dimly lit, and it was only then that I saw LuAnn's face. Her eyes were closed, as she struggled to breathe, with her husband and two strangers taking watch by her bed.

Don't you forget about me.

As soon as I read chapter five on “Nonabandonment” in Quill’s Caring for Patients at the End of Life, I knew immediately which underlying value and assumptions to discuss, as an experience I had with Walter left me with several questions about hospice care. In chapter five, Quill argues that nonabandonment should be a central obligation of physicians, as physicians should focus on nurturing a continuous relationship between themselves and patients. Quill explains that the relationship between patient and physician need not end with diagnosis or even the first or last medical procedure. Rather a long-term relationship between the physician/patient, which lasts until the patient dies or recovers, is of utmost importance. Essentially, nonabandonment highlights a relationship which involves an open-ended commitment.

Of course, Quill acknowledges cultural and systemic issues which affect the ability for physicians to engage in such relationships with patients, as he notes the prevalence of managed care systems, and this latter note is one I wish to take up, given my conversation about Walter this week.

I received a phone call on Tuesday morning from the hospice music therapist. She informed me that Walter was being discharged. I had never heard this term used before, so I asked her to elaborate. She explained that Walter was improving and no longer met the Medicare requirement of a prognosis of death in less than six months. I asked her if that meant that Walter had graduated, a term I had heard used in the past. “Yes,” she replied, “we often use those terms interchangeably.” She continued, “So that means you can visit him until the 11th according to Medicare.” “Thank you for letting me know,” I responded.

After I hung up, I continued thinking about what she had said. I would not use the terms ‘discharge’ and ‘graduated’ interchangeably, given the conversations I’ve had with Walter. 'Graduated' implies that all should be happy and joyous, as Walter has escaped death for a while longer. Given the fear of death in this society, being able to avoid death is commended. However, Walter still has prostate cancer. He has not been cured, and although the providers suspect death is not as imminent as it was before, Walter is still dying.

Walter has some psychological and emotional needs and was benefiting from visits with people from hospice. On more than one occasion, he mentioned that he did not know what hospice, or as he calls it ‘hostel’, was actually all about. However, he often accounted that when he needed to talk and was about to call hostel, someone always arrived before he even called. He was beginning to understand that hospice could be there for him, when he needed them most. He could count on hospice and believed that hospice served more than just his medical or physical needs, as they provided listeners for him to talk through his fears with.

Walter often spoke about friends who had committed suicide and admitted his thoughts about such decisions. The only friends he could speak with about these concerns were suicidal themselves, and so I believe Walter began to count on hospice personnel with whom he could engage in these conversations as they were possibly less-biased than his friends.

And now, Walter has graduated – or more accurately, Walter has been discharged.

I understand that I can still visit Walter on my own and be the listening conversant he might need. I also understand that hospices cannot afford to offer services to all individuals unless paid for by Medicare and that Walter does not meet those requirements anymore. However, I am not sure if Walter understands. He has just gotten to a place where he believes he can trust in and count on hospice and I’m not sure if he will understand where his newfound relationships have gone. I also understand that most likely, Walter will be a hospice patient once again, and so these benefits might again be realized in the future; however, I think he would benefit from hospice in the present.

To me, I feel as though Walter has been abandoned. I appreciate that Quill acknowledged the systemic issues with the philosophy of nonabandonment but having seen Walter’s experience, I’m wondering what happens, specifically in hospice, in those moments when patients graduate or are discharged. Does nonabandonment involve switching patients to palliative care, which offers holistic services without the same hospice requirements? Will hospice personnel strive to not abandon Walter and ensure that he receives palliative care? How did they explain this change to Walter? Will Walter’s family feel the strain of losing the extra support?

in your eyes I am complete

I walked into the establishment where Walter lived. I don’t know if I actually liked the place, or if I saw it in stark contrast to other nursing homes I had visited or even the previous building that housed this establishment. I had just visited the space this nursing home once occupied. There were few cars in a neighboring parking lot and the doors had clearly been boarded up. The outer decay of the building fit with the assumption that several people had died there. I don’t know if my positive evaluation of Walter’s new home was a result from seeing the previous building or if I was thinking about the stark white interior of other new nursing homes I had visited. Nursing homes in which daily life was so clinical and patients were left sitting in the hallway, unnoticed by nurses who busily walked past them.

Walter’s home was different.

The walls were a warm bronze color. Several dark mahogany desks welcomed visitors, under bright but inviting lights. Large leather armchairs were positioned in front of several large TVs. The man who directed me to Walter’s room asked if I had visited there before. I said that I hadn’t and asked how long they had occupied this new building and if the older one on 20th avenue was their previous establishment. The manager proudly recounted his story about the move and renovations. He smiled as he motioned toward Walter’s room. Yes, this place was different, I thought. Very different.

I entered Walter’s room and found the 80 year-old man sitting in an arm chair by his bed, a copy of the local newspaper on his lap. I introduced myself as a hospice volunteer and sat down. I had been told that Walter had a good long-term memory but often struggled remembering events from moment to moment. He began by trying to explain why he had called hospice in the first place. He provided me with his understanding about what hospice care is, not unusual for patients to open with. I’ve always found it interesting that patients seem determine to let hospice representatives know how much they understand. I quietly listened to his explanation and told him I just wanted to visit, and he didn’t have to have a reason for wanting to visit with anyone from hospice.
He paused for a moment, staring at the wall to the left of us. "Maybe I called to talk about what I'm feeling. You know not everybody talks about their feelings, especially around these parts. I had a friend who wouldn't talk. He would just go to his house, pull his car in the garage and shut the door. He forgot to turn off the car. He didn't talk to anybody, he just put his car in the garage and forgot to turn it off. I don't know how you do that." 

This moment caught me off guard but not as much as the moment that soon followed. I shook my head and said that it was a shame he didn’t have anyone to talk to about it.

“Sometimes I think about that.”

“What?”

“I had a friend I used to get coffee with. I was talking with him the other day. He said that if he ever had to go to a nursing home, he would probably put his car in the garage and forget to turn it off. I don’t know what to say about that. What do you say to someone who says he would forget to turn the car off if he had to live in a place like this?”

I was speechless. “Wow. I’m not sure what I would say.” I frantically searched my mind for something to tell him. He didn’t seem to be asking me as one person to another, seeking another perspective on existential issues, but he seemed to be asking me as if he thought I, as a representative of hospice, knew exactly how to respond. In that moment, I started to rethink all I had studied, trying to come up with something to say. How could I have studied this subject for so long and not be able to come up with a single thing to say?

“Sometimes I think about that,” he repeated.

I paused. The silence in the room was deafening. Walter looked as though he was going to say more, so I waited for him to continue. He looked around the room, and I took a moment to glance around as well. The paint and draperies I had noticed earlier as being a warm, comforting color suddenly looked dull and stuffy. The rich golds and maroons seemed heavy and depressing, and I began to realize that Walter’s perspective of the nursing home might be much different than my interpretation as an outsider. I looked back at Walter sympathetically. Apparently he was not going to offer anything more, so I asked a follow-up question.

“You do?” I thought that by repeating his questions or by asking simple exploratory questions, I could keep him talking, which I knew seemed to be cathartic for many patients.

“It would be easy-” he continued.

I held my breath.

“-but then I tell him, ‘well, I’m ready to go at any time, but I guess I just want to see what tomorrow looks like.’”

I exhaled. “That’s a great answer.” Walter chuckled and changed topics. We talked about his wife, family, younger years. We had a great conversation and after about an hour, I left and told Walter I would be back in a week.

As I was driving home, I continued to think about Walter’s question. I had never expected a patient to suggest that s/he thinks about suicide. I know it might seem odd that it had never occurred to me before, but in all my research, I had found that suicide rates were low for hospice patients. A friend’s father, an architect, once asked me for a consultation on a hospice build. He was concerned with the rooms being on the second floor with a balcony. He was worried patients would become depressed and jump. I had tried to reassure him with support from research about hospice and the basic reasons patients are even at in-house settings, but this moment with Walter made me doubt any previous knowledge I had. Gone were Walter’s friends, love of his life, well known community members. Walter was alone, except for a few visits from his daughter and phone calls with his suicidal friends. I became very concerned for Walter and decided that I would be his new friend, his constant companion.

This interaction made me think about research I’m learning in another class of mine. I’m enrolled in a graduate seminar entitled: Communication, Constructs, and Identity. In this class, we cover personal construct theory and symbolic interactionism. Symbolic interactionism posits that we can only learn about ourselves through interactions with others. We behave in a particular way and others provide us with the language to understand ourselves in the moment. In other words, our experiences become meaningful through interaction and reflection, and these experiences in turn shape how we see ourselves (Mead, 1934). Mead argues that any action an individual does is made meaningful only through an existing cultural framework. Duck (2010) offers the example of a child who touches a hot stove. When an adult reacts by saying “That's hot; and I bet it hurts”, the adult is giving linguistic terminology to the child’s material experience (p. 23). The child then learns not only what is meant by ‘hot,’ but also that others are able to interpret the her/his experience as well. Essentially the child’s sense of self develops through social interaction. Thus, I can only understand me, my feelings, my experiences, through others. I know me through others.

My interaction with Walter – how do I see death? How do I experience a place, a setting, a moment? Personal construct theory posits that we have to be able to anticipate experiences in order to form constructs about them, which forms our identities, but I could never anticipate how living in such a place, a nursing home, would be had it not been for my interaction with Walter and his inviting me into his narrative.

Still. living.

Susan did not die that day, and when I went back to visit a few days later, it was long after breakfast time. It had been a long day for me, and I didn't feel like driving 15 miles out to visit Susan. I knew I was being selfish, but I also recognized my feelings as realistic and normal. Volunteering is thought to be selfless, and I often am congratulated by others when they learn about what I study, but there are days when it becomes tiring to make time for visits. Immediately after I have these thoughts, I of course feel guilty, often thinking back to moments such as Susan's breakfast when I realize that some of the people I visit are all alone and would probably never hope to die with an untouched breakfast tray in front of them. After a few moments, I knew I needed to go see Susan, so I headed back to the nursing home.

I headed for Susan's door, as a nurse was just leaving her room. "Is Susan awake? I was just coming to visit her." "Susan just died. A hospice volunteer was here a half hour ago, and she died. She's all clean now and the windows are open for a breeze. We're calling her family, but it'll take them a while to get here if you wanted to stop in." I froze for a moment. When I had visited Susan days before, she was on final days, so I knew it wasn't going to be long. However after the weekend went by, Susan was still alive, so I suppose I wasn't expecting to hear that she had just died. I had expected to be the one sitting with her as she eased out of this life. I told the nurse I would only be a few minutes. I went into Susan's room and found her very much like she had been days before. Her eyes were barely closed and her mouth was half open. I touched her arm. Her skin still felt papery and slightly warm. When Susan was alive, her breathing was so slow that often she appeared to not be breathing at all - a look not much different than she appeared moments after her death. Since her skin was still warm, she even felt as alive as she had days before. At first glance, it was difficult to believe that Susan was actually dead. I looked at her face and then noticed her left ear had started to turn blue. I knew then that Susan was dead. I said a quick prayer, thanking God for Susan's life, and praying for her soul, and I turned to leave the room. Just before I headed out the door, I glanced back once more at Susan. Out of the corner of my eye, I saw the Yahtzee game sitting on the dresser and thought about how we had never gotten to play even one game.