The Ministry of Doing the Same Thing Over and Over
(This was published in a recent issue of PlainViews, an online journal about pastoral care.)
Most of my hospice patients have dementia. I visit each patient about twice a month, and pastoral care for them is challenging. With most, there is no conversation, or if there is, it is usually nonsensical. The nonsensical conversations, often funny and entertaining, sometimes give me energy and motivation to continue my work. I love telling those stories to co-workers and friends.
I lead a support group for residents of an assisted living facility who have early dementia. They are not patients of mine but live in a facility where I go often. I usually get 8 or 10, and the truth is they usually have little idea why they are there or who I am. At the beginning of our group recently, some kindergarten children were brought in to give Valentine cards and hugs to the residents. (Apparently, I look like I belong there because I got a card and hug, too.) As the children were settling in and their teacher was getting organized, the woman to my left, who has attended every one of my support groups, asked me who I was and why I was there about 10 times. I answered every time that I was there to lead the support group, and she always said, “That’s good. We need it.” Once she asked if I was the guest speaker. That’s not precisely why I was there, but I said “Yes” anyway. After the cards and hugs were distributed the teacher began reading a children’s book to the children. The reading was also for the entertainment of the facility residents. After the teacher had read a few pages, the woman to my left turned to me and said, “I don’t think you have much competition.”
That type of exchange makes my work fun. On the other hand, there are dementia patients who say nothing entertaining and, often, nothing at all. They may mumble incoherently, stare blankly into space, or lie motionless and speechless. What does a hospice chaplain do in those cases? Here’s what I do: pretty much the same thing over and over: play music, meditate at the bedside, say a prayer, call a family member of the patient. I also check in with the facility staff to see if there is anything I need to know. This routine, over several months, can get tedious. Plus, I am easily distracted, and my attention tends to wander.
Here is how I try to make these encounters meaningful and, I hope, beneficial. Perhaps my describing these will generate some creative thought of your own.
When I first meet the patient’s family (usually over the phone), I ask if the patient has some favorite music. If the patient is a longtime Christian, I ask if they might enjoy hearing traditional hymns. On my portable music player, I play hymns that feature clear, strong singular voices with minimal background music, which works well with such patients, who are often hard of hearing. I’ll admit that playing music can sometimes be a crutch for a hospice chaplain. It’s a chance to feel like I am doing something while not saying or doing anything myself.
Music, however, can sometimes create a special connection. I had a patient who had almost completely quit speaking or responding to anyone, even his loyal wife, who visited him for several hours every day. Once when I played “I’ll Fly Away,” he opened his eyes and sang the chorus, then went silent again. His wife and I stared at each other in amazement. (Many hospice chaplains have stories like this.) Sometimes I’ll sing along, and a patient will stare intently at me, watching my lips move. I don’t know what that means, but something interesting is happening inside that damaged mind.
Music therapist Kimmo Lehtonen said in a speech, “Many pieces of music act like a transference and they immediately arouse strong memories, emotions and mental pictures from the listeners’ distant childhood or other meaningful moments in a client’s life. This also happens with demented people,
who still have their memories but the process of getting in contact with them is disturbed or difficult. A certain piece of music can remind them of many vital memories of different persons and especially social interaction with meaningful persons.” (Lehtonon, Kimmo (2005) Music as a possibility of chance – healing metaphors in music. [In: Aldridge, D.; Fachner, J. & Erkkilä, J. (eds) Many Faces of Music Therapy-
Proceedings of the 6th European Music Therapy Congress, June 16-20, 2004 Jyväskylä , Finland. p. 532-546. eBook (PDF ) available at MusicTherapyToday.com Vol.6. Issue 4 (November 2005).]
With that role of music in mind, I call upon the Spirit to move in the patient as the sound waves enter. Music can be comforting like voices of loved ones. I am aware that the main comfort that a minimally responsive, dying person receives when family or friends talk to them is probably a vague feeling of familiarity as he or she “hears” a close person’s voice. That familiarity may create a peaceful connection for the dying person and give the loved one nearby a way to engage meaningfully in a situation in which normal conversation is not possible. Music can provide a similar feeling of familiarity. As I meditate at bedside, I pray that the hymns engender peace for the patient—in some mysterious, unknowable way.
One of the many helpful remarks made by my Clinical Pastoral Education supervisor was the notion that I should use my natural curiosity about people to help me make a pastoral connection. He noted that I had been a writer and had utilized my curiosity in that field, so it could carry over into chaplaincy. Indeed, curiosity about what may be going on inside the mind of a dementia patient helps keep me engaged.
I read one theory about people in this stage of life that holds that they are sorting out their whole lives as they appear (to the rest of us) to be staring meaninglessly into space. If this theory is correct, whenever a dementia patient makes some seemingly incoherent remark about a long-dead relative, perhaps they are adjoining in their mind events that happened long ago with future re-connection in the afterlife, as well as with the patient’s current reflective state. I realize that is speculation, but it helps me maintain some sort of pastoral relationship as I sit quietly next to him or her, asking God to guide this person’s final journey. Those moments of deeply felt communing with another give me strength to continue as a chaplain when I feel as if I’m not making much difference, and I trust that those moments are bringing some benefit, perhaps a feeling of peacefulness, to the patient.
Calling family members after a visit is interesting at first. I’m getting to know the patient through their family, and I’m getting to know the family while I try to encourage them. Often, I learn interesting and endearing things about the patient. I frequently find myself thinking, “I wish I had known her 30 years ago.” Eventually, however, the calls become harder to make. I try to think of something new to say, and there usually is very little. In my mind, I make up excuses not to call; I feel a little embarrassed that I can’t think of something to say other than what I have already said. The calls eventually feel repetitive and tedious: “I saw your mom today. I played some hymns, sat at bedside, and said a prayer. I prayed for you and your family.” I realize I am revealing my insecurity by admitting that I feel hesitant to make these calls, but it is a challenge faced by many hospice chaplains. We want to help these families, not just be a prop in the room.
Usually, I do make the call, and even if I leave a repetitive voice mail, I make sure my tone expresses my joy at having sat by the patient. It is easy, without realizing it, to go into autopilot and sound bored and disinterested over the phone. I overcome the tendency to be perfunctory by remembering that this time in the patient’s life is sacred time. At what other time in a person’s life can I sit by their side and simply be a supportive presence with no external distractions? All distractions are my own: my restlessness, my short attention span, my need to feel like I am “doing something.” I remind myself that the music, or the silence, in the room can be a source of comfort for the patient. Doing so enriches my life simply for being there and for being so attentive to the movements (however slight) and sounds (however soft or incoherent) made by the patient.
If I take a moment before each call, breathe slowly, and reflect on the time that I have just spent with the patient, I can give the family member the attention and care that they deserve. The phone call changes from a routine duty to an extension of the pastoral presence I just experienced sitting next to the patient. Even if I leave a voice mail message, which is mostly the case, I can avoid sounding like one machine talking to another by remembering that each visit, even though it may appear to be identical to the last and the one before that, is a unique moment in the family member’s life. For most family of dementia patients, my phone call marks yet another two weeks of suffering through dementia. Waiting for someone to die and living with the guilt of wanting someone to die is emotionally draining, so every added week or month adds to the anxiety. If I keep this progression of the emotional toll on the family member in mind, I can treat even a routine voice mail message as extending pastoral care.
Hospice chaplaincy can be hectic as we drive from facility to home to facility, so I need to pause at certain moments, such as before a phone call to family, to allow myself to fully feel the gratitude I have for being in this work. The repetition can be emotionally stifling and can lead to chaplain burnout, so these moments are beneficial not only to the patients and their families but are also beneficial to me as I keep myself enchanted by hospice chaplaincy.
Occasionally, I reach an actual person on the phone, rather than their voicemail. In all honesty, I must admit that I am sometimes disappointed that someone answers the phone. That is a terrible admission, but chaplains get in a rush, and, as I have said, become self-conscious about leaving repetitive messages. But, sometimes, magic happens. I am delighted when I reach a family member and they say, as is often the case, “Thank you so much for your messages. I really appreciate your visits and your attention to her.” At those moments, I feel deeply the important reason for my returning to these patients over and over. Perhaps by visiting and calling, I am easing the family member’s guilt a little for not being free to visit more often. Whatever the reason, I am pleased to hear that those voicemails, which, on my end of the phone call, can sometimes feel empty and rote, actually come across on the other end as comforting.
These pastoral visits and phone calls to family members, if done consistently and with genuine compassion, prepare me for the patient’s final days and hours. If our nurse perceives that a patient’s death is imminent, he or she is placed on a continuous watch until death, so that pain and symptoms can be controlled. This is my favorite time to visit. At least one family member is usually there, and this is often my first time to visit them in person. By that point, my phone calls have established a pastoral relationship, and I am prepared to provide the subtle comfort that is appropriate for this sacred time. I can say a prayer that reflects the long, painful journey that the family has been through, as well as pray for the patient’s peaceful passing. If it seems appropriate, I gently evoke stories about the patient that lead the family toward healthy grieving. These stories connect their shared past with the reflective present. I can sit by the patient, as I have many times before, perhaps while holding his or her hand. All those repetitive visits lead to a satisfying, healing conclusion.
Jerry, I deeply appreciate your sharing these thoughts with us. It surely speaks to
many chaplains about their concerns for working with dimension-afflicted patients.
Thanks for sharing
Thanks for sharing this Jerry. Honest and helpful. Elaine Hoffman
Jerry, perhaps part of why you are now woking in this setting is to be a communicator for all of us who do pastoral work. This is sacred and beautiful in it’s breathe of understanding,, acceptance, and in the emotional toll it takes from the family and also the chaplain–and also for the rare jewels that are unmined in the process if one has the eyes to dig and to see
Thank you for sharing this Jerry. It speaks to me as a pastor, but more deeply as a person whose grandmother lived with dementia for a decade. I am so thankful that you are present to your patients and their families.