A Church Dis-Service in the World of Elder Care

The following is a true story. Names have been changed or omitted for matters of confidentiality.

Setting: An Institutional Model of a Skilled Nursing Facility, year 2008

Characters:

Ron,  a Pentecostal minister with no formal education

Jim,  a resident with Parkinson’s and possibly Lewy Body Dementia, a wheelchair user, time-and-place confused, a former football coach, and a devout Christian who sings with a beautiful vibrato and who has a background working with a famous televangelism ministry, now defunct

A crowd of residents assemble in the dining room. Pastor Ron is one of the local pastors volunteering on a rotational church service schedule. It’s his turn to take charge of the Sunday church service for the residents. He has a karaoke machine playing gospel music for inspiration as the residents arrive. Ron abruptly turns the music off and begins the service.

“The world is a dark place,” he begins and then proves his claim with evidence mention of a disgruntled neighbor and a college shooting. His message is a series of disjointed scriptural references and statements of personal opinion.

“Once upon a time, Isaac and Rebekah were makin’ out,” Ron says but is interrupted by Jim who begins singing a gospel tune with a beautiful vibrato voice.

“He’s got that Parkinson’s. Used to be a football coach,” Ron says to the audience, completely oblivious to the inappropriateness of his public remark about Jim.

“I’m a daddy. I’m a husband. I’m a Christian,” Jim interrupts, and then sings the first few lines of the hymn, “Be Thou My Vision.”

“You lost me on that one,” Ron says to Jim and then goes off on a spiel about the evils of catering to the young people.

“I think I just saw a miracle,” Jim states. “God gave me a song.” He begins singing the hymn, “Fill My Cup, Lord.”

“I want to sing the song, ‘My Tribute’,” Ron announces, flustered by Jim’s disruptions.

“Do you want me to get outta here so you can finish?” Jim asks, calling out Ron’s bluff.

Ron, a Pentecostal lay minister, takes off on another rabbit trail about speaking in tongues.

“I’ve been a recipient both ways,” Ron states regarding tongues and interpretation, oblivious to the notion that this topic is likely unfamiliar or relevant to his audience. “Acts chapter two means probably what it says,” he declares.

“’ My Tribute.’ That’s my theme song (a gospel song written in 1972 by Andraé Crouch, referred to as the “father of modern gospel music”),” Jim interjects. “How can I say thanks for the things You have done for me? Things so undeserved, yet You gave to prove Your love for me . . .”

“Let’s start over,” Ron interrupts and then turns on his karaoke machine. He begins to sing to the accompaniment track of a gospel song, increasing his tempo so that his vocals are off-sync to the beat of the music.

“You can’t go wrong with that one!” Jim declares and then begins singing along with Ron who continues, oblivious to Jim’s need to be heard.

“If you read the scriptures, ‘Why do you torment us before our time?’ some people don’t believe in evil spirits. I believe we have evil spirits,” Ron rants after the karaoke performance concludes, and then points out the flaws of other churches.

“Remember, Jesus loves you and I do, too. I gotta go deliver meals on wheels,” Ron declares as he prepares to close the service.

“Can I pray?” Jim interjects.

“I’m going to sing my own version of the big band song, ‘The Object of My Affection,’” Ron announces, and then turns the karaoke machine on and begins to play the accompaniment track. “I’m still workin’ on it.”

“Crazy, I’m a little crazy,” Jim interrupts.

“He’s changed my direction from death to resurrection,” Ron sings, ignoring Jim’s disruption. 

Jim sings the song, “Oh Happy Day” as Ron continues talking.

“I can’t keep up with that machine,” Jim states. “I wanna hear my voicebox.”

Discreetly, I get up from my chair and walk over to where Jim is seated, and lean into his face.

“You have a beautiful voice,” I whisper to Jim.

“It’s all Him,” Jim replies, pointing his finger upward.

“That’s the voice I use to get their attention,” Ron switches gears, elevating his voice to a much higher pitch. “That wakes ‘em up,” he says to me in front of the helpless onlookers. He turns his karaoke machine on again and sings, “I’m Forever Blowing Bubbles.”

Ron concludes the service and leaves the building while I walk over to speak to one of the employees about what I just witnessed.

“What do you think of the chaplain?” I ask.

“He’s harmless. What can I say?”

Addendum:

Is he harmless? Who is to say? As for me, I say we are doing our residents a disservice when we park them in front of someone who has no idea nor is interested in their actual needs and preferences, and who is unable to “read” the audience.

This is a real-life example of Theatre of the Absurd. Speaking of absurd, I think I would have rather the residents would have heard a sermon from a donkey than Ron. If you don’t think a donkey can preach, read Numbers 22 in the Old Testament.

Photo by Kareen King

It's What it Made Him Feel

Rapp Schoolhouse, Photo by Kareen King

“What do the Dust Bowl, Huntington’s disease, hillbilly music, The Grapes of Wrath, Grandpa Walton, the Ku Klux Klan, Woodrow Wilson, and Bob Dylan have in common?”

I looked at the blank stares from a semi-circle of Assisted Living residents, knowing they wouldn’t be able to answer the question, but loving the idea that maybe I engaged their curiosity.

“That’s o.k.! I don’t expect anybody to be able to answer that question, but it was fun asking it anyway,” I teased. “The answer is Woody Guthrie. Raise your hand if you’ve heard of him.”

A couple hands rise.

“Raise your hands if you’ve never heard of him.”

A few more hands rise.

“Well, once you hear this next song, you will all realize you’ve heard of Woody Guthrie.”

I proceed to sing his famous song, “This Land is Your Land,” inviting the residents to join in.

Over the next 45 minutes, the space was filled with evidence to support my opening statement, with special attention to the Dust Bowl. My reference to Woody Guthrie’s first album, Dust Bowl Ballads, the most successful album of his career, led to some invigorating discussion and reminiscence. The most fascinating story was told by 95-year-old “Millie.” She recalled how she couldn’t see past her hands and proved it by her account of what happened at her one-room school house. Apparently the dust was so thick that her school teacher sent the kids home, a decision that would undoubtedly cost her job had the same decision been made today. Millie proceeded to tell how she and her brother crawled along the ditches, using the fence as a guide to lead them home as they used their hands to grab the posts along the way.

I also shared about Woody’s hardships including his family living through three fires, his mother being committed to a hospital for the “insane,” losing two adult daughters and his mother to Huntington’s disease and one adult son to a car accident, his father’s debts that led Woody to beg for food on the streets and sleep in the homes of relatives at the age of fourteen, three marriages, and eventually Woody’s personal bout with Huntington’s Disease that led him to an early death at the age of 55.

“Can anyone relate to living through at least one tragedy?” I probed, as I watched heads nod and hands rise.

As our time drew to a close, I summarized our experience with the intention of facilitating some introspection for some of who were likely processing life resolution issues.

“Woody once said, ‘Let me be known as just the man that told you something you already knew.’ So, I’d like you to think for a moment about what you want to be known as to others, or for what you want to be known.” I submit.

I then move toward our one-and only centenarian.

“You’ve been on this earth 100 years, “Frank.” For what would you like to be known?”

Frank stares at me and shakes his head.

“I don’t know.”

“Hmmm . . . I want you to think about that for awhile. Let me try someone else.”

I move over to “Jean” and ask the same, getting a similar response. Not wanting to end our time together on a low note, I muster up an idea to redeem the situation.

Calling upon the rules of improvisation which include taking risks, I take the plunge.

“Okay. So, let me try something else. I’m going to go around the circle to each of you and choose one word that comes up for me about you.”

One by one I stand before each human being, look them in the eye, pause, and then assign them their word, hoping it resonates. The words come fairly easily including loyal, inquisitive, ambitious, introspective, feisty, admirable, ornery, godly, poised, and positive.

When I stand before “James,” a man of short stature who has trouble retrieving words and knowing which direction to walk, I pause a little longer, slightly unsure.

“James,” I speak pensively. “I don’t know if the word that comes to me is a word that a man would normally want to be thought as, but the word gentle comes to mind.”

As I remain with him, I see heads nod and I watch tears well up in James’ eyes.

I eventually close our circle with words from John Steinbeck, author of The Grapes of Wrath and a personal friend of Woody’s. “Woody is just Woody. Thousands of people do not know he has any other name. He is just a voice and a guitar. He sings the songs of a people and I suspect that he is, in a way, that people. Harsh voiced and nasal, his guitar hanging like a tire iron on a rusty rim, there is nothing sweet about Woody, and there is nothing sweet about the songs he sings. But there is something more important for those who will listen. There is the will of the people to endure and fight against oppression. I think we call this the American spirit.”

This, and our ritual closing song, “Happy Trails.”

Everyone returned to their rooms, the dining room was set back up, the people came back for lunch, the tables were bussed, I had lunch with my coworkers, and then we all went back to our individual duties, me at my laptop in my makeshift “office,” the private dining room.

About two hours after our Woody Guthrie program, I noticed a quiet presence in my space. I looked up and their stood gentle James.

“I want to thank you for what you said about me,” he said.

“Well, you are very welcome. I truly meant it.” I replied.

“What was it you said about me again?”

Of course, with pleasure, I said it all over again.

Find Me: A Reflection on Friendship and Dementia

Today is the birthday of Emilou who died in 2008. I've shared her story in keynotes, concerts, and workshops and in two albums I recorded back in 2007 and 2010. Here's a story in her honor.

Find Me

By Kareen King

It was a typical morning in the world of long-term care. Residents were resting in their beds, situated in living areas watching television, observing people enter and exit, eating breakfast in the dining room, or interacting with staff. Kitchen aides were washing dishes and clearing tables. Caregivers were busy attending to residents’ needs. Therapists were helping residents achieve mobility. Hospice workers were supplying comfort to those who were dying. Department heads, preferably called support staff, were working from their laptops or working out care strategies or staffing issues, and so forth.

I had just arrived and was headed straight to my office, hoping not to be deterred by anything or anyone, because I thought I had a lot of urgent things to take care of. However, there was no way I could ignore the sight of Emilou who was seated in her wheelchair in the dining room, directly in my path, eagerly waiting for my arrival. As usual, she called for help, just after having finished her breakfast. I responded immediately, inviting her to a gathering for individuals who have dementia, in hopes the invitation would give her something to look forward and eliminate her need to call for help.

I went on to my office to check my laptop for staff communication and to look over plans for the day. Impatient, she called for help again, so I left my office and wheeled her around with me while I did errands, thinking I could kill two birds with one stone. I asked if she had any songs on her mind. Instantly, she started singing, “I’ve been working on the railroad,” and I joined her. We sang enthusiastically, moving from one favorite to the next including, “Let Me Call You Sweetheart,” “Jesus Loves Me,” "Take Me Out to the Ballgame," and “Hallelujah, I’m a Bum” to name a few. So far so good.

Eventually, in the spirit of camaraderie, Emilou asked for a drink.

“I want something good,” she requested.

I suspected that “something good” likely referred to her favorite drink, Pepsi. Yet, since I was in a hurry, I didn’t want to be inconvenienced with the additional effort required in servicing this special need. Instead I offered her ice water.

“No thanks,” she replied.

Knowing full well she probably wanted the soft drink that just the day before she referred to as the “drink that makes me quiver,” I took advantage of the fact she hadn’t specified her drink of choice. It hadn’t yet occurred to me that her request likely was an indication of the kinship she felt between us.

“What would you like to drink then, Emilou?”

“I don’t know. Whatever you’ll give me.”

That’s all I needed to proceed with my plan. I quickly prepared a cup of ice water, brought it to her, and offered her a sip.

“That’s not good,” she reacted, spraying both me and the floor with ice water. I was dumbstruck, having never been treated like this by her before.

“Emilou, you said you wanted a drink, so I brought you some ice water.”

“I wanted something good!” she shouted.

“So what do you want then, Emilou?”

“I want your nose. That’s what I want – your nose,” she lashed out. “I’m going away from you. You aren’t any good.”

Stinging from the outburst, I calmly attempted to justify my actions. “Emilou, you said you wanted something to drink and I asked you what you wanted. You said you’d take whatever I gave you, so I gave you ice water. So what is it you want?”

“Someone to be nice. You . . . they were so nice, but then they turned on me.”

It then dawned on me that I had just become the scapegoat for previous unpleasant encounters of her being dismissed or ignored. For example, it was once relayed to me that Emilou had been removed from another nursing home, years earlier, for flinging hot coffee on a caregiver. It was obvious that Emilou wouldn’t have attributed my selfish actions to the Kareen she had come to recognize as loving and trustworthy.

One of my coworkers gave me a knowing glance, coaching that it would be best if I gave her some space. She was soon rehearsing familiar phrases such as, “Help!” “I’m so beside myself,” I’m lost,” “I hurt.” Emilou, who had been sitting erect and eager, slowly sunk into herself as her volume diminished with each passing word.

What she spoke next stupefied me.

“I want you to find me,” she spoke feebly, back slumped and head facing the floor.

I walked toward her and invited her once again, with some trepidation, to the gathering I had invited her to earlier. She accepted, but not with the enthusiasm I had witnessed at my initial invitation. I brought her into the room to join her peers. By now, however, she looked like the typical “slumper” one might conclude as the by-product of negligence. Only this time, I was to blame. As she continued to complain of pain, I removed her from the gathering so the others could carry on without disruption.

I then returned her to her neighborhood where I re-encountered the coworker who had given me the knowing glance.

“This is what we experience from her every day,” she noted.

I went on to focus on the other residents, checking if there was anyone else who needed to be at our gathering. As I headed out for one last glance, I looked in on Emilou again because she was calling for help. This time, she accepted my invitation, and she and I returned to complete the number of attendees in our gathering.

The next 45 minutes were spent sharing ways in which we are lifted up or can lift up others. For the most part, Emilou’s head hung with her eyes closed. At one point when she lifted her head, I capitalized on the moment.

“What lifts you up, Emilou?” I asked.

“Being with someone who thinks they love me.”

After the gathering, Emilou accepted my invitation to join in our next activity, Movers & Shakers, an exercise group that featured creative rhythm and movement. I situated her, a bit more uplifted, in a new circle of individuals.

“I want you to hold my hand,” she declared.

I held her hand for a moment.

“I’m thirsty,” she added.

“What would you like to drink, Emilou?” I inquired.

“It doesn’t matter.”

“Would you like a glass of ice water?”

“Yes.”

I fetched her glass of ice water, pondering her change of mind. She took a sip from a straw.

“Oh, it’s good,” she stated. “I didn’t get it on ya, did I?”

“Oh, no, Emilou. You’re fine,” I reassured her. “Do you want another sip?”

She took another sip.

“I don’t want ya to get hurt,” she persisted.

I considered the profundity of the moment. Emilou, though forgetting details like names and places, hadn’t forgotten how others make her feel, or how she felt about herself after a combative episode. Emotions go much deeper than words – a curious phenomenon in the mysterious world of dementia. I was fascinated with Emilou’s subconscious awareness of the need to make restitution amidst the murky waters of time and place confusion.

And so, Emilou and I were friends again.

Happy birthday, Emilou.