“Who are you? What am I doing? Where am I going?” Melody asked.
“I’m Chaplain Cheryl. You’re here with your husband for our worship service.”
“Yes, and I’m so glad you’ve come today, Melody. God loves you so much!”
Melody’s rapid descent into the moderate stage of Alzheimer’s disease of the dementia type is troubling not only for her but also her husband. Even though Melody’s memory is fading, she loves to sing. As we begin singing the old familiar hymns of her youth, she sings along on every stanza. Her tense body relaxes into the safe space of God’s love she has known so well.
When Millicent first came to us, she was actively involved in Bible study and worship services. As her dementia increased so did her anxiety about being alone. Clinging to me she would plead, “I want to go with you. Don’t leave me. I love you. Don’t leave me!” Familiar scriptures and hymns remained faith-grounding for her.
Alzheimer’s Disease is:
•Only one type of dementia
•A progressive, degenerative, incurable neurological disease of the brain.
Recent statistics released by the Alzheimer’s Association reveal that:
•5.4 million Americans live with Alzheimer’s disease, the sixth leading cause of death in the United States.
•Every 68 seconds someone develops AD.
•Baby boomers are entering the age of greatest risk; by 2050 there will be 11 to 16 million people with AD in the US.
•About half a million under 65 have AD or a related disorder. Dementia at first brings forgetfulness and knowing the brain isn’t functioning like it used to. In the middle stage of confusion and disorientation, the person may begin to wander and need assistance with activities of daily living. The end stage eventually finds the person without recognition of self or loved ones and dependent on others’ care for survival. A person with dementia is continually dis-membered through the losses each stage of the disease brings.
As a pastoral caregiver I acknowledge that spiritual well-being is nurtured through relationship with our environment, ourselves, other people and God. The calling of the faith community is to re-member and mediate God’s love to those with dementia.
- We can offer opportunities for faith journey affirmation in familiar ritual, communion, scripture, hymn-singing, and praying the Lord’s Prayer. These are deeply imbedded in the spiritual psyche and remembered when all else is forgotten. When I lead out in the Lord’s Prayer, how gratifying it is to hear others joining in whether it is the English “Our Father…”, Spanish, “Padre nuestro”, or French, “Notre Père….”
We can communicate verbally and non-verbally with empathy, compassionate presence, and validation in a quiet, gentle voice and soft touch.
- We can learn to know the person’s life story, what has brought them consolation or desolation, connection or disconnection.
It was a Sunday afternoon in Advent and we had gathered 40 residents for our weekly Vespers service. We sang Christmas hymns and prayed, and then I invited them to read or follow along with me some verses in Luke 2 found in their large print songbook.
No sooner did we finish reading than Laurie raised her hand and asked, “Ma’am, why did Jesus have to die?” My initial reaction was to tell Laurie we could talk about that later. However, a thought flashed through my mind that “later” she may not even remember the question but would remember the feeling of being invalidated and pushed aside.
I gave a brief, low-key answer that satisfied Laurie. Suddenly, with tearful emotion Roger, from across the room burst into thanksgiving for Jesus’ love in shedding his blood on the cross. Hattie began to mumble aloud.
Uneasy about the graphic direction in which this was going, I acknowledged Roger’s sentiments and returned to Luke 2. However, Hattie’s intermittent verbal muttering became louder and more disruptive until she erupted into wailing.
When I finally announced we’d end the service with prayer, Hattie screeched, “Pray for the people outside the door! They’re trying to get in and its raining!” And yes, we included those people in our closing prayer.
After everyone had returned to their rooms, I found Hattie tearfully telling the nurse there was bombing and people were hurt. The emotional description of Jesus’ violent death she had heard in Vespers seemed to have triggered a long-ago fearful memory of being a single missionary in the Philippines amidst the bombing raids in World War II, and taking cover in an overcrowded bomb shelter. Listening attentively to her stories of life experiences gave us insights on how to bring comfort in the present.
One day a campus couple was singing and playing piano during lunch. When Donald abruptly left the room in tears, I followed him. The songs brought back warm, loving memories of his childhood family. He was grateful for the memories but sad that he is now alone with no family present.
Melody, Millicent, Laurie, Roger, Hattie, and Donald were created by God in God’s image – and God is Love! Even though they may not know, God knows who they are, where they are, and where they’re going. Even when our minds descend into the dark abyss of dementia, God’s love is embedded in our cellular memory. God’s love in Jesus never leaves us.
For I am convinced that neither death, nor life, nor angels, nor rulers, nor things present, nor things to come, nor powers, nor height, nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord (Rom. 8:38-39).
Cheryl Paulovich is an ordained Mennonite chaplain at Providence Place at Glencroft in Glendale, AZ. She is a member of Trinity Mennonite Church and Mennonite Chaplains Association.