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2010-06-01 issue:

Remembering the forgotten

What we can learn from Alzheimer’s patients

by Cheryl Paulovich

Print Article

"Help me, God. I want to die. Why don't you take me?" Annie aimlessly wanders through the Alzheimer’s unit repeating this anguished cry over and over.

I approach and greet her, pulling up a chair to be at her level and look into her eyes. I gently stroke her arm, telling her God loves her. She quickly responds that God doesn’t answer her.

I recite the 23rd Psalm, and she joins in. "Even though I walk through the valley of the shadow of death, I will fear no evil."

She defiantly says, “I’ve tried that and it doesn't work. Oh, I want to die. I can’t remember anything. I don’t even know who I am."

Lightly caressing her shoulders—she says it feels good—I begin singing the Lord's Prayer. "Thy will be done on earth as it is in heaven."

Again she cries out, "God I want to die. Why don't you take me?" Then she prays, “Our Father, who art in heaven, hallowed be thy name” as she wanders off in her wheelchair to another corner of the room.

The nursing assistant looks at me and shrugs her shoulders, while other residents ignore her, absorbed in their own inner worlds. Louise bends over to pick up her imaginary little people off the floor and talk to them. Ruth carries on a monologue about her mother, while Lisa sings an extemporaneous song about what she is doing.

For a moment I stand in silence, acknowledging the yearnings of each person. I hold Annie in remembrance, praying a Psalm of lament: "O Lord, God of my salvation, when, at night, I cry out in your presence, let my prayer come before you; incline your ear to my cry. For my soul is full of troubles, and my life draws near to Sheol. I am counted among those who go down to the Pit; I am like those who have no help, like those forsaken among the dead, like the slain that lie in the grave, like those whom you remember no more, for they are cut off from you. You have put me in the depths of the pit, in the regions dark and deep. Your wrath lies heavy upon me, and you overwhelm me with all your waves. ... I am shut in so that I cannot escape" (Psalm 88:1-8). May your grace and peace be hers, Lord Jesus.

I have come as chaplain to the Alzheimer's unit for Bible study. I gather residents around the table, and together we sing the old hymns they love. Even though they may no longer recognize family members, the words of songs and Scripture never leave their hearts and minds. We talk about the love of Jesus and how he held the children in his arms and blessed them. I pray a blessing on each person with a hug and a kiss. "I love you."

Dementia of the Alzheimer's type is a progressive degeneration and loss of nerve cells in the brain's cortex that are associated with memory, learning and judgment. In 2008, the number of Americans affected by Alzheimer’s disease was estimated at 5.2 million. It is projected that by 2050 the number will reach more than 16 million (Thibault and Morgan). As lifespan increases, the number of age-related illnesses also increases. Experts say nearly 50 percent of the population will develop dementia by age 85. It is becoming more difficult for families to manage care at home, and they look to long-term care facilities to provide for loved ones.

As Alzheimer’s disease progresses, it increasingly incapacitates the patient until often, at death, the patient is unresponsive. How is pastoral care effectively administered to these people? What are the faith implications for someone who can no longer cognitively understand, pray or receive Communion? How is God known to them? What can Alzheimer’s patients teach me about God’s love?

Ministry of presence
The Confession of Faith in a Mennonite Perspective affirms that the Holy Spirit in an Anabaptist-Mennonite perspective is the Spirit of God through which the world was created, who dwelled in Jesus Christ and is God’s presence and power in the world. By the Holy Spirit, the love of God is poured into our hearts (Romans 5:5), and we experience new birth in Christ and participate in the body of Christ. Romans 8:26 declares that "the Spirit helps us in our weakness; for we do not know how to pray as we ought, but that very Spirit intercedes with sighs too deep for words." Furthermore, nothing will separate us from the love of Christ—not hardship, distress, persecution, famine, nakedness, peril or sword (Romans 8:35)—or, one might say, Alzheimer's disease. Paul re-emphasizes this a few verses later: "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" (Romans 8:38-39).

It would seem to follow that a ministry of presence, as a minister of Jesus Christ, is the most profound way to be the love of God to another that extends beyond thought and words.

Remembering the forgotten
While Alzheimer’s patients are still aware enough of the losses they experience, as in the example of Annie, they increasingly become disoriented and disconnected from reality. Often the personality begins to change, and the person expresses verbal and/or physical violence toward loved ones. Family members find it extremely difficult when their loved one no longer recognizes them for who they are. A son told me he visits his mother only once every three months because she doesn’t even know him, and it’s better for both of them to not "be in each other's face."

When a person is no longer able to remember who they are, it is up to others to hold them in memory, keeping alive the songs, Scriptures and prayers that were once an anchor for them. Their total dependency on others is perhaps the best metaphor of what our own lives in Christ ought to be—totally dependent on God.

At the center of our faith is Christ's suffering. Huebner writes, "The church is often tempted to separate salvation from suffering, to see salvation as synonymous with overcoming suffering, with liberation. Memory loss teaches us otherwise. ... Our ability to imagine salvation for such a person requires understanding that our well-being rests in the hands of another who can change what we cannot" (Vision). Ultimately it is about how God remembers us.

Remembering as God remembers
"Can a woman forget her nursing child or show no compassion for the child of her womb? Even these may forget, yet I will not forget you. See, I have inscribed you on the palms of my hands" (Isaiah 49:15-16). This image of God's love as stronger than even a mother's is a reminder that God’s remembering isn’t about cognitive recall but about God's character. God creates, redeems and came to us as Jesus to live, suffer and die, rise and forgive.

Huebner says that remembering as God remembers is to remind us of our identity in Christ. "We are loved, we are accepted, we are gifted with grace, we are being healed, we are not forgotten. ... Death is not the ultimate enemy; being forgotten is" (Vision).

The greatest gift we can give to one another is to be present, in death or in life, regardless of physical, mental or emotional condition. For it is only in Christ that we are found.

Congregational response
Health care for the aging is a missional call to Mennonite Church USA in the 21st century. Ministering God’s love to those with dementia is a challenge we cannot ignore. Jane Marie Thibault boldly encourages congregations to assess who the care receivers and caregivers are, visit regularly, educate the congregation, offer respite, transportation, opportunities to worship, pastoral counseling and be advocates. In so doing, we will be remembering the forgotten among us. Jesus said, "Truly I tell you, just as you did it to one of the least of these who are members of my family, you did it to me" (Matthew 25:40). Above all, we must not forget to remember God’s initiative of love toward us.

Cheryl Paulovich is chaplain at Glencroft Retirement Community in Glendale, Ariz., and a member of Trinity Mennonite Church.

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