Remember me: Faith in the face of dementia

A Bible in the Chapel of the Word at Anabaptist Mennonite Biblical Seminary.

By Janeen Bertsche Johnson

Note: This article was originally published in the July 2018 issue of The Mennonite.

Scattered through Scripture are calls to remember.

Texts such as Deuteronomy 32 and Psalm 105 admonish the people to “remember the days of old” and recite the salvation story — all the actions of God on their behalf. “Remember that you were a slave in Egypt and the LORD your God redeemed you from there” is the reason repeatedly given for why the people should follow God’s commandments, especially in their care for the marginalized (Deuteronomy 15:15; 24:18, 22). There are calls to remember the wilderness wanderings (Deuteronomy 8:2), the covenant with God (1 Chronicles 16:15), our past alienation from God (Ephesians 2:11-12) and the words of the prophets and Jesus (2 Peter 3:2). Jesus commanded us to observe the Lord’s supper “in remembrance” of him (Luke 22:19). Remembering God and God’s activity appears to lie at the foundation of our faith.

In college, I did a year-long independent study of the role of reminiscence in articulating, passing on and evaluating faith. As a recounting of memories — both experiences and the meaning we make of them — reminiscence is normal and important work in the aging process. But sometimes this work gets interrupted by dementia. Dementia refers to a variety of diseases and conditions, including Alzheimer’s disease, in which nerve cells (neurons) in the brain die or stop functioning normally. This affects memory, the ability to think clearly, behavior and eventually the ability to carry out basic bodily functions such as walking and swallowing. About 6 million people in the United States are estimated to be living with Alzheimer’s disease or another dementia. Women over the age of 65 have a 1 in 6 chance of developing Alzheimer’s, and men the same age have a 1 in 11 chance. After age 85, the percentages rise to almost 50 percent. As life expectancy lengthens and Baby Boomers age, the numbers of people affected by dementia is growing rapidly and is expected to reach 15 million by 2050 (www.insidedementia.com).

As my family has journeyed through the early stages of my mother’s dementia, at times I have felt we were racing to preserve memories — making videotapes of her life story, documenting photos and family heirlooms, gathering the youngest generation to hear her stories. Even as we are grateful for the things she still remembers, we mourn with her the frustration of sentences interrupted by lost thoughts, the loss of ability to plan, disorientation in matters of time, and moments of confusion or distorted memories. Dementia’s changes lead to other losses, such as the independence of driving or living in one’s own house, beloved activities such as volunteer work, and often the gradual shrinking of one’s circle of friends.

This journey has also prompted me to re-evaluate the way we define personhood and faith. Our culture emphasizes rational thought as the essence of our personhood (“I think, therefore I am”). Often we view faith as belief or the ability to articulate belief. And as noted earlier, many Scripture passages stress the importance of remembering. If we lose the ability to articulate thoughts, as gradually happens with dementia, or if we are no longer able to remember, do we also lose our very personhood? Our faith?

No, the essence of our personhood and our faith is not our ability to remember. We are beloved children of God not because we remember God but because God remembers us.

The theme of God remembering occurs throughout the Old Testament, as well as in the songs of Zechariah and Mary (Luke 1:54f., 72f.). God remembers covenants; one example is Psalm 106:45: “For their sake God remembered his covenant and showed compassion according to the abundance of his steadfast love.” God remembers that humans are created and are finite (Psalm 78:39; 103:14). God remembers steadfast love and mercy (Psalm 98:3), deep as a mother’s affection for her child (Isaiah 49:14-16; Jeremiah 31:20).

So deep is this awareness of the remembering character of God that more than 30 passages in the Old Testament include a call for God to remember. Many of these pleas come from a situation of distress. For example, Hannah in her distress prayed that God would remember her and give her a child (1 Samuel 1). Another example is Psalm 25, which David prayed when he was threatened by his enemies. This passionate and beautiful prayer can be a powerful resource for those with dementia:

1 To you, O LORD, I lift up my soul.
2 O my God, in you I trust; do not let me be put to shame; do not let my [dementia] exult over me.

4 Make me to know your ways, O LORD; teach me your paths. Lead me in your truth, and teach me, for you are the God of my salvation; for you I wait all day long.

6 Be mindful of your mercy, O LORD, and of your steadfast love, for they have been from of old.

7 Do not remember the sins of my youth or my transgressions; according to your steadfast love remember me, for your goodness’ sake, O LORD!

16 Turn to me and be gracious to me, for I am lonely and afflicted.

17 Relieve the troubles of my heart, and bring me out of my distress.

18 Consider my affliction and my trouble, and forgive all my sins.

20 O guard my life, and deliver me; do not let me be put to shame, for I take refuge in you.

21 May integrity and uprightness preserve me, for I wait for you.

For those suffering from dementia, perhaps “remember me” is the most essential prayer they can utter.

How can the church respond to this plea? We can provide physical demonstration of remembering, such as continuing to visit and include people with dementia, providing respite for their caregivers, singing the heart songs that evoke their foundational memories and including prayer reminders to “remember those who are unable to worship with us” along with a listing of their names.

Mennonite theologian Harry Huebner writes: “We can offer each other no greater promise than to remain present to one another, redemptively reflecting the face of God’s healing love. To help another die — or live — in Christ is to help that person remain who she is in Christ, in spite of her loss of mobility, thinking capacity and even identity, for in Christ our identity can only be found, not lost” (“On being stuck with our parents,” Vision, Spring 2004).

The church can also offer the reassurance of God’s continued remembering and presence through the words of Scripture, song and prayer: “Listen to me… [you] who have been borne by me from your birth, carried from the womb; even to your old age I am [your Savior], even when you turn gray I will carry you. I have made, and I will bear; I will carry and will save” (Isaiah 46:3-4).


More information

For an introduction to the 7 As of Dementia, visit the Alzheimer Society York Region website: www.alzheimer.ca/en/york/About-dementia/What-is-dementia/Seven-A-s-of-dementia