‘I Will Not Forget You’

Hope in the Grief of Dementia

Every Tuesday, Violet smiles when I visit and hold her hand, but she doesn’t remember that I’m the friend who has helped to care for her for the past five years. The framed needlepoint pictures with which she lovingly decorated her home were forgotten long ago, and she now sits at the craft table in a daze, as if she’s never held scissors before.

On a good day, she tries to recite the Lord’s Prayer along with me, but increasingly she shows no recognition of the words that once buoyed her through the storms of life. The fog of dementia crowded out her recollection of such ordinary means of grace long ago, and now her world has narrowed to the bright walls of her memory-care community.

Walking alongside Violet feels like watching death in slow motion. As the quirks and values and personality traits I’ve come to love about her fade away one by one, it’s as if I’m watching Violet herself dwindle and vanish.

Unique Grief

The sorrow I’ve experienced in my journey with Violet is only a shadow of the anguish that caregivers shoulder when a beloved family member has dementia. Families of dementia sufferers struggle with high rates of anticipatory grief — mourning in expectation of loss — while a loved one is still alive. A devastating diagnosis brings tides of disbelief and heartache even before death takes hold. We grieve as we envision life without someone dear to us; we grieve as illness erodes our loved one’s vitality and, in the case of dementia, his memories and personality.

It is a strange and disorienting experience to mourn for someone who is still alive. In the most merciful cases, a dismaying diagnosis prompts us to prioritize heartfelt conversations and last lingering embraces while we can. Dementia, however, often robs loved ones even of this meager solace. Sufferers often lack the language, insight, and memory to have the meaningful conversations for which we pine. We may say the words pressing on our hearts, only for our loved one to forget an hour later, or even worse, to lash out with agitation and uncharacteristic cruelty. Closure in dementia grief is an elusive and seldom-achieved prize.

Our sorrow deepens as the insidious and progressive nature of dementia alters our loved ones before our eyes. Troubles with finding words and the loss of short-term memory pave the way for withdrawal from activities and friends. The abilities to cook and drive disappear. Eventually, even getting dressed independently becomes a feature of the past. As the familiar fades away, new, unsettling behaviors emerge, with agitation, anxiety, and hallucinations punctuating our loved one’s days. In the wake of such changes, families experience the loss of the person they knew, and given the long and slow course of dementia, this period of grieving persists for years. Rather than offer closure, anticipatory grief in dementia hobbles on and on, accumulates new wounds, and often worsens over time.

As we ride the swells of confusion and sorrow, our concerns turn toward the spiritual. What can we say about a loved one’s soul when he loses all memory of attending church, of reciting prayers, and even of Christ himself? Does God’s grace fade away with memories, shriveling as our neurons thin? Are our loved ones still saved when they can no longer affirm with their words that Christ is risen?

Kept as Memories Fade

Violet no longer seems to remember her beloved dogs, or how she would manicure the woods in her backyard, clearing sticks from the carpet of pine needles with a precision hinting of fairy work. And yet, she smiles, returns hugs, and feels emotions sufficiently deep to laugh and cry. Although her memories have faded away, God’s fingerprint remains indelibly upon her.

And so it does upon all of God’s people, whether we stride through life clear-eyed or wander in a mist, because our salvation springs not from our memory, but from God’s grace toward us in Christ. As Benjamin Mast, professor of psychology at the University of Louisville, so poignantly states in his insightful book Second Forgetting,

Conditions like Alzheimer’s disease have such a hold on a person that it can seem like a form of bondage — that the person is a slave to the disease. Yet while there are great changes in their memory, personality, and behavior, there is still an underlying reality and an enduring aspect of their identity that cannot be taken away. . . . These individuals remain children of God, created in his image, and their identity and their life is still rooted securely in Christ. (66)

Such an assurance can be comforting when we no longer hear the name of Christ upon a loved one’s lips. When praises fall silent and long-recited prayers fade from memory, we may worry that our loved one’s prior declarations of faith were false professions (Matthew 7:21–23; Romans 11:29). How can we still count loved ones among the saved, we wonder, when they no longer call upon the name of the Lord (Acts 2:21)?

“Our loved ones’ salvation depends not on their memory, but on his. And his memory is perfect.”

We can remind ourselves that a dementia sufferer’s forgetfulness reflects the effects of disease rather than a willful rejection of salvation through Christ. For those with dementia, the brokenness of creation affects the mind with particular devastation. Yet while such a sufferer’s spoken trust in the Lord may falter, God has promised to uphold us into our old age, even as our memories fade (Isaiah 46:4).

Undiminished Hope

God chose his elect before the foundation of the world to be his own children (John 1:12; Ephesians 1:4), “a people for his own possession” (1 Peter 2:9). Whether or not the ravages of dementia change a loved one’s memory or behavior, in Christ he remains a new creation (Romans 6:6; 2 Corinthians 5:17). Consider the assurance and the solace Peter offers:

Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. (1 Peter 1:3–5)

God has caused us to be born again. Faith is a gift from God himself, “not a result of works” (Ephesians 2:8–9), and once lavished upon us, our inheritance of eternal life remains imperishable, undefiled, and unfading. That same inheritance awaits our loved ones with dementia, even when they can no longer remember Christ’s name. Even when they cannot speak, the Spirit continues to search and know their hearts and prays on their behalf (Romans 8:26–27). Our loved ones’ salvation depends not on their memory, but on his. And his memory is perfect.

Unfading Memory

God never forgets his beloved. Unlike our own sin-weary minds, prone to deterioration and breakage, nothing escapes his notice (Psalm 33:13–15). He knows our thoughts even before we voice them: “O Lord, you have searched me and known me! You know when I sit down and when I rise up; you discern my thoughts from afar” (Psalm 139:1–2).

Even more astonishing, God’s perfect memory is caught up in his faithfulness. Over and over throughout the Old Testament, God remembers his people and acts in mercy even as they wickedly dismiss him. When the floodwaters covered the earth, “God remembered Noah and all the beasts and all the livestock that were with him in the ark” (Genesis 8:1), and he buoyed them to safety. God remembered Abraham and rescued Lot from the destruction of Sodom (Genesis 19:29). When the Israelites languished under Pharaoh’s tyranny, “God heard their groaning, and God remembered his covenant with Abraham, with Isaac, and with Jacob” (Exodus 2:24), and he forged a path toward their freedom.

In each case, God’s remembrance of his people was bound to his goodness, his acts of grace, and his eternal character as one “merciful and gracious, slow to anger, and abounding in steadfast love and faithfulness” (Exodus 34:6). “Can a woman forget her nursing child, that she should have no compassion on the son of her womb?” God declares through the prophet Isaiah. “Even these may forget, yet I will not forget you. Behold, I have engraved you on the palms of my hands” (Isaiah 49:15–16).

He Holds Fast

Although Violet seems a shadow of herself, I draw comfort from the truth that God sees her and knows her. He has engraved her name on his palms and has promised never to leave her or forsake her (Hebrews 13:5). While she has forgotten how to pray, the one worthy of all praise will never forget her.

As you walk with those struggling with dementia, take heart. Dementia reflects the fall, and under its oppression memories wither, fade, and blow away like dry leaves on a gust of wind. But God’s memory is perfect. His grip upon his beloved remains firm whether they recall his name or not. And in Christ, nothing can wrench his people from his love (Romans 8:38–39).

is a trauma and critical care surgeon turned writer and homeschooling mom. She is author of Lost in the Caverns (The Dream Keeper Saga). She and her family live north of Boston.