Even Dementia is Not Dark to God
On January 24 of this year, my mother suffered a significant stroke leaving her with little language and even less capacity to participate in tasks she had previously enjoyed. The story below highlights how God’s Word spoke to me as I struggled to interact with her and assist her as we both adapted to her changed life. It was published by The Gospel Coalition’s online U.S. edition in May of 2021.
MAY 9, 2021 | CYNTHIA S. FISCHER
©Photo by Dominik Lange on Unsplash
When my mother, who already suffered from moderate dementia, experienced a stroke earlier this year, her vocabulary of nouns vanished. One miscreant piece of plaque set sail in her brain, and that was all it took to erase the names of people, places, and things she had known.
In one moment, all the stories she had ever told were never to be told by her again.
Darkness of Dementia
Virtually every time I had driven her home after dinner with us, Mother had repeated the story of her father driving his “blitz buggy” on the same road (an unpaved country lane back then). The roofless Blitz buggy had less than precise steering left and right on this hilly, winding road.
“In one moment, all the stories she had ever told were never to be told by her again.”
Sometimes it ran out of gas. Sometimes it had engine problems. But her father had always managed to overcome all manner of trouble his makeshift vehicle created. I had often rolled my eyes as she had launched into the same rendition of the same story. Now, I tear up and take a detour.
Mother can’t recall my name without prompting. She’s confused about where her bedroom is located in her home of 31 years. The stroke kicked her dementia into fourth gear. When she said, “Something is wrong. This isn’t right,” I told her she had experienced a stroke. She raised her head in alarm, her eyes wide open.
I learned quickly that answering this persistent question truthfully yielded the same alarm. So I change the subject.
Psalm 139: My Prayer
In so many ways, I’m unable to communicate with her. Remembering my favorite psalm, Psalm 139, I cry out to God. I ask him to speak into her heart, which can’t process much of anything other than meal time, a brief card game of War, or a short visit with her sister before she falls asleep again.
I ask God to touch her deep within her soul, to give her his assurance and peace. When she’s awake, I sing with her all manner of songs—from silly songs about crocodiles to beautiful hymns about God’s faithfulness.
Sometimes in the middle of the night I hear her singing “Take Me Out to the Ball Game” or humming “A Mighty Fortress Is Our God.” Mom has returned, ever so briefly, and it’s a very sweet gift to me.
Watching Her Life’s Bookends
One afternoon, I read Eric Carle’s The Very Hungry Caterpillar to her. She loved that the caterpillar ate his way through all the fruit of the week. After the caterpillar formed a cocoon, I turned the page, and she was astounded that he had become a butterfly. It was my turn to have my eyes opened wide.
I was watching my 90-year-old mother transformed into a small child full of marvel and wonder at God’s creation (Matt. 18:3). She was hearing these stories as if she were a toddler, seemingly for the very first time. It was as if I was present at the bookends of her life. I shivered. Only God can see the beginning and the end of an old person’s life, so this glimpse left me in awe and sorrow.
I started to read The Jesus Storybook Bible, beginning with creation. “Have you heard this before?” I asked. She didn’t know. I flipped to the stories about Jesus, asking her if she knew him. Again, she didn’t know. “Maybe” was her response.
My mother can’t call on Jesus to help her. She’s no longer clear who he is. She cannot seek God for peace. She cannot pray to him. She cannot cry out to him—at least not in any verbal way. Who among us has contemplated the end of our days and considered we might not be able to pray aloud?
Only One Thing Has Changed
When I read Psalm 139, I’m reminded that God is the only actor in this passage. We’re merely the awestruck and grateful recipients of his omniscience and omnipresence.
“Who among us has contemplated the end of our days and considered we might not be able to pray aloud?”
He knows absolutely everything about my mother. He knows all about her lying down, which is most of her time (Ps. 139:2–3). He knows about her anxious thoughts and understands her words that we no longer understand (Ps. 139:4). He is behind and before her (Ps. 139:5).
Mother resides in the depths of dementia’s sea, as it were. And yet, as the psalmist proclaims: “even there your hand shall lead me, and your right hand shall hold me” (Ps. 139:10). Darkness overwhelms her memory. And yet “even the darkness is not dark to you; the night is bright as the day, for darkness is as light with you” (Ps. 139:12). Dementia is not too dark for God.
“Mother resides in the depths of dementia’s sea, as it were. And yet, as the psalmist proclaims: ‘even there your hand shall lead me, and your right hand shall hold me.’’
When I settle my heart, I know the only thing changed is my mother’s memory. God has not changed. Our omnipresent God can go where I cannot. He can minister to her soul despite her lacking knowledge of him.
I resonate with the psalmist who admits, “Such knowledge is too wonderful for me” (Ps. 139:6).
Lead Her in the Way Everlasting
I find deep hope and comfort that although I can’t provide for my mother’s deep need for peace, God can. Dementia is not too dark for the God who is fully present with her on this dim and murky path.
The psalmist concludes by asking God to lead him in the way everlasting (Ps. 139:24). So too I ask God to gently, in his time, lead her to her everlasting home and into his glorious light.
Cynthia Fischer and her husband attend Restoration Community Church in St. Louis, where she pilots her curriculum The Children’s Sanctuary. A graduate of Covenant Seminary, Cynthia is passionate about nurturing the children in our churches to love and worship God. Cynthia and her husband have two grown children and are first-time grandparents to twins. She blogs at faithpassing.org.