When Words Fail: Living and Lamenting through Dementia

It’s a common experience:  the brain goes in search of a word that just will not materialize. Finally, eventually, the elusive word does come, even if it takes a thesaurus to prime the pump, and we rejoice because in conversation and in writing, finding and savoring the just-right-word to frame a thought is supremely satisfying.

Therefore, it was a searing loss for Douglas and Becky Groothuis when Becky began experiencing the symptoms of a uniquely devastating form of dementia (primary progressive aphasia) which robs the patient first of words, then of all executive function, and eventually of life. As writers, speakers, and teachers, Douglas and Becky’s life together and their livelihoods, their humor and their recreation, had revolved around words. Walking Through Twilight: A Wife’s Illness-A Philosopher’s Lament traces the tragedy of their loss from the caregiver’s perspective as, slowly, Groothuis’s beloved wife and companion begins slipping away.

The Language of Lament

Borrowing words from Moses and a soundtrack from Pink Floyd, Groothuis sings a lament in the key of faith, describing a slow suffering in a book that no one would want to write. He expressed lament with Buechner-esque accuracy:

Lament is the place “where our deep sadness meets the world’s deep wounds.”  (55, 56)

Christian lament should not be silenced or hurried along, for it is a sorrow mingled with hope, and those who mourn are “aching visionaries” (57) who lead us in expressing our own broken hearts in a context of healing and purpose found only in the knowledge of God. The worry and the despair of Becky’s gradual slippage wore on Douglas’s spirit, and he related with candor his season of misotheism–“hatred of God” (41)–in which it seemed that God (whose existence Groothuis never questioned) just was not listening and would not relieve their suffering.

Becky’s aphasia and loss of executive function rendered normal routines of life–tying shoes, brushing teeth, using a phone–inscrutable. With both caregiver and patient, efficiency is just a memory, but rendering lemonade from this sour mess, Groothuis observed, “Uni-tasking is often more important than multitasking.”  Leaning into the beauty and the gift of becoming the caring person in his wife’s days, his focus became the embodiment of “unmediated presence,” which comes as close to expressing the image of God as we can hope for on this planet.

Walking Through Twilight Together

As both a philosopher and a lover of God, the author plumbs the depths of his suffering and emerges with wisdom for the body of Christ both to lend purpose to our personal experiences of suffering and to sharpen our skill in coming alongside others as we enter fully and most helpfully into the brokenness of others.

Because it is a unique and long-term loss, our hearts so often do not know how to help a family that is struggling with some form of dementia. Cards and letters are a thoughtful way to express concern because they can be read in quiet moments.

Both tenderness and respect are crucial to communication and help to eliminate the tendency to talk down to dementia patients, to raise one’s voice, and to condescend. Becky Groothuis appreciated visitors and medical personnel who included her in conversations, who spoke directly to her and not merely about her.

Beware of Mere Optimism

As a caregiver, Douglas eventually begin to dread the question, “How is Becky?” A truthful answer would have been too hard for most casual inquirers to handle:  “She’s not doing well, and she will never get better.” Instead of inflicting the burden of vague questions, he suggests that we avoid trying to cheer caregivers up or to move them forward in their grief. Better instead:  grant them time and space to grieve. He urges believers to “pray for wisdom before speaking or communicating with someone under the pressure of loss.”

When offering help, be sure to follow through with action. Providing meals, transportation, or assistance with mundane tasks speaks love. Pronouncements shaped around Romans 8:28 and “I know how you feel” are presumptuous and not helpful, particularly in the earliest days of grief.

“Like one who takes away a garment on a cold day,
or like vinegar poured on a wound,
is one who sings songs to a heavy heart.”  (Proverbs 25:20)

When words fail, when things fall apart, and the twilight signals that darkness is on its way in your own small world, God is present there in the twilight.

Even when words fail, the Word Himself is present and He will never fail.

And this update will enable you to pray with knowledge for the author as he journeys through grief:

At 6:45 a.m. on July 6, 2018, Becky Groothuis peacefully entered the presence of her Lord. Douglas shared these thoughts on Facebook shortly after her passing:

“Her long, long struggle is over. I don’t have to worry about her any more. . . Becky’s body is upstairs and will soon leave this house and all earthly houses forever. She has already risen from her body into God’s realm of angels and saints.

I don’t believe this for sentimental reasons. I worked hard for my worldview. We are more than our bodies. We have souls. The soul leaves the body at death to go into God’s presence. Christ’s resurrection is the down payment for our resurrection after the intermediate state. These beliefs hold me as God holds me, and Becky.

Many thanks to InterVarsity Press for providing a copy of this book to facilitate my review, which, of course, is offered freely and with honesty.

I  am a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com. If you should decide to purchase Walking Through Twilight: A Wife’s Illness-A Philosopher’s Lament, simply click on the title (or the image) within the text, and you’ll be taken directly to Amazon. If you decide to buy, I’ll make a small commission at no extra cost to you.

Thank you, as always, for reading and for your continual encouragement,

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