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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Dementia, Dignity, and Honoring God

Modern medicine has made optimists out of us all.
Cancer? Surgery, radiation, and chemotherapy frequently combine to leave the patient cancer-free or living well with the disease as a chronic illness.
Heart attack? Clot-busters, by-pass surgery, rehabilitation, and the patient returns to a normal life.
Dementia?  Well, that’s a different story.  Pharmaceutical options are disappointing, and there is no cure for the progressive downhill slide into confusion, loss of independence, and eventual death.

In Finding Grace in the Face of Dementia, Dr. John Dunlop asks, “How can such a tragedy as dementia be dignified, and how in the world can God be honored through it?” He’s well-qualified to seek the answer to his question. As a geriatrician (a medical doctor trained to meet the special health issues of older people), he has worked with dementia patients and their families professionally. He has also experienced the challenges of dementia from the patient’s perspective as he walked that hard path with his mother, his father, and his mother-in-law.

The Science and Theology of Dementia

Judeo-Christian values support a position of respect for the dignity of everyone, rooted in our belief that people are made in the image of God regardless of whether or not they can contribute to the nation’s gross domestic product. Since statistics show that, of those who live to the age of 90, nearly half will manifest some form of dementia, it is important for us to arrive at a right understanding of our role, as individuals and as the Body of Christ, in coming alongside patients and families.

Dr. Dunlop is careful to anchor his view of dementia firmly upon the foundation of Scripture’s narrative arc:  creation, fall, redemption, and future hope. Although dementia was not part of the “good” God declared in the very beginning, He has a purpose in all that He allows to happen. A stunning quote from Tim Keller brought this into focus for me:

“The evils of life can be justified if we recognize that the world was primarily created to be a place where people find God and grow spiritually into all they were designed to be.” (Loc 307)

With all the good that God has given to enjoy, I find myself imagining, at times, that I’ve been placed on this planet to be comfortable and to have my own way. Dr. Dunlop encourages his readers toward a trust in God that looks for purpose even in the midst of the horror of suffering that appears to be meaningless.

Understanding dementia requires an understanding of the human brain. I found this distinction among brain, soul, and mind to be especially enlightening:

“Our brains are packed with countless nerve cells, and the chemicals that go between those cells allow one nerve cell to affect another. This enables our brains to process and record our thoughts. But we also have immaterial souls, where our thoughts originate. Together our physical brains and our immaterial souls constitute our minds.”

Normal brains forget sometimes (especially as they age — cringe), but a diseased brain is comparable to an old computer with limited memory capacity. It is storing many old memories and loses the ability to store new ones. When memory loss begins to interfere with speech and cause personality change, it is diagnosed as dementia. Seventy percent of diagnosed dementia is Alzheimer’s disease, caused by plaques and tangles in the brain which begin to kill nerve cells and “lead to a deficiency of the chemicals . . . whose job it is to carry signals from one cell to another.” (Loc 730)

Insights for Families and Caregivers

Case studies of former patients are a valuable part of John Dunlop’s contribution to the caring community. Discernment comes into play from the very beginning, even in deciding WHEN to make a diagnosis of dementia. Some patients are helped by having a name for their confusion; others are sent into despair at the prospect of future loss. He recommends calling it “a memory problem” in the early days to allay fear, and stresses that physicians should communicate hope for a meaningful and enjoyable life in spite of deterioration.

Again, because he has seen the caring process from both sides, Dr. Dunlop’s insights are especially practical and helpful:

  • Try to share the burden of decisions and care for the dementia patient, even though it is usually best to have just one person be the primary caregiver and decision maker.
  • Do not delay in setting up a legally designated, durable power of attorney for medical decisions and in having a lawyer draw up documents to give supervision of the patient’s finances to someone else.
  • Notify spiritual leaders so they can be available for counsel and encouragement.
  • Maintain a regular schedule to help dementia patients get their bearings.
  • Over and over again, the author emphasizes the importance of respecting the dignity of the patient. When we serve a dementia patient, first and foremost, we are serving God who finds people so infinitely lovable that He joined us on this planet so that we could know Him. Those with dementia are whole persons, loved and valued by God.
  • Prayer is a spiritual resource which may help the one who prays more than the patient by graciously changing our attitude.
  • Remnants of pre-dementia personality may persist, but lack of inhibition may allow some previously suppressed aspects of the personality to present themselves with startling results.
  • Committed Christians may experience a sense of the absence of God as the ability to feel anything at all recedes.
  • Even the most habitually grateful individuals may become apathetic toward their caregivers, never acknowledging the sacrifice the loved one is making. Caregivers for dementia patients face daily challenges and deal with their loved ones’ meltdowns, agitated behavior, sleep disturbance, endless messes, and this is exacerbated by their resulting loss of contact with the outside world.  This amazing statistic is both startling and motivating to the Body of Christ to be offering assistance:  “Thirty percent of caregivers die before the patient for whom they are responsible.” (Loc 1027
  •  One way to connect with those who have dementia is to repeatedly tell them the stories of their life, emphasizing God’s part in bringing them to Himself and reminding them of our love for them. One of the greatest ways of communicating love to someone with memory loss is the gift of presence.
  • The church plays an important role in providing for the spiritual needs of dementia patients and their caregivers, but also in teaching what it means to be fully human, educating believers in an adequate theology of suffering, establishing believers in spiritual disciplines that will sustain them through hard times, and developing a culture that values serving and caring for “the least of these.”
  • Dr. Dunlop addresses end-of-life issues with answers to questions about appropriate medical care, the process of dying, and whether or not it is appropriate to limit life-prolonging care. His answers come from a biblical perspective coupled with a respect for both the sovereignty of God and the value of life. His position on end-of-life care for those suffering from dementia could be summarized in this way:  “Comfort is more important than length of life.” (Loc 2377)

Inside Dementia

After a certain point, it is impossible for a patient suffering from dementia to report his feelings from within the disease, but Dr. Dunlop shares empathetic insights he has gained from his work.  Dementia is constricting. Suddenly words do not work as effective tools for communication. It is not clear where the bathroom in one’s own house can be found. Life becomes small and boring as abilities and hobbies become unmanageable. People act embarrassed by the new you, so it’s easier just to withdraw. Everything is unfamiliar and, therefore, threatening. Frustration becomes a way of life.

J.I. Packer shares words that are applicable to both the dementia patient and the caregiver:

“The weaker we feel, the harder we lean. And the harder we lean, the stronger we grow spiritually, even while our bodies waste away.”
(Loc 1173)

I recently attended the funeral of a friend I’ve known for most of my life, but the beautiful memorial service was not the good bye. My friend had been slipping away from us into the fog of dementia for years, leaving us all feeling as if we had not had the opportunity to say a proper good bye. Even so, as we gathered, we remembered her as she had been, and we honored her as we thanked God together for the gift of her life, for the fortitude of her caregiver, and for the truth that our value to God is not tied up in how well we perform or how much we contribute.

By embracing biblical values, respecting the dignity of those with dementia, gathering around the caregiver as brothers and sisters, and placing our ultimate hope in Christ, we grow, God is glorified, and we are reminded in one more way that our eternal home is not to be found here on this planet where “the sufferings of this present time are not worthy to be compared with the glory that is to be revealed in us,” (Romans 8:18).


This book was provided by Crossway in exchange for my review.  I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255 : “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

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