Walking Through Twilight: A Wife's Illness--A Philosopher's Lament

When Words Fail: Living and Lamenting through Dementia

Posted on by Michele Morin

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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Published by Michele Morin

Michele Morin is a Bible teacher, writer, reader, and gardener committed to the truth that women can become confident Christ-followers and students of God's Word. She has been married to an unreasonably patient husband for thirty-plus years, and together they have four sons, four daughters-in-love, and six adorable grandchildren. Michele loves hot tea and well-crafted sentences, poems that stop her in her tracks, and days at the ocean with the whole family. She laments biblical illiteracy and advocates for the prudent use of “little minutes.” She blogs at Living Our Days, and you can connect with her on Facebook, Instagram, Twitter.

38 thoughts on “When Words Fail: Living and Lamenting through Dementia”

  1. What a heartbreaking, but ultimately inspiring story! Thank you for passing along the tips for helping friends and relatives affected by dementia (and other life-altering diseases). My mom developed dementia after she had a stroke at age 87, and the “Twilight” from the title of the book is a good descriptor. It changed a once vital, determined and strong woman into a confused and anxious one. Praying for wisdom before speaking to the family of a person affected by this disease is good advice.

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    1. Yes, I thought that so many of Groothuis’s suggestions were great, including the admonition to avoid asking vague questions about the patient’s well-being. If they are in decline, it’s hard to always be delivering bad news.

      Liked by 1 person

  2. Michele, I was totally unaware of aphasia until my cousin’s husband began the long journey. Thank you for sharing and I will share with her this book title. It has been so painful for her, but she handles each day with grace from the Father. Blessings~

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    1. Just reading about aphasia gives me twinges of claustrophobia–I can’t imagine not being able to express myself. It’s great that this book has come along at a time when it may be helpful to your cousin.
      Blessings to you!

      Liked by 1 person

  3. This is so tender, heartbreaking, and yet encouraging at the same time. Grief is often the greatest of dichotomies. We experience sorrow and not simultaneously. God’s grace makes all the difference. Have a wonderful week!

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    1. I thought the book was helpful for anyone in a caregiver role, and especially appreciated the author’s gritty honesty in sharing his disappointment with God and the many temptations he encountered that are unique to that particular season.
      Thanks for reading, Linda!

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  5. Michele, WOW! This quote is so powerful, “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.” Such a clear, succinct description of the Truth. My own dear mother passed away in 2010 due to dementia. This book is a God-send to those walking through this valley. Many blessings to you!

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    1. Yes, I”m hoping the book lands in the hands of people who are struggling in the same way, and also I think it offers the rest of us some much needed perspective in how to help, how to talk to and about a dementia patient. It’s a long-term kind of suffering that is really uniquely taxing for a family. So sorry, Beth, that it was part of your story.
      Blessings to you, and thanks for sharing!

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  6. Such a heart-breaking journey, but so good to see God’s grace manifested throughout.

    We went through the difficult “How is your mom?” questions re my husband’s mother. For a while we could only answer, “She’s declining.” But people would blink as if not expecting that answer. When one gets to be 85 and was removed from a nursing home to die at home – it’s not going to get any better. Now, at 90, she has been on a plateau with no change the last four years, and our standard answer to questions about her are that she’s doing “about the same.” Some people have felt unsatisfied with that answer. “No, how is she, really?” But there’s not much else to say at this point.

    I used to dread walking into a sea of cheerful Sunday morning “How are yous?” The context doesn’t really allow for anything other than a return cheerful, “Fine, how are you?” And that’s not always real life. Yet we also know the other person isn’t really asking us to unburden ourselves right then. On the other hand, we really do want to know how people are, whether good or bad. So I don’t know how it could be changed.

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    1. Oh, the body of Christ has so much to learn in our management of disappointing prognoses and the sadness of persistent loss. I was just reading Psalm 25 earlier today and noted the roller coaster of emotion expressed there, and that’s really more true to life than what we try to portray on Sunday mornings.
      The quote from Groothuis on the image is the statement he made when he felt that the listener could handle it, and in many ways, it’s the situation we are all in, whether we realize it or not.

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  7. Michele, such a heartbreaking but beautiful story. Having lost both of my in-laws to dementia, it is a hard and long road. We need to learn and glean wisdom from the experiences of others. Grateful you shared this review and grateful to have discovered which book the quote on “uni-tasking” came from. Blessings, friend!

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    1. I really thought that word and that manner of thinking was so helpful–I have such an addiction to multi-tasking and have practically made a god of efficiency. Thinking about the diminishment of our capacity to speak and to think forces me to assess where I’m placing my sense of the value of people (including myself!).

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  9. What a profoundly wise and tender book about such a difficult journey. Thanks for sharing this gem. I think too often we try to cheer up the caregiver because WE are uncomfortable with their grief. We have much to learn about the Jewish practice of “sitting shiva.” My oldest grandson who will head off to medical school in another year is working at NIH this summer in a lab working on Parkinson’s Disease. He shares exciting promising news about what researchers believe they are discovering and close to where that disease and Alzheimers are concerned. I hope they are right!! Blessings on your weekend!💕

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    1. That’s very good news, Pam, and I appreciate your reference to the Jewish practice of dwelling in that uncomfortable place with a loved one. We really are so very poorly equipped here in North America to look at suffering and to find hope WITHIN it rather than pulling the Merry Sunshine script because we don’t know what else to say.

      Liked by 1 person

  13. My daughter was a caregiver for 4 years to a woman who suffered with a form of aphasia. And it was so heartbreaking to hear of all of the loss that had happened in her life before it came to the point that my daughter was needed to stay with her all day. It was a blessing, though, to feel the Spirit of Christ still alive in her heart when a moment of clarity would shine in her eyes. Up to the very end, there would be brief moments that let us know, that yes, indeed the soul is very much alive, even when the body is decaying. Thank you for sharing these precious words today. Lament is such a crucial practice when we are hurting. The Psalms are such a good example for us to be honest and real with our pain, and to find the hope of the Lord waiting for us right there.

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    1. I could almost feel claustrophobic reading about Becky Groothuis’s aphasia–Just imagine not being able to communicate. And yet, you are right, by entering into lament, we experience the full measure of Jesus’ time on this planet, and the Scriptures give us the words for it.
      Blessings to you, Bettie, and thanks for joining this conversation with so much truth.

      Like

  14. Getting dementia is one of my biggest fears about the future so I tend to want to avoid these kinds of books. But I shouldn’t. This sounds good. Thanks for sharing, Michele.

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    1. Yes, I find these books challenging to read (also books about illness and paralysis!), but the lessons the authors bring to the table are so important for me to absorb.
      Thanks for reading, Lisa!

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  15. This sounds like a powerful book. One I’ll want to read and share in appropriate situations. At 69 and 70, my husband and I can’t help but think about the possibilities we all face in the broken world of ours. Those thoughts come when you lose a thought mid-sentence or when a story you’ve told a dozen times suddenly escapes your memory. Another powerful book on the subject is Robert McQuilkin’s “A Promise Kept.” Thanks for another great review. I don’t know how you manage to read all the books you do, but your reviews bless us all and cause our want-to-read lists to be endless! 🙂

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    1. I’ve heard of McQuilkin’s amazing story.
      And yes, we do have to let ourselves “go there,” because we don’t know what our futures hold. I find books like this to be a bit difficult to read, and yet good preparation for helping others along the way.

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  16. Thank you, Michele for another thought-provoking review. My aunt is now beginning to show early signs of dementia, and the loss we are all feeling is real and messy. I’m slightly afraid to read the book, yet I know that I really should. This disease is so pervasive, the more prepared we are to walk with each other through it the better.

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    1. Yes, it does seem to be everywhere, and, Carlie, I’m so sorry that your aunt is on that very sad track. Last summer we lost a dear friend after a long struggle with dementia, and it really ended up feeling like two losses when all was said and done because we had lost her delightful personality and her input to conversations so long ago.

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  18. This sounds like such a powerful book – both heartbreaking and inspiring. I can relate to that battle of faith through times like this – having lost my daughter this year and also having seen the effects of dementia on my dad. I can certainly relate to Christian lament being a sorrow that is mingled with hope. God is indeed present in the twilight. #ablogginggoodtime

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    1. Louise, I’m so sorry for your loss. What a year you have had. It’s inspiring to me that you are able to find hope in the midst of sorrow and to bear witness to the presence of God in twilight. I’m grateful that you’ve shared your thoughts here today.

      Like

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