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).

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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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No Bitterness in the Wait — Embracing the Aging Dream

Most of the dreams that carried me forward and burned brightly in young adulthood lost their luster years ago.

My twenty-something self would be mortified at the woman I’ve become.
I can imagine her indignant voice, hand on hip, eyes wide:

“What? No gym membership?”

“How many kids did you say you have?”

“What is this shipwreck you’ve made of our resume?”

But then, for most of us, there is a dream or two that sticks around, still cherished and yet unfulfilled.  It reminds us of its presence with a subtle pressure, like a pebble in the shoe.

Dreams with a long shelf life can light a spark in middle age, or . . . they can become the seedbed for bitterness and regret.  Sarah (Old Testament wife of Abraham and matriarch of the Hebrews 11 “faith chapter”) knew well the taste of disappointment and frustrated dreams. Over and over she heard about The Promise, a major topic of Abraham’s heart-to-heart talks with God:

“The Father of a Great Nation,” God had promised.
“Children as innumerable as the stars in the sky,”

God had spoken, and Sarah had worked hard to believe.

Are you finding yourself, along with Sarah, wondering if the promises of God apply to you?

Does is seem to you as if hope is something for the young and the uninitiated?

CaptureI’d love it if you would join me over at God-sized Dreams today for more of Sarah’s story and a challenge to press into the truth of Scripture where we read about the laughter of dreams fulfilled that follows the tears of sowing seed and long waiting.

While you are over there finishing my story about the power of Truth to cast out fear, I hope you’ll meander around the site and be encouraged by others who have set sail on the journey toward their own God-sized dreams.

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In just a couple of weeks, we will begin what I hope will be a leisurely and joyful read of Jayber Crow by Wendell Berry.  The humble bachelor barber of Port William, Kentucky is surrounded by a cast of characters that weave in and out of his story, sharing their wisdom in their turn.  In light of the tragic mayhem of recent days, these words from farmer Athey Keith frame simple truth:  “It might prove out to be that if we can’t live together we can’t live atall.  Did you ever think about that?”

If you enjoy reading Living Our Days, subscribe to get regular Bible studies and book reviews delivered to your inbox.  Just enter your e-mail address in the field at the top of this page.

I link-up with a number of blogging  communities on a regular basis.  They are listed in the left sidebar by day of the week.  I hope that you will take a moment to enjoy reading the work of some of these fine writers and thinkers.