Thornton Wilder wrote, “Even memory is not necessary for love. There is a land of the living and a land of the dead, and the bridge is love, the only survival, the only meaning.”
My Dad died by degrees. Similar to many patients with Alzheimer’s Dementia, his illness spanned more than a decade. He first lost memories, and then progressively lost the use of language and his ability to concentrate—both of which led to loss of independence. Ultimately, he lost his ability to function or interact with the world in any meaningful way. As the anniversary of his death on August 12, 2008 approaches, I’m reflecting on his legacy, the effects his illness had on him and his family, and lessons learned.
For most of his life, my father maintained the disciplined, time-conscious life that he had learned first in his years at Hargrave Military Academy and later during his stint as a pilot in the U.S. Navy. We Hines children and my Mom were marshaled into this same disciplined life for our meal times, our bedtimes, and even our vacations. I vividly remember our compulsory 3-minute ‘military showers’ in a household of 6; we all vied for the contents of our hot water heater each morning of the work/school week, and Dad’s training provided a solution.
Aside from his discipline, Dad was also a creative and inquiring man. He learned to whittle as a hobby in his childhood. As he honed this skill, his many creations included an antique-reproduction trestle table, decorative decoys, and a variety of whimsical, miniature figurines. He pursued this artistic expression until the middle stages of his Alzheimer’s Dementia, when he no longer remembered even the basics of carving and his well-used whittling knives became dangerous in his hands.
The wooden brogan shown with this article is one of my most cherished possessions. Dad carved it during his 40s. Its detail is exquisite, down to the uneven wear of the heel and the creases in the toe. Believe it or not, this realistic boot is a mere 3 ¾ inches in length and is carved from a single block of wood. It epitomizes the meticulous craftsmanship Dad embodied much of his life. I am so thankful I asked Dad if he might gift me this treasure when he still had the presence of mind to understand my request. It is a precious legacy of my Dad, the artisan.
Folks who met Dad in the final decade of his life missed the opportunity to see his inquisitive brain at work, and to experience his quick wit, frequently punctuated by puns. They didn’t know him as a handyman extraordinaire who could repair hall clocks, and washing machines, who even built a go-cart from scratch when my older brother, Bill, and I were young boys.
They never heard his richly melodious bass voice augment church choirs as we moved from Richmond, VA to Columbia, S.C. to Atlanta, GA because of his advertising career transitions. They didn’t experience any of the joy-filled musical evenings around our old upright piano at home, when he and Mom would playfully duet such classics as “Take an Old Cold Tater and Wait” and “She was Poor, but She was Honest.”
Like many dementia patients, Dad’s first signs were subtle. Only in retrospect do we remaining Hineses recognize the earliest symptoms of his cognitive loss that began some 15 years before his death. Subtle beginnings are not uncommon for dementia; patients mask their memory loss, and families are eager to deny that anything’s wrong.
The most poetic description of the brain’s slowing metabolism that I’ve seen, comes from a researcher at the Mayo Clinic, Prashanthi Vemuri, who said, “The brain is like a city of lights, and there is a slowly spreading power failure.” This slowing, coupled with the shrinkage and death of brain cells, creates the progressive cognitive failure of dementia.
Alzheimer’s Dementia is not the only form of dementia, but it’s the most common, accounting for 60-70% of dementia in the US. Vascular dementia, caused by damaged blood vessels in the brain is the second most common form. These two dementias can, and frequently do, coexist in aging brains. A combination of laboratory tests, brain-imaging studies, and neuropsychiatric tests aid in precise diagnosis, though end results of dementia can be quite similar.
Current estimates indicate that Alzheimer’s disease will affect approximately 1 in 9 US adults aged 65 and older, with incidence increasing each decade. The average time from recognition of Alzheimer’s dementia to death is about 8 years, though patients may have a much shorter course, or a longer one, as in the case of my Dad.
In Alzheimer’s disease, characteristic hard plaques between nerve cells in the brain and fiber tangles within the cells themselves develop—both results of malfunctioning proteins. But this isn’t the whole story, as I’ll explain later.
Clinicians mark three phases in the progression of Alzheimer’s dementia; we witnessed each of these stages in my Dad. The first stage is characterized by progressive memory loss. In the middle stage of dementia, patients begin to get lost, dress in wild combinations of colors, mix clothes with pajamas, and lose their ability to use the telephone, cook safely, or recognize friends and family. Emotional fluctuations can be pronounced in this stage. In the late stage of the illness, function declines progressively. Ultimately, people lose the ability to speak at all, to sit, to eat, and to control bowel and bladder function. One of the last abilities lost is one’s capacity to smile.
There are several classes of medications currently available to treat Alzheimer’s dementia. They are helpful in slowing progression, even stabilizing the disease, in the early and middle stages. In late stages of the illness they tend to be ineffective and, in fact, can create worrisome side effects.
Since the stages of dementia are predictable, I urge you to share stories, understand priorities and goals of care, and to make amends and heal old wounds while you still can. Don’t miss a chance to say, “I love you.” Though my Dad and Mom had dutifully created Living Wills in their 50s, the opportunity to reflect with Dad about changing goals of care dissolved steadily as his reflexive responses replaced reason and deliberation. In his dementia, he transitioned from a keen observer and thinker into a subdued, progressively fearful invalid.
A final lesson from my Dad’s dementia: I now know that his significant hearing loss in later years probably contributed directly to his dementia progression. In hearing-impaired individuals, the increased brain work of hearing may rob brainpower that might otherwise have been dedicated to memory and thinking. Additionally, hearing loss can lead to social isolation and further cognitive decline.
Because the illness is so prolonged, caregiver stress is multifaceted and can be profound. Although Alzheimer’s Dementia is characteristically a progressive and fatal disease, it does not usually kill patients quickly. As a result, the caregivers (often elderly spouses) lose their life partners in a staggered, prolonged process that frequently leaves them exhausted and sick themselves.
Additionally, dementia patients often suffer from other chronic illnesses, such as diabetes, heart failure, or advanced lung disease. Luckily, my father had none of these. But, he did have severe arthritis in his feet and knees, and he was a big man. In her caregiving role, my Mom ruptured discs in her low back by dutifully helping him transfer while he was still able to ambulate with assistance. She ultimately required surgery to repair her injuries.
When my Mom was hospitalized for her back surgery and subsequent rehabilitation, my Dad was transferred to a nursing home, where he remained for several years. In June of his final year, he was accepted into hospice care, and transferred to a residential hospice facility where he ultimately died almost 3 months later.
Dad’s time in hospice care transformed the quality of his dying for him—and as importantly, for my exhausted, caregiving Mom, who harbored great feelings of guilt about her inability to keep him at home until his death. Many perfunctory medical rituals were abandoned during those months; all but a few medicines were stopped. The quality of living each day was prioritized. Listening to music, especially old standards from the 1930s and 1940s, became Dad’s most enjoyable pastime as his brain continued to wind down. He owned few words at that point, but his relaxed countenance said it all.
In the early morning hours of August 12, 2008 when my Father took his last breath, my Mom, older brother, and sister-in-law were at his bedside in the residential hospice room. It was a peaceful end to a tumultuous decline that had spanned one and a half decades. I remember my Mom’s worrying that she didn’t, she couldn’t cry for a few weeks after his death. She was emotionally and physically exhausted. The tears did come, but required a bit of healing of her own.
Thankfully, well-funded research into causes, treatment, and prevention of Alzheimer’s dementia is robust. Roles of lifestyle, genetics, and inflammation are all being investigated. New information on the disease’s natural course, and clinical trials aimed not only at treatment but also prevention are especially exciting.
Two large-scale longitudinal studies—The Religious Order Study begun in 1993 and The Rush Memory and Aging Project started in 1997 (both of which require brain autopsies at death)—are providing significant information about the variable outcomes of an Alzheimer’s-diseased brain and progression to dementia. These studies have now enrolled over 3000 adults across the US. It turns out that not everyone with the characteristic brain lesions of Alzheimer’s disease progresses to dementia, even when autopsy-proved damage to brains might be severe.
Why do some people develop symptoms and others not? Genetics, healthy diet, and some life choices actually seem to bolster the brain’s ability to cope with the disease. Researchers are discovering factors and strategies that seem to make the brain more dementia-resistant. Along with healthy diets, it appears that the more engaged people remain—physically, socially, and intellectually—the less likely they are to develop dementia.
Despite the marvelous advances in medical science leading to increasing precision in the diagnosis, treatment, and prevention of Alzheimer’s dementia, there will still be many individuals who advance through the characteristic stages and die from the disease. Take advantage of the early stages to communicate honestly and to share emotions. Please don’t be reluctant to ask for caregiving help, or to understand the blessing that palliative care and hospice can provide in the final stages of illness. Contact your local chapter of the Alzheimer’s Association; they offer education, support, and continually-updated information about community resources. And, until your loved one has taken that final breath, never think it’s too late to hold their hand, or to whisper in their ear, “I love you.”
It’s fitting to close with a beautiful sentiment from NPR’s Scott Simon as he reflected on Garrison Keillor’s final Prairie Home Companion performance. Simon said, “Maybe because his monologues played with words, mind, and voice, they reminded us that life is a fleeting flicker of light in that darkness, and the only real legacy we’ll have is in memories.”
S.L. Hines, MD
July 2016
