(This is a feature I wrote for Good News Magazine back in 2000)
How Alzheimer’s other victims have loved, persevered and come to terms with one of life’s most dehumanizing diseases.
Love never fails. But . . . whether there is knowledge, it will vanish away. For now we see in a mirror, dimly, but then face to face. Now I know in part, but then I shall know just as I also am known. And now abide faith, hope, love, these three; but the greatest of these is love. (1 Corinthians 13:8,12—NKJV)
The greatest of these is love. When knowledge vanishes, or faith and hope are tested, love can fill the depths of our need, coloring our perspective with the hue of what’s important, what is lasting. And certainly, love can give us reason to live when all else falls away.
Alzheimer’s disease is a vile falling away. It strips a person of their personhood: their sense of knowing, of connecting with their world and with other human beings through words, communication, deliberate emotion, and awareness.
But, equally tragic, it plays the sadistic trick of torturing not just the victims of the disease, but those who love them as well. Of course, all serious illnesses have this effect. But, unlike other diseases which attack the body, taking a loved one far too soon, Alzheimer’s assault on the mind often lingers, ever slowly robbing families of a loved one’s essence while typically keeping the rest of the body in tact for years.
So, the story of Alzheimer’s must certainly include the families, the caregivers, as well as the victim. And, understandably, the conclusions drawn by loved ones in the face of such tragedies are most passionately held, and often differ, depending on the effects of the disease and the personalities, backgrounds and beliefs of all those involved. But the one constant, at least in the following distinct testimonies, is the greatest of these. Here are three stories:
“My whole life, I’ve called her Mama. Now, I just call her Mom,” my wife, Zolla, realized recently. Her own mother, Betty Wadsworth, 76, was only a few years ago diagnosed with Alzheimer’s.
Zolla’s sister, Joyce Striclyn, living close to her parents, is one of their mother’s primary caregivers, along with another sister, Noretta, with various other family members pitching in, eight children in all.
Joyce describes the day her mom was diagnosed: “[The doctor] asked her if she had any children. She hummed around a little bit, then decided, yes, she had some children. And, that day, she was married. He asked her to name her children, and she looked over at me and said, ‘There’s one. Ask her.’”
Sweet, playful remarks have been a trademark of Betty’s life long before they were mixed with such a bittersweet irony. Sometimes Alzheimer’s can alter someone’s personality as well as their intellectual prowess. In Betty’s case, however, while the disease has increasingly diminished her mental confidence to articulate or define what’s important to her, her endearing, gentle personality to this point has remained untouched.
“We’ve learned things from Mom,” says Joyce. “We have learned that, even when she doesn’t have her mind, she is still sweet and kind and loving. I don’t know that I’d pass that test.”
And yet her children increasingly mourn the loss of a woman who is still very much alive. Not having the closest emotional bond with their mother, Joyce describes how she bonded with her children rather through mutual experiences, and how they are sorely missed:
“She would always do fun things with us: projects, quilting, cooking,” she says. “I grieve her loss of ability to cook and to be artistic, her love of gardening, her creativity as an expression of herself.”
One talent that does remain, however, is Betty’s devotional adoration for God. Where her vocabulary has diminished in most other areas of life, Betty can still sing the words to the older church hymns from beginning to end with only occasional difficulty.
“She likes being in church,” remarks Joyce. “Although, it makes her nervous when people come up to her and say, ‘Hi, Betty,’ because she doesn’t know who they are. And, then she gets real close and sticks real close to me. But, when she sees her sister, Nora Belle, she’ll literally run across the room and give her a kiss.”
As with the hymns of God are Betty’s childhood memories. Forgetting the names of most everyone else around her, Betty can still name her brothers and sisters. Like many stricken with Alzheimer’s, Betty’s short-term memory has been replaced by an awareness of long ago, when she was perhaps bursting with the potential of youth, and life was more simple and secure.
Her only remaining and closest sister, Nora Belle, describes a time a few years ago when she sat down and tried to read the Bible with Betty, and felt a painful difference. “It was terribly difficult. I recall [in childhood] that I would sit next to her in Sunday School because I was afraid that I wouldn’t know a word when they called on me to read out of the Bible. So, I would sit next to her because she would always tell me the word.”
“And I thought when we were sitting there trying to read at the table that day—‘this is strange. I’m telling her.’ And, that never, never occurred. She was always the one helping me.”
Alzheimer’s is frequently shown to be a genetic disease, so Nora Belle is relieved not to have yet seen any sign of it in her own life. But Betty’s illness has been the next in line of many past such cases in their family, including their mother, aunt and grandfather. So, for Betty’s own children, my wife included, there is the added burden of not only seeing the mother they knew fading away, but perhaps fearing for their own futures as well.
“We are so fragile and we don’t realize it,” muses Joyce. “We think God has given us this brain and the power to think and the power to create and the power to choose and we often think we’re God. But, we still are fragile people and we are totally dependent on God. And our ability to reason, to choose, to think is all a gift from Him.”
And yet with my wife’s mother, despite the stark symbolism of her illness, much of the core of what has made her so lovable still holds fast. Not all families with Alzheimer’s are allowed this reprieve, so understandably, not all will draw the same spiritual solace. But, in the midst of their loss, God’s redeeming hand hasn’t been hard to find.
Says Joyce: “I think that having mom in my home helped me to conclude that you can’t determine when it’s time for somebody else to die. God can use people in all sorts of physical situations. He can use those people to teach the lessons to his children that he wants to teach. So, mom can still teach us things in her state of mind. Although, I would not want to be her, I can learn from her. She’s good all the way through.”
“I think our reflex as Christians is to look for the good in all things, but in so doing we often miss the point,” says Daniel Dickerson. “The point of suffering is not to find the beauty in it—the point of suffering is to learn to put your trust in, and rely completely on God. God is more important than our pain, and he is infinitely more able to take care of us during difficult situations than we can imagine.”
In her 9th year since showing the first signs of Alzheimer’s, Daniel’s mother, Frances Dickerson, was home alone with her husband in Tucson, Arizona when a powerful storm blew through town. Once described as a pleasant, upbeat, even bubbly woman, Alzheimer’s had beaten her kind demeanor into submission, leaving her far more anxious and fearful of the unknown, which for her had become nearly everything.
The storm came hard that night and sent her into a panic. What was worse, it had been some time since she either knew or trusted her husband of 35 years—he had become “that man” who would seemingly badger her, invade her privacy and make her do things she simply didn’t want to do.
Physically still a powerful woman, Frances took a kitchen knife, pacing around the house as she was often prone to do, assuming various defensive postures. “She didn’t recognize my dad, and she felt threatened,” says Daniel. “It was then that we realized we wouldn’t be able to take care of her for much longer. We were beginning to be at risk.”
In a few days, says Daniel, they were forced to place her in the local hospital’s secure wing. “We walked in the door and she knew full well where we were and why. She clung to my arm fiercely and trembled as people walked by. We made our way back to the secure area, and when the door locked behind us she cried and clung to me and begged us with what little words she could speak. It was the most horrible thing I have ever done. I wanted to die that day.”
Frances was only in her early 50s when she was released from her position as an intensive care nurse for what was then called ‘mental incompetence.’ It’s extremely rare that Alzheimer’s would strike so early in life—most who fall victim start showing signs in their early to mid-60s or later. So often, the physical frailty of age coincides with the mental decay.
However, Frances’ physical appearance and ability remained strong for many years from the start of her mental decline, which frequently made her difficult to handle. As the dementia progressed, she would often escape from her family’s grasp, later forcing them to place an ID bracelet on her wrist so they could track her.
“Her vocabulary was almost completely gone at this point,” remembers Daniel, “and she no longer sang in the mornings. Instead, she whistled a constant, aimless melody. She whistled constantly. Whenever you didn’t hear the airy, aimless tune of her whistle, you knew something was up—she had probably just escaped.”
In a later incident, Frances turned up missing for days, only to be found with blisters on her feet almost 30 miles away from where she started. Still hoping to care for her themselves, her family had to place deadbolts on the doors to keep her from fleeing.
Then, after the incident with the knife, they were finally forced to give up on a 9-year commitment to keep her at home with the people who loved her most. In the cold halls of the secure nursing home, she paced and paced, often to the point of collapsing, like so many in her state, simply trying to find her way home. Her physical health final succumbing, Frances died 5 years later, only a few days after her 40th wedding anniversary.
The early attack of the disease and the painful change in Frances’ demeanor made the 14-year journey especially tragic for Daniel, his father, and other siblings. To them, they’d been cheated of knowing and loving a mother who had so much life and potential, and whose time had just not yet come.
Says Daniel: “One of the more troubling parts of Alzheimer’s for me is the idea that our minds are made up of chemicals. . . I usually think of my personality and my mind as being something fundamental and unchanging about me. It’s who I am, I would say, and they can’t take that away from me. Well, in this world, they can. . . I can only hope [my mother] wasn’t even here during the last 5 years of her incarceration on earth.”
“But, when I reflect on my experiences taking care of my mother for 9 years, I realize how much of God’s strength and grace I experienced. I should have been crushed, but I came through fine. More than fine, even. I look back, and I am amazed at the strength I felt, and the peace of mind, even during some of the tough times.”
“Alzheimer’s is a horrible, dehumanizing illness, and I may never understand why my mother was struck with it, but I can say with certainty that God is a powerful refuge, and he can bear all of my burdens with ease. And I’ve learned to trust in him.”
In 1990, Robertson McQuilkin retired from his 22-year presidency at a prominent Bible College to care for his wife, Muriel, who had been stricken with Alzheimer’s several years before.
Although Muriel suffered from most of the typical symptoms of the disease, she somehow still knew and was fiercely dependent on the man she married. So, McQuilkin gave up his career to devote his life to caring for his progressively fading love. Today, along with his daughter, he cares for her still, 23 years now from the onset of her illness.
In his 1998 book, A Promise Kept, McQuilkin writes: “It was no great effort to do the loving thing for one who was altogether lovable. My imprisonment turned out to be a delightful liberation to love more fully than I have ever known…Twenty summers ago, Muriel and I began our journey into the twilight. It’s midnight now, at least for her. Sometimes I wonder when dawn will break. Even the dreaded Alzheimer’s disease isn’t supposed to attack so early and torment so long. Yet, in her silent world Muriel is so content, so lovable, I sometimes pray, ‘Please Lord, could you let me keep her a little longer?’”*
The human tragedies that come from living in a fallen world are countless. In the face of a tragedy such as Alzheimer’s, a loved one’s faith in what is just, what is good, is often stretched beyond the frame of what a loving God could ever allow.
The disease is never kind, but sometimes in the midst of its wretchedness there are sparks of redemptive light, teaching us lessons about God’s provision in spite of such worldly darkness.
Perhaps the greatest lessons learned are how so few things in this life are incorruptible, and how God is their only source. And through all the suffering, we pray for those who have left us, whether still in the body or not, and we survive, knowing that we have loved them well with the love of God—the greatest of these.
* Excerpt used with permission from Tyndale Publishing.