"It's Alzheimer's." The doctor's words were expected but not welcomed.
The kind, thorough neuropsychologist leaned over her desk and said what we’d both suspected. Then she followed up with two inevitable conclusions:
"Will you now surrender your right to drive a car?" she asked. Margaret agreed without hesitating.
"And you," the doctor turned to me, "now become her caregiver." No question. It was an equally undeniable conclusion.
Once back in our car we wound through the familiar roads in our Connecticut hometown. "So, what happens now?" Margaret broke the silence. For half a century, she had always been the proactive one.
"I think this is what we decided 50 years ago," the answer came without my bidding. "We promised to serve each other in sickness and in health." We drove on in silence, knowing that question was settled. Still, our life together did change drastically. As her husband, my life becomes caring for her.
After lunch at a fast food place near our home, I received a call: "We found Margaret's handbag." A trip back to the restaurant united us with her handbag. She finds comfort from carrying a familiar purse, so I try to ease the anxiety when it temporarily goes astray. As her life-companion, my daily schedule is shaped by her needs.
The psychologists call it "sundowning." In late afternoon, her memory seems to drop off a cliff into the abyss of anxiety. One such day she said: "Have you ever thought of getting married?" I assured her that we were one, but she persisted: "Do you have any paper to prove this?" Digging out our yellowed marriage license, this seemed to bring peace for the time being. As her husband, the vows we exchanged become increasingly one-sided.
Looking at some carved wooden animals from Kenya, she asked: "Where did those come from?" I reminded her of a mission trip we enjoyed together 30 years ago. "Do you remember Kenya?" I probed. "Remember how you waded in the Indian Ocean with our student from the seminary where we taught?” No recognition crossed her face, only that blank expression. The treasured memories are gradually leeching away. As her caregiver, it becomes more and more lonely.
Sometimes, fear sweeps over her heart and mind. She dreads the day when we will no longer be together. Her signal is always the same. She throws her arms around me and says, "I love you. I love you." She sits down next to me on the couch, and she clings as never before in all our years together. In that moment, I realize it's time to lay down whatever I am doing and just embrace her and tell her I love her. For the moment, it's all that matters for both of us. In the quiet of the afternoon or the middle of the night, these moments lend energy and passion to the perilous path we are walking together. As her lover, a touch is all that counts.
"Who is that?" she points to a picture of our grandson and his wife.
"It's Sam and Natalie," I remind her, and she nods in pretend agreement. In reality, recognition is gone. She no longer links faces and names. I remind her that they love her, and some day they will come to visit, although such encounters are often frustrating for her. As her support, I become her memory and her connection to all that once was.
"Shall we go to chapel?" I ask her each Sunday. A lifetime of fellowship with other believers is but a fading dream. Together we walk to the chapel service, where I preach as a pastor in our community. There the light flickers once more. Each hymn elicits her strong, alto voice. She seems to remember the words, and the pitch of her singing is as perfect as ever. For the moment, she is back, the same loving presence that has adorned our pastoral ministry for half a century. As her fellow-pilgrim, I walk with her along familiar paths of praising.
So, what lessons am I learning in the process of giving care?
Caregiving is the crowning ministry of my life. A recent study by AARP discovered that there are 5 million family caregivers of Alzheimer’s and dementia patients in America. For them, it is a labor of love, and it eases the burden of care on an already stressed healthcare network. However, these caregivers often precede their loved ones in death. The sheer stress of daily serving shatters their strength and destroys their health.
So, some sort of respite is a necessity. For each person it is different. Some friends find restoration in regular physical exercise. Our friend Marcia never misses her exercise class. It is a double source of strength. First, it works off stress, and second, it keeps her physically fit.
Others find respite in reading. Over the years, I have discovered some of the most voracious readers among caregivers. At some point in the day, they escape to another world with easier answers and satisfying resolution. Reading not only feeds the mind, it stimulates the imagination creating a wonderful world of mental images.
Other caregivers gain energy from a support group. At a large church in North Carolina, we wove a network of care groups. Regularly we gathered both patients and their caregivers. After a brief introduction, caregivers adjourned to an adjoining room, where they could share in confidence. At the same time, patients opened their hearts to each another. The end result was support for both patients and caregivers.
Jesus declared the enigma: "You’re blessed when you care. At the moment of being ‘care-full,’ you find yourselves cared for."
Still other caregivers find their main release in a devotional time. In my case there are usually two to three hours in the morning when I can have a period of quiet reading and reflection. A valuable outlet is my journal. Periodically I chronicle an event or even a frustration. This helps to deal with the issue at hand, and it provides an ever-growing record of the care process.
One of the most helpful resources is The 36-Hour Day by Nancy L. Mace. M.A. and Peter V. Rabins, M.D., M.P.H. (revised edition, Johns Hopkins, 1991). Not only is this a self-professed "bible" of caregiving, it is a handbook that helps lay caregivers, as well as medical doctors, social workers, and nurses. It details the symptoms of impairment, and it gives excellent hands-on guidance to available help.
One word of caution: caregivers perceive that they are stretched from sunrise to sleep time. Any process that involves time away from the task is seen to be optional at best and detrimental at worst. Personally, I find the Internet to be of exceptional value, because I can access it on my own terms and in my own time.
It is not simplistic to meditate on the words of Jesus in the Sermon on the Mount. He declared the enigma: "You’re blessed when you care. At the moment of being ‘care-full,’ you find yourselves cared for" (Matt. 7:7, The Message). Jesus’ words foresaw the stretch and strain of family caregivers across the centuries.
Wayne Detzler is a resident chaplain at Elim Park Place in Cheshire, Connecticut.
