When Elbert Cole’s wife, Virginia, was first diagnosed with Alzheimer’s disease, she hinted at suicide. But she and her husband quickly agreed that such an action would violate the values by which they had always lived.
Instead, Elbert made a deal with her. “Let’s split things up,” he said. “Your task is to enjoy life, mine to manage life. Let’s see who can do the best job with our part of the contract.” For almost two decades until her death in 1993, this is the way they cooperated.
Elbert Cole is a Methodist minister who lives in Kansas City, Missouri. In many parts of the country he is well known for his work in aging and spirituality. Among his major achievements, in 1972 he founded the Shepherd’s Centers of America, a network of nonprofit organizations that provide spiritually motivated services to older people.
Rev. Cole also deserves to be widely known for the creative way, over her last seventeen years, he provided care for the woman he married in 1939. His accounts of this experience show how valuable spiritual ideals are for the difficult challenge of attending to the needs of a person with this crippling illness.
Incidentally, Elbert does not stand against sending a person with Alzheimer’s into an institution. However, he saw it would be possible for him to integrate caregiving into the normal routine of life. Not everyone could do it this way but he shows the advantages of such an approach.
Elbert’s concept of caregiving is altogether special. “Caregiving is a partnership,” he writes. “The person receiving care is as much a part of that partnership as the caregiver, with each having a duty in the transaction.”
My friend Elbert was convinced that people with Alzheimer’s need to know they are loved and respected. To the extent possible they also need to be stimulated in body, mind and spirit. They should be included in the activities of daily life and even feel needed.
Elbert also believed that “stimulation was essential for the human spirit.” He was convinced that this need remains even when a person suffers the cognitive damage that is characteristic of Alzheimer’s. He came to believe that this approach actually made caregiving easier than it would have been otherwise.
These challenging goals demand that the person receive much attention. That is what Elbert provided his wife each day, taking her on his round of professional duties and making sure that she was a part of everything as much as could be.
Thus, for example, when he would give a workshop he would place a chair next to him for Virginia or he would have her sit in the front row. She also would accompany her husband on his frequent travels around the country and be present at the events in which he took part. Determined not to allow their loving partnership to suffer, Elbert continued to involve Virginia in his regular schedule and the same lifestyle.
The couple’s two adult children also had a role. Their daughter, who lived in California, agreed to take responsibility for keeping her mother well groomed and instructed her father in how to manage dressing and hygiene. Their son, for his part, agreed to use his scientific know-how to research the latest findings on Alzheimer’s disease to recommend what treatment break-throughs might be discovered.
Albert has described in detail the ways in which he managed daily tasks for his wife. He worked out methods of dressing her, making her comfortable in bed each night, bathing, and toileting. The intimacy of their lives together took on a new intensity as her needs became more pressing.
When he put her to bed each night, Elbert would alternate saying the Twenty-Third Psalm and the Lord’s Prayer. This would help prepare her for a good night’s sleep and offered her the reassurance of a familiar ritual.
As he looks back on the seventeen-year experience, Elbert Cole does not regard himself as outstanding, much less heroic. Instead, he summarizes what most people would think a trial by fire as “no big deal, no burn out, no unbearable burden.” To him it was all part of his human vocation, the contract of love between marriage partners that moved him to insure the personal dignity of his beloved wife right up to the end.
Richard Griffin