Caring for someone with Alzheimer’s disease can seem like being with someone in a world apart.
Perhaps David Bowie unwittingly captured something of this in “Life on Mars” with the lyric “she walks through her sunken dream.” However, when it’s your grandmother, aunt, father, or brother who seems lost to the real world, their dream can feel like your worst nightmare.
Despite the enormous challenges such situations present, the theme of World Alzheimer’s Month 2013 strikes a compassionate note: “Dementia: a journey of caring.”
Society has been moving in a more caring direction over the years. A young nurse-in-training placed on a British dementia ward several decades ago saw patients treated as “warehoused non-persons.” They were given very basic care in a system that acted as though “whoever these people might have been, they are no longer worthy of more than basic care and minimal respect.”
In a paper titled, “Forgetting Whose We Are: Theological Reflections on Personhood, Faith and Dementia,” that nurse-in-training John Swinton – now a professor at the University of Aberdeen – tracks the changes he saw on returning to the same ward as a hospital chaplain 20 years later.
“The attitudes and routines were considerably less rigid, more compassionate and thoughtful. At one level the system appeared to be beginning to see people with dementia as significant persons in need of care, love, recognition, and sometimes protection,” he writes.
Nevertheless, he also sees a great need for further progress. In the paper he tackles the all-important question of the thinking behind the care we give and asks how we are viewing those with Alzheimer’s disease.
“Is the person lost to dementia?’ he writes, before challenging the assumption that an individual is “somehow lost to the disease process” and should be perceived as already “dead and gone.”
Instead, speaking from a Christian perspective, Dr. Swinton says: “Theologically and anthropologically understood, good dementia care has to do with enabling persons to remain in relationship with God and with one another despite the ravages of the condition.”
The paper includes the example of a nurse responding to the spiritual need of an elderly patient with dementia restlessly pacing up and down the corridors of a nursing home, continually muttering a single word to herself.
The nurse got closer to listen. The word was “God.” She decided to walk along the corridor with the patient until, “in a flash of inspiration,” she asked, “Are you afraid that you will forget God?”
When the patient emphatically replied, “Yes!” the nurse reassured her: “You know even if you should forget God, He will not forget you. He has promised that.”
As the nurse explains: “For this lady who was forgetting many things, and was aware of it, that assurance was what she needed to hear. She immediately became more peaceful, and that particular behavior ceased. She was responding positively to care which extended beyond the needs of body and mind – care of the human spirit.”
Such spiritual insights point to what Christian Science founder Mary Baker Eddy once described as the “indestructible relationship” between God and all of us, as His children (see "Science and Health with Key to the Scriptures," p. 470). Recognizing the indelible connection we each have to our Creator can bring comfort in the most challenging of situations.
At times that recognition can have an even more powerful effect. It can restore health. For one individual this proved true in arresting and reversing a case of Alzheimer’s which had taken her “perilously close to suicide.” A pastor helped her through that crisis, and she then went on a remarkable journey of spiritual discovery – particularly exploring Mrs. Eddy’s ideas in her book “Science and Health with Key to the Scriptures.” Although not quick, in time her efforts brought her complete freedom. The account of her healing is published in the Christian Science Sentinel (Feb. 17, 2003, and was also told on Sentinel Radio).
A turning point came when she saw “that God truly is Love” and, she says, “I was able to love God fully, ardently, for the first time in my life.”
After her doctor had confirmed the reversal, she recalls: “The doctor and I told my husband the news that he had reversed the diagnosis. Only three times before in our 40 years of marriage had I seen tears in his eyes. This time they were tears of joy.”
Fellow travelers on their own “journey of caring,” maybe sometimes struggling with the other kind of tears, will understand why such a turnaround would bring so profound a reaction.
But it also points to something that can help all patient caregivers and cared-for patients: They can know that neither of them is ever separate from the divine Love that forever cherishes all His children in their individual preciousness.
Adapted from the author’s blog on washingtonpost.com.