Caring for an Alzheimer’s sufferer may sometimes seem like being next to someone who is a world apart.
Perhaps David Bowie unwittingly captured something of this sadness in “Life on Mars” with the lyric “she walks through her sunken dream”. When it is your grandmother, aunt, father or brother that seems to be lost to the real world their dream can feel like your worst nightmare.
Despite the enormous challenges such situations present, the “Dementia: living together” theme of the ongoing World Alzheimer’s Month strikes a hopeful note.
It is a healing thought. It suggests we can hone the ability to recognize an indestructible togetherness with a loved one, despite any deteriorating loss of the familiar personality through which we have known and cherished them and shared our love for one another.
Perhaps society is moving in a more caring direction then. “Living together” is far from the experience of a young psychiatric nurse-in-training placed on a “dementia ward” several decades ago. At that time John Swinton, now a professor at the University of Aberdeen, was struck by how patients were treated as “warehoused ‘non-persons.’” They were given only basic care in a system which seemed to act as though “whoever these people might have been, they are no longer worthy of more than basic care and minimal respect”.
In a paper of “Theological Reflections on Personhood, Faith and Dementia” Swinton tracks the practical changes he saw on returning to the same ward as a hospital chaplain twenty 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.”
Nevertheless, he also saw a great need for further progress. His paper tackles the question of the thinking behind the care we give and asks how we are viewing Alzheimer’s sufferers.
“Is the person lost to dementia?” one section asks, before challenging the assumption an individual is “somehow lost to the disease process” and should be perceived as already “dead and gone”.
Instead, speaking from a Christian perspective, 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.”
Professor Swinton’s paper – called “Forgetting Whose We Are” – picks up on an example of spiritually astute nursing which recognized an individual’s need to feel confidence in God’s continued care. Margaret Hutchison, a nurse, has written of the experience of an elderly dementia sufferer who restlessly paced up and down the corridors of a nursing home continuously repeating a single word. The staff could not understand her distress and felt unable to calm her.
Until, that is, one nurse got closer and cared about the word she was repeating. It 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 was able to reassure her: “You know even if you should forget God, He will not forget you. He has promised that.”
As Hutchison explains it: “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 His children. Recognizing the indelible connection we each have to our Creator can bring some comfort in the most challenging of situations.
At times that recognition can have an even more powerful effect. It can eradicate a disease. For one individual this even 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 Eddy’s ideas in “Science and Health with Key to the Scriptures.” Although not quick, her efforts eventually brought her complete freedom from dementia.
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.”
Many caregivers, struggling as they do with a sense of frustration and loss, would understand why a turnaround like this would bring such happiness.
In any case of struggling with disease, it can help patient caregivers and cared-for patients to know that neither of them is ever separate from the divine Love that forever cherishes all His children in their individual preciousness.
We can never be less than “living together” with God.
This first appeared in the Washington Post on 21 September, 2012