In grad school about a decade ago, I ran across an article that provided guidance, inspiration and reassurance for exhausted dementia care partners. Is there anyone out there caring for a person with dementia who is NOT exhausted at this time of year? If so, please send me YOUR insights to share in a future blog!
Wayne Ewing’s article, “Land of Forgetfulness: Dementia Care as Spiritual Formation,” recounts his journey as caregiver for his wife who was diagnosed with early onset Alzheimer’s disease at age 55. Wayne quickly realized that his skills as a clergyman and educator, while relevant, were not the entire package of what he needed in order to cope with the change in his “Beloved,” as he calls her, and to navigate the transformed waters of their relationship.
Wayne considered the wide range of needs that both he and his Beloved now had to contend with. He figured them out one by one and in time, Wayne discovered that he could meet his Beloved in the present moment. As they walked together in a pine forest near their home, he marveled at and shared in the delight and awe she expressed at the beauty around them.
This led Wayne to begin to ruminate on the Alzheimer’s Association’s Ten Warning Signs of Alzheimer’s disease. Using an impressive knowledge of many religious traditions and spiritual scribes, he imagined how all those (scary and depressing sounding) warning signs might be looked at in a new light, the light of spiritual formation. He handily spun that list into Ten Steps in Spiritual Formation, pointing out the following:
Memory Loss…St. John of the Cross described “the sum of all perfection” as “the oblivion of the world.” How many people on earth use meditation or other practices precisely to clear the mind of details that keep us away from enjoying the here and now?)
Problems with Language…Mother Teresa said, and religious mystics have agreed, that “God is the friend of silence.”
Disorientation of time and place…Meister Eckhart wrote that “the soul who knows God knows God above time and place.”
Poor or decreased judgment…All religions counsel us to abandon judgment. For example, the Bible tells us to “Judge not, and ye shall not be judged” (Matt. 7:1).
Problems with abstract thinking and problem solving…In many spiritual traditions, this is viewed as a stepping stone towards an increased ability to dissolve ones thoughts and create calm.
Misplacing Things…can be seen as a sign of losing attachment to material possessions… (I plan on reminding myself of this one the next time I misplace my phone!)
Changes in mood or behavior…Nicolas of Cusa notes that these changes are required in order to gain spiritual wisdom.
Changes in personality…Nicolas of Cusa also maintains that personality changes are to be expected if one is to grow spiritually.
Loss of initiative…Meister Eckhart’s advice was to be passive in order to allow the holy to be active within us.
Wayne’s thinking reminds me of what I have learned about a common Native American view of persons with dementia: that they are actually in communication with the spirit world at a level that none of the rest of us can understand. This way of looking at dementia intrigues me. It supports my certainty that even though a person with dementia may be quiet, important spiritual work of some kind is going on, deep inside.
I thought I would wrap up the blog right there. But no. Here goes.
My beloved husband died of cancer over 5 years ago. He was on hospice for a little over two months, and bedridden for just a week and half. Phil was an extremely smart, hyper-witty, charming, snarkily funny guy. He had been an actor since he was 6 years old. He could be very loud on occasion. It was amazing to see Phil become so quiet in his last weeks. While it didn’t occur to me at the time to use the term “dementia” for anything that was going on with him, it was several years later that I suddenly realized that he actually was exhibiting dementia symptoms in his last 10 days: trouble with language and motor skills, disorientation, nonsensical speech, lack of initiative. For a time, our verbal communication consisted of him whispering the last few words of whatever I had just said to him back to me. But one day, he departed from that pattern. When I said, “I love you,” he replied, “I love you too.” How one little word can mean the world! That was the last thing he said to me, or anyone. I had assumed I’d be playing all sorts of his favorite music as the end drew near, but instead, it felt to me like he was very busy inside (and things were probably noisy enough). It seemed that the spiritual journey he was on required his entire focus and attention. I think (and hope) that was the right call.
Wishing you and whomever you care for a calm and bright new year!
-- Marysue Moses, Ebenezer Dimensions Program Coordinator, firstname.lastname@example.org
Wayne Ewing’s article, Land of Forgetfulness: Dementia Care as Spiritual Formation” is published in Religion, Spirituality, and Aging: A Social Work Perspective, by Harry R. Moody, The Haworth Social Work Practice Pres, 2005.
Thanks also to Megan Carnarius for information on the Native American view of dementia, and to Mirjam Berger and David Cobb for insights related to Wayne Ewing’s article.
Dementia Care Coordinator
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