One Caregiver’s Journey with Dementia

By Anne Felton. Pendle Hill Pamphlets (number 477), 2022. 29 pages. $7.50/pamphlet.

“In the beginning was the word . . .” is Anne Felton’s first line in her One Caregiver’s Journey with Dementia. The word? Dementia. “Oh my,” I whisper to myself, “this is pretty close to home.”

Caring for someone living with dementia is something that many people have experienced or will experience at some point (about 5.8 million people in the United States have some type of dementia, according to the CDC), and it’s something that I have frequently observed as a hospice nurse. But a glance at this Pendle Hill pamphlet’s summary reassured me that it’s not so much about loss and grieving as it is a lovely story of Felton’s inward experience as she and her husband, Keith, lived through the several years of his decline.

What caught my attention were the things she chose to tell—in 29 pages, no less. You probably know of John of the Cross’s Dark Night of the Soul. She found him to be a kindred spirit when it seemed as though God was no longer present to her. She found a friend in Christine Bryden, whom she met at Silver Wattle Quaker Centre (similar to Pendle Hill study center in Pennsylvania), which is on Lake George in Bungendore, Australia, about 400 miles from Felton’s Australian home. Bryden’s encouraging words and her book Will I Still Be Me? Finding a Continuing Sense of Self in the Lived Experience of Dementia was a turning point for Felton, along with Elizabeth MacKinlay and Corinne Trevitt’s Finding Meaning in the Experience of Dementia. The suggestion that spiritual growth could happen while living with dementia opened a whole new world of possibilities for her and for Keith, as well. Even more than that, there was a chance for new growth in their marriage. Felton writes about their daily spiritual practice of meditation and Quaker worship, just the two of them at home and then with Friends in and around Canberra. She enrolled in a spiritual direction training program whose purpose was to “inspire people to experience authenticity in their lives as they connect with and explore the ground of all being, that deepest of truths which is beyond life and death.”

After eight years, the day came when Felton realized that she could no longer care for Keith at home. They agonized over their decision to have him live at a local memory care facility. She was tormented with anxiety and found herself back in that dark night again. She needed a little light. Her spiritual director suggested that she use an image of divine light to show her what was going on.

Felton saw that her fears had to do with letting go of controlling Keith’s care. They found favorite places near his new home where they could go for walks and sit in silent worship. There was deep joy in the simple pleasure of just being together. “I like it here,” Keith said one day, and then continued, “aboriginal people are here.” She was startled. He told her that he felt the presence of the spirits of people who had lived at that place thousands of years ago. “Come on, Anne,” I blurt out, “please tell me more about that conversation.” But no, she goes on about how she appreciated anew the things about Keith that she loved: his wonder and enjoyment of taking a walk, noticing a particular flower or a rocky outcrop. Then the day arrived when he could no longer take these walks with Felton. Knowing that the end was near, she read passages from the Bible and the writings of early Quakers as she sat beside his bed. Keith was becoming less responsive almost on a daily basis, and then he passed away in early 2020, just weeks before the pandemic began.

Felton concludes with a reference to Ecclesiastes: “If we embrace whatever comes, we need never to brood over the shortness of life, for God will keep our hearts filled with joy.” She came to realize that her spiritual path was to accept that she could not control Keith’s decline and to surrender her situation to God, and she found a new level of peace and joy. Felton’s story is an affirmation of things to be learned along the way: of living through the dark night, of finding the Light, of letting go, of acceptance. This short pamphlet could be a lovely gift for someone you might know who is on a similar journey.

Brad Sheeks is a member of Newtown (Pa.) Meeting. He is retired from hospice nursing. He is also retired as a co-leader (with his wife, Pat McBee) of couples retreats for Friends Couple Enrichment when it was a program of Friends General Conference.

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