My interest-turned-passion for spiritual care as a strength and comfort for those living with Alzheimer’s/dementia, whether as one who is living with the disease process or the loved ones/caregivers who travel alongside on the journey, started from a place of absolutely not knowing. As a new hospice chaplain whose seminary education had prepared me for crisis situations but little on how to be with someone through a chronic illness, especially the long, slow decline of dementia, I knew there had to be connection and value from a faith life but did not know how to minister to those with these needs. My hospice orientation dementia training came from a medical model so did little to include how to spiritually interact and connect with persons and families in the late stages of memory loss. From conversations with other chaplains and parish ministers I knew that we were all challenged by the growing prevalence of Alzheimer’s disease and other forms of dementia and our frustrated inability to meaningfully be present with those who did not know that we were there, to those who did not know now who they were. For all of the people with memory loss that we did care for we knew that there were many others on hospice that we did not meet as their families declined spiritual support since they did not see the benefit of it. As chaplains we often heard, “She doesn’t remember church anymore,” or “Religion doesn’t matter to him now,” or “We don’t need you.” This dilemma struck faith leaders’ hearts as we recognized that these beliefs and statements are not true yet we were at a loss to offer spirituality and religion in ways that did connect to someone living with dementia.
My first teacher was Sarah, a Holocaust concentration camp survivor who was in the late stage of Alzheimer’s and had lost her ability for speech as well as the skills to walk, eat or dress without help. She spent most of her time in a wheelchair in the unit dayroom, silent and passively present to the people and the activity around her. While visiting on the second day of Hanukkah, and at a complete loss of what to do of any meaning, I saw a small plastic menorah high on a shelf that was not within sight of the residents. I took it down and placed it in Sarah's hands, wistfully hoping that the feel of it, the sight of it, might in some small way mattered that we had this visit time together. Her response still gives me goose bumps.
Her eyes immediately brightened, her smile was broad, and she clearly and excitedly said over and over, "You found it!" "You found it!" "You found it!"
In that moment Sarah did not hold the small Dollar Store plastic menorah that I had seen but in her mind beyond and long before the ravages of Alzheimer's disease, and it appeared to be before her internment in a concentration camp, she held the menorah of her childhood. The power of an early and important memory was briefly stronger than Alzheimer's disease. Sarah could not state where in her past she was, nor could she describe what her menorah looked like, but her joy was loud and clear.
What Sarah experienced was the comfort and peace of a spiritual moment. The staff was as awed and delighted as I was by her actions, especially the sound of her voice and the strength of her words. Her spiritual moment of joy, delight and her own life story became my first pastoral lesson in the comfort of spirituality for those living with dementia. Her moment opened my eyes to the real possibilities of meaningful connections with people living with dementia and started a journey of education as student and then as teacher for patients, families, professional caregivers, clergy and other faith community leaders and hospice staff. Sarah was my first teacher and I have been learning and teaching ever since.
In the years since my powerful yet tender lesson from Sarah I have learned quite a bit about the scope of Alzheimer’s and dementia. I have learned about the different types of dementia, about the changes to the brain and behaviors over the course of the journey, about the medical and medication aspects of care, about the endless range of plans, decisions and choices to be made along the way, and about the strength and the exhaustion of caregiving. And as a hospice chaplain and church pastor I have learned to weave all of that together with the comfort and peace of spirituality.
My purpose and goal with this website, and my forthcoming book-‘Always with You’ (Pilgrim Press 2025), is to share these learnings with you—with pastors and congregations, with caregivers, with anyone who wants to know how to continue to add quality of life for a loved one living with Alzheimer’s/dementia.
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