Sometimes we learn the most important lessons from the seemingly least likely teacher. I’m glad you are here and hope that you will find the insights and information you are seeking! This is a passion and a project that actually began in late fall 2003. I was a new seminary graduate and began my ministry as a Hospice Chaplain providing spiritual support to those at the end of their life and to their loved ones. There was so much that four years at Andover Newton Theological School had prepared me for yet so much of what I learned and then shared with others came from those I was privileged to be with in their closing months and moments.

     Walking alongside people at tender, fragile times, bearing witness to their fears, their hopes, their
growing acceptance or resignation, was a privilege. Offering a safe place to cry, to scream in anger at a disease, to collapse from trying to carry the burdens of ‘too much,’ and to share the fears and worries about the future was a comforting gift to share. Hearing the stories of their accomplishments and achievements, their failures and regrets, and lifting those experiences in prayers of thanksgiving or lament was a ministry of grace. Offering education and working with them through complex choices, decisions and plans for care choices, nursing facility placement, a memorial service and burial, and other end-of-life decisions, was a ministry of respect and presence.

     What I was not prepared for was how to minister to those with Alzheimer’s/dementia, especially
those who were at the end of the life in the final stages of the disease. Other hospice chaplains had the same inexperience. As much as we knew this was a beloved child of God we did not know how to be present with them. Our visits, most often in dementia care units of a nursing home, were awkward, empty and brief. We did not know how to connect. And these were the visits that their families had approved of, although often our presence was declined as not being necessary since they no longer understood Scripture or remembered church. While this was not true, we did not have a way to refute their objections.

                                                         Sarah, My First Teacher

     Just over a year into my hospice ministry I was blessed to meet my first teacher who taught me
just how to connect with those who live with Alzheimer’s, how to minister to those who live with dementia. Sarah was at the very end stage of Alzheimer’s disease and had lost her ability for clear and coherent speech as well as the ability to walk, eat or dress herself. Most of her time was spent sitting silently and still in the unit dayroom, withdrawn from all the noise and activity around her. Sarah did not have any family members, just a legal guardian to take care of her needs. Unfortunately, very little was known of her life story. Sarah had been born in 1927 in Poland and was Jewish. On her left forearm a six-digit Nazi camp identification number was still quite visible. No other information was available to me but that turned out to be just enough. My visit this particular day happened to be on the second day of Hanukkah. As always I was clueless on how to make this a meaning visit for her. Noticing a plastic dollar store menorah way atop a cabinet out of reach and nearly out of sight, I took it down and placed it on her lap hoping for at the appearance of connecting with her. 

     Completely unexpected and overwhelmingly surprising, 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!"

     I quickly realized that what I and the staff saw as a cheap plastic menorah was in that moment
something entirely different for Sarah. 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. And now it is a privilege to share it.