As I reflect on my 18 years of hospice chaplaincy, I remember the privilege of entering the lives of those living with dementia. Let me invite you to journey back in time to when I first started chaplaincy. After orientation at my new hospice, it was off to a long-term care facility for my new job as hospice chaplain.
I entered the facility, met the owners and got my bearings on what I would be doing for the next several hours. One thing orientation did not prepare me for was how to interact with those living with dementia. The fact was I had no idea. All the people skills acquired through 25 years of pastoral ministry proved inadequate for this new work.
What do you do when you enter a resident’s room to see her in bed, head on her pillow arms stretched upward reaching for that which was not there (at least to my eye). She was so intently focused on her task that there was no response to my calling her name. I had never seen this before and was totally without a clue as to what to do. I watched her reach, but never grasp, eyes on something only she could see. It seemed like a private moment so I gently prayed and went to the next room.
This resident did not speak, but he seemed aware of my presence by his disabling stare. Yes, I felt discomfort at the stare without any further communication. What was I to do? Out of a sense of my own uncomfortability, I offered prayer and went to the next resident, then the next, then the next. Having completed my rounds, I felt like a total failure. “You better figure this out” I said to myself. And, I did.
Collaboration with other chaplains and reading what I could find on communicating with people living with dementia were starting points for me. Trial and error followed, then some measure of success at communicating and then a response. One might think that success for a chaplain is to communicate deep, meaningful spiritual truth. On the surface, that sounds really good. In reality, you have to reach into the dense fog of dementia that so occludes the brain cells that the synapses are clogged with amyloid protein goop (excuse the non-medical term), and the nerve endings are twisted and hardly function. However, it is my firm conviction that God so impacts a person’s life that while end-stage dementia debilitates the person, it does not steal the soul.
It is Christmas time as I write this. The movie, Home Alone, is a favorite of mine. It’s a silly story for sure. However, it’s the music, the theme orchestration that grips my heart. The piece is titled, “Somewhere in My Memories”. How fitting. Those of us who do not live with dementia grow nostalgic with the family events and remember those who are no longer with us. Somewhere in our memories we recall the closeness, the closeness of relationships, the hopes, the dreams, the joy of seeing our young ones open their presents. It warms our hearts. Somewhere in the memories of those living with dementia are joys as well. They just can’t remember them. Well, perhaps they can, at least for a moment or two. The Dementia Care Protocol is our guide through the fog.
There was a lady with end-stage dementia I visited in that facility mentioned above who went from some cognition to nearly none over the time I saw her. Now, it appeared she was non-verbal. There was no movement, no response at all. It was Christmastime then, so I sang Christmas hymns and even Ava Maria to respect her Catholic faith. No response. Should I, could I sing a kid’s song, “Santa Clause Is Coming to Town”? I did. My first observation was her shoulder seemed to move to the rhythm of the song, and then her eyes opened and connected with mine, then a smile! I found her, or did she find me? Either way, she surfaced. She had what we call an awakening. I sang, shared affirmations of her worth as a person, and a brief prayer before she left and disappeared into the fog of her dementia. But, for those moments, she knew she was loved by God, a truth that was planted somewhere in her memories.
Somewhere in my mem'ry
Christmas joys all around me
Living in my mem'ry
All of the music
All of the magic
All of the fam'ly home here with me*
We don’t know what a person living with dementia thinks when they retreat back into the dense, dense fog of dementia, but I choose to believe that upon hearing affirmations of their worth and a brief prayer, something spiritual occurs. In Psalm 88:12 (KJV) we read, “Shall thy wonders be known in the dark? and thy righteousness in the land of forgetfulness?” Hmm, the dark/the land of forgetfulness…the land of dementia.
In the course of my work with those living with dementia, it has been my privilege to search for souls in the dark, in the land of forgetfulness and find them. So, as I reflect on the theme of Home Alone, I grow nostalgic and tearful knowing that perhaps for just a few moments I was able to return Christmas joys, all the music, all the magic of this wonderful season. “Thank you, Lord, for allowing me to do this.”
*Written by: John T. Williams, Leslie Bricusse
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