A few weeks ago during a lecture I was giving on the spiritual care of hospice and palliative patients, an audience member asked me how I would suggest providing for the spiritual needs of a patient with end-stage dementia, such as Alzheimer's disease. His question was quite relevant since Alzheimer's disease causes severe impairment in the functioning of the brain and results in loss of memory, changes in mood and personality and ultimately, an inability to communicate and perform the basic activities of daily living. It seems unlikely that such a patient could participate in or benefit from what we typically think of as "spiritual care."
As I considered this question, a story came to my mind of a patient I once cared for named Maria:
When I was first assigned to make rounds on Maria, a nursing home patient who was bedbound and unable to move or speak due to Alzheimer's disease, I dreaded having to see her. My favorite part of interacting with patients was being able to connect with them and listen to their stories, and I assumed it would be impossible to form any kind of meaningful relationship with someone in the final stages of Alzheimer's.
I found Maria in her hospital bed in the nursing home, lying on her right side and curled up into fetal position. Her eyes were closed, and she did not respond to my voice or to my touch when I examined her. I knew from the nursing report that this was her usual condition -- she was breathing on her own and she would take in food and water when it was offered to her, but that was the full extent of her functioning.
I finished my exam in just a few minutes, since I couldn't ask her any questions or converse with her. But I knew that the shortest length of visit I could bill for was 15 minutes. It would feel dishonest to me to bill for that amount of time and not really spend it with the patient, so I decided to sit with Maria in her room for the entire 15 minutes. Besides, I reasoned, Maria deserved to have that time and attention just as much as any other patient.
Thus began my visits with Maria. After examining her I would sit in a chair next to the bed, read her chart and write my note, watching the minutes tick away. But one day while I was listening to Maria's heart with my stethoscope, an orderly dropped a tray in the hallway outside her door. With the loud crash, Maria startled and I heard her heart rate increase while her breathing became more rapid and her eyes opened wide in fear. I quickly grabbed her hands and leaned over to talk to her, saying, "It's okay, Maria. You're safe. Nothing is going to hurt you." As she gradually relaxed and the look of terror left her face, I realized that some part of Maria was capable of responding to my voice.
From then on I began talking to Maria every time I saw her, reading her chart aloud to her, commenting on the food she had eaten that day and telling her when the nurse noted that her son, who lived in another state, had called to ask about her. I began to look forward to these unusual visits, because I found it very peaceful to be in Maria's presence. During those 15 minutes I could simply sit and be with her, without expectations or pressure.
One day I noticed a family photograph on Maria's dresser and picked it up to look more closely at the people in the image. In the center I recognized a much younger and healthier Maria, wearing a beautiful blue dress. She was seated next to a handsome gentleman, who must have been her husband, and surrounded by younger adults and children of all ages. She was holding a baby girl on her lap, wearing a white christening gown.
Excited by this new finding I began describing the picture to Maria, including her blue dress, the newly-christened baby and the man I thought might be her son Carlos, who called the nursing home every week to check on her. As I reached to place the photograph back on the dresser, I glanced over at Maria to see tears trickling down her face. Instantly I bent down to embrace her frail body, as I knew for certain that I had found Maria -- from inside the tangled cells and synapses of her brain I had made a real connection with her soul.
I saw Maria only a few more times before she died. On those last visits I was able to speak much more directly to her and let her know that she was loved, that I understood how difficult this part of her life must be, that she was free to go whenever the time was right for her. When I returned to that nursing home after her death, I felt the pain of loss as I passed by her empty room. I would miss Maria because I knew her -- I had found her there and she, in a way, had found me too.
Maria fulfilled a profound purpose in those last few months of her life -- she taught me that the soul cannot be diminished by any illness or injury that damages the physical body. She taught me to respect the dignity and wholeness of every life, regardless of the level of functioning of the mind and brain. She taught me to be steadfast in my search to connect with the soul of every single patient I cared for and to be courageous in teaching others to do so, as well.
And so my answer for how to provide spiritual care to patients with dementia is simple: Recognize and believe that every patient has an intact soul, be willing to give your time and presence to that person, and be authentic in your expression of lovingkindness and concern. We are all connected on one level or another and no matter how tangled or difficult the communication might be, it is possible, with patience and determination, to "find Maria," wherever we encounter her.
For more by Karen M. Wyatt, M.D., click here.
For more on Alzheimer's, click here.