Breadcrumbs Through the Forest

An analogy of Alzheimer’s disease could be one of a forest being taken over by undergrowth. The clear paths that once existed neuron to neuron are being overtaken by plagues and tangles that make the cognitive journey difficult. When the thoughts are no longer connecting to guarantee recognition of loved ones and tasks of daily living, more care providers are added. These are folks who don’t know the individual at all but hopefully understand the disease and its impact. How do they get to know the “resident”, “patient”, or “client”? They need a trail of breadcrumbs through the undergrowth.

That’s where family and social histories are invaluable. When my father-in-law entered the nursing home, I wrote a simple one-page letter to the caregivers that we posted above his nightstand. It gave them a few trails to pursue when they interacted with him. Most of all, it gave every caregiver an understanding of Dad as an individual. A father of ten, grandfather of 35, a bomber pilot in WW II, an engineer and electronic tinker—a man whose behaviors were not a reflection of his personality or his past, but of his disease. As a family we were comforted by the knowledge that we had a presence in his care even in the middle of the night or early morning when we were not there.

As a recreation therapist, I sought such information from families and caregivers. Each resident chart in the nursing home and in the assisted living had some reference to a Social History Assessment, but rarely was it complete. It was buried in the Social Work section or in the recreation department’s files, not accessible to the day-to-day hands-on caregivers. Little has been researched about the value of this form that is so often neglected. But much is written about person-centered, relationship-centered, and integrity-promoting care. It’s only the breadcrumbs through the forest that really provide the clues to offer such individualized care.

Pralines. An excellent example. When I started on the Dementia Special Care Unit, one of the residents was not engaging in activities. She was either asleep or wandering. The winning clue that helped me establish a relationship with her was her Louisiana childhood. Mention of Louisiana would wake her, bring a smile and a hand outreached to me. As I utilized this breadcrumb, more engagement came. Prey-lines—I said one day—with a northern twist. She verbally corrected me—Prah-lines. As she said it, her posture adjusted to show just how important this nuance was to a lady from Louisiana. These breadcrumbs allowed us a connection and engaged her at a level not seen for over a year.

Neshume-le. She was a resident of a board and care home in her later stages of Alzheimer’s disease. She had a hanky that she would repeatedly use in a maternal cat bath to herself and to those close to her. Engaging her in recreation that involved folks still cooking, playing, singing was a challenge. But I would engage her by sitting or standing close and maintaining physical touch. She would use her hanky and call me “neshume-le”. The home’s owner had no idea what it meant, there was no family. But I responded to this breadcrumb intuitively. I encouraged the provider to allow her to have a baby doll to mother. Years later I read the meaning of the word, “little precious soul.” Such a gift she was giving me! We had walked the breadcrumb path each week, based on very few clues.

Notre Dame. He came as a leader in his late middle stage of Alzheimer’s. He was an organizer of residents, he would stand beside me in a group, helping. His peers were not always happy with his leadership. The social worker gave me the clue—he had been a football player for Notre Dame. After than, any conversation about the team, his role, the historic run—-would bring cooperation, a sparkling smile with eye contact, a relaxation of his posture. Our connection worked so well that I was often his caregiver in personal care when he was resistant to his aide.

There was a very overgrown forest in each of these instances. Some of the response was probably based on indefinable connections made. But it was the history that gave caregivers the clues to navigate through the woods.

Breadcrumbs. Perishable and seemingly unsubstantial—yet enough to lead one through the forest.

Person-centered care requires history sharing.

Author: Cate
Passionate about dementia care and quality of life throughout the last days of life----sums up Cate McCarty, Dr. Cate, Dementia Coach. With close to forty years of long-term care experience in nursing and recreation, a Master's in Thanatology and a PhD in Aging Studies, Dr. Cate seizes every opportunity to translate research into quality of life for individuals with dementia and all of us who have the honor to "rub elbows" with them.

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