By Rick Rader, MD
Patti Wade knew we needed to understand dementia and how it manifests itself in our already vulnerable population. How we have to modify and address our own behaviors, the environment, stressors, accommodations and the way we communicate and react.
Pablo Picasso, who knew a thing or two about being an artist, mused, “God is really only another artist. He invented the giraffe, the elephant and the cat. He has no real style. He just goes on trying other things.”
To Miranda Powell he could have stopped with the cat; he needn’t have tried other things. Miranda loved her cats. She surrounded herself with her cats, her stuffed cats. Miranda was a woman with Down syndrome and Alzheimer’s disease, supported by my agency, the Orange Grove Center. I first learned about Miranda from my colleague Patti Wade. Patti is the Coordinator of our Supported Living department and a veteran of the “DSP wars.” DSPs are Direct Support Professionals, the front line trench fighters who provide the hands-on care that our folks require, need and deserve. My reference to the “DSP Wars” is my own perspective of how arduous, conflicting and complex being a DSP has become. Rules, regulations, restrictions, protocols, documentation and more rules, regulations, restrictions, protocols and documentation often cloud, confuse and confiscate the act of true caregiving. While they certainly are necessary (to run systems) and to protect (the systems), they assume that the DSP would be lost without them.
The “war” is the battle to adhere and comply with the rules, regulations, and not let them interfere with the hundreds of daily transactions that occur between the “individual” and the DSP (also “an individual”). So Patti knows the dance; has performed the dance, perfected the dance and now teaches the dance.
Patti is also what I would call “an organic visionary.” She knows when she is seeing something; something that demands action. This was made evident several years ago, when Patti was working in the trenches with a young man with Down syndrome. It was becoming obvious to Patti that “something was not quite right with John.” She was right; he was beginning to display the early signs of dementia. Patti learned many things from John; namely she (and “we, the field”) weren’t ready for what was happening to John and others with intellectual disabilities and signs of dementia. That she wasn’t ready was obvious to her. It was also obvious to her that she was frightened and scared. Frightened and scared because she knew he would not be the only individual to be challenged by this “double whammy.” She knew she had to do something, hence my label of her being “an organic visionary.”
While Patti isn’t a student of the great British detective Sherlock Holmes, she somehow came to the same conclusions about “observations” from him in “The Adventure of the Cardboard Box. ”
“Let me run over the principal steps. We approached the case, you remember, with an absolutely blank mind, which is always an advantage. We had formed no theories. We were simply there to observe and to draw inferences from our observations.”
Patti not only observed what was going on around her; she drew inferences from her observations. She knew something, something both definitive and decisive that had to be done. She relentlessly advocated and pushed for our agency to explore creating a dementia care program. Not just “care,” but comprehensive, collaborative and continuous care. Make that a “full tilt boogie” program of care. Patti knew we needed to understand dementia and how it manifests itself in our already vulnerable population. How we have to modify and address our own behaviors, the environment, stressors, accommodations and the way we communicate and react. We had to revisit the impact on families, colleagues, healthcare providers, behavioralists, program administrators and payors. Patti’s leadership and influence led us to formally adopt not only a new program, but a new paradigm about what it means to provide top-notch care when the outcome is so well known and immutable.
Orange Grove Center is a member of the National Task Group (NTG) on Dementia and Intellectual Disabilities, the country’s most formidable and collaborative group addressing the growing problem of ID and dementia. We created a two day training program, established a permanent Virtual Dementia Tour center which replicates the sensory experience in dementia, an electronic newsletter (“Memory Matters”) providing updates on research in dementia (in junctions with both the NTG and the American Academy of Developmental Medicine and Dentistry) and recruited AmyJo Schamens an Orange Grove board certified behavioral analyst with expertise in geriatrics and dementia (who reinforces the reality of “us” needing to change our behavior, not “theirs.”)
So Miranda Powell loved her cats. She had a dozen of them arranged on her bed. While they were stuffed she knew them by name, by breed and by disposition. While Miranda was bed-ridden during the last year of her life, her cats provided comfort, solace and companionship on her own terms.
One of her DSP’s found a “stuffed cat” with realistic fur and gave it to Miranda as a gift (not sure what the regulations are about “gifts” but you can bet it probably had to be documented as to country of origin, and if it needed to be approved by either the FDA or the Underwriter’s Laboratory, or both). This cat was different to Miranda. It felt different, and she thoroughly enjoyed welcoming it to her feline family. Miranda had a eureka. The cat felt different from the others; perhaps she truly thought it was “more real.”
Miranda insisted that all her cats be fed twice a day and her dutiful DSP’s went to great lengths to set up bowls to feed the cats. Miranda watched from her bedroom window the twice-a-day ritual of the DSPs escorting her “pride” to the porch where they propped up the cats at the bowls. Miranda watched with great approval and contentment.
One day, Miranda “surmised” that the new cat, the one that felt “more real” that the others, was not moving around like a “real cat” should. She told her DSPs to insure that the new cat was getting enough food and perhaps needed some vitamins. Finally, one day, Miranda declared that the cat must be dead and needed to be buried.
The staff performed a respectful ceremony outside of Miranda’s window and dutifully buried the deceased cat on a hill with a marker stating, “Here lies Miranda’s cat.” For the rest of her life Miranda looked out of her window and took great pride and joy in knowing her “real” cat had been shown the proper respect and dignity that it deserved.
To the best of my knowledge, no one filed a “State mandated Incident Report” which is required for actions of staff misconduct (there certainly must be several rules that govern the burial of stuffed animals on private property). Thanks to Patti and her staff, there are rules and there are rules.