Dr. Cate, Dementia Coach has been on a bit of a sabbatical, in the Caribbean. It has been life-changing in many ways. The deficit of internet, the influx of foreign culture, new languages, and the rigors of some tough sailing days have taken precedence. It has, in many ways, been an out-of-my-world experience with a total immersion in living moment by moment. After six years in the academic environment coupled with four years in a fast-based memory care admissions role, I have been thrust into a very physical and survival-based present. One that has been far from any idea of my personal comfort zone.
In reality, my day is often exactly like the day of an individual with dementia. I have limited sailing experience, the guide books are often out of date, and I am constantly feeling uncomfortable. Just about the time I start feeling comfortable, we move to a new place. Sometimes this place is pleasant, sometimes it is not.
There are several glaring examples of how this life magnifies my dementia experience and commitment to quality care. This past May we journeyed from the slightly familiar and friendly environs of the Bahamas through the Windward Passage to Ile a Vache, Haiti. Here my French language education was put to the test in understanding the local Creole. Many times my French was sufficient for understanding and communicating. In those times when I could not understand what was being asked, I felt much like our loved ones and clients with dementia. The advantage I have is my ability to revert to basic validation techniques. Because of my years of work in long- term care, my go-to response is a positive affirmation, in the case of Haiti, it was “Oui, oui.” Keep in mind that this response doesn’t necessarily mean I understand, but it does communicate willingness and buys me some time to hear a word or see an expression that I can utilize.
As those of us in eldercare know, body language and expression are key to communication. In the case of the Ile a Vache boat attendants, I soon learned that “No, no,” was often more appropriate since their boat-side visits were always requests for goods or work. We employed one “volunteer”, Pepe, to lead us to Madame Bernard’s market, a four mile journey through Haitian culture. We were very grateful for his English skills and cultural aptitude when we reached the market. From neighing goats, live chickens held upside down, piles of unknown fruits and nuts, people who looked, walked, and behaved differently—there was severe sensory overload. I wished I could have been invisible so I could simply stop and take it all in and try to process the input. Some sights were astonishing. I had to consciously remind myself to maintain a poker face so that my foreign face did not judge.
My response was similar to the instinct of an individual with dementia who stops in the center of an environment, refusing to move. “Let me try to make sense of this.” Often, they too have inappropriate affect. We hung onto Pepe’s heels tightly, much as our loved ones or clients hang onto our steps. “If I lose sight of you, I don’t know if I can cope. Please stay close.”
This same validation strategy was re-enforced when we reached the Spanish-speaking regions of Dominican Republic and Puerto Rico. My Spanish is very newly learned, and elementary, so I often feel overwhelmed by the language demands. In the Dominican Republic (DR), we usually had a bi-lingual guide who mitigated the stress. As Fernando and Ricco negotiated prices I listened with the same astonishment and confusion as an individual with dementia. If we were in the central open-air market, the sensory input was over-powering. No goats or upside down chickens here, but many uniformed men with automatic weapons surrounding the market which created a level of tension.Perhaps the same level of tension we would see when a school of medical students in white coats would tour a memory community.
The DR market was abundant with amazing colors and scents of produce, spices, coffee, nuts. It made us salivate and crave and marvel. We were intrigued and had a tendency to linger with our guide encouraging us along. The same response our memory clients had when we expose them to children, a local farmer’s market, a restaurant experience.
Rosetta Stone™ had not yet prepared me for market day. I could not imagine negotiating the sights and sounds without a guide. In purchasing produce, I needed Fernando to identify the vegetable, obtain the price, and communicate the amount. As caregivers we translate peculiarities of the world for our loved ones. Over time, the translations are more advanced as the vocabulary of life slips away.
As we walked back to the harbor with Fernando, a few locals said something to me. Fernando was a bit ahead, so I simply responded with a “Buenos Dias”. Hearing me, Fernando said I might want to ignore them as they had been propositioning me!
How often do we encounter an inappropriate response in providing memory care? I comfort myself that if I have memory loss, I probably will always err on the side of a positive response as opposed to a negative one despite how inappropriate the response may be. As caregivers we protect our clients and loved ones from dangers, we are the guides that know the culture. We accept their response as part of their state of mind.
Leaving the DR we traversed the Mona Passage, a notorious body of water that I had heard about via a family member of one of my memory care communities. Her husband’s past was as a boat captain and many fine memories included the cruising life. One of her favorite sailing memories of Captain was of his consideration of her seasickness in the Mona Passage. I had tucked this memory away for our future, having great respect and some trepidation of the Mona . . . We waited for an ideal weather window before making the crossing from the DR to Puerto Rico. It was uneventful but it was full of acknowledgment of the Captain’s legacy of generosity.
As we went ashore at Boqueron, Puerto Rico, we had a visceral response of relief. We immediately saw US influence affirmed. It was a relief to see dogs on leashes who were well-fed, a phenomenon not present in the Bahamas, Haiti or the DR. It was humorous and a bit embarrassing to see obese people. Clearly we did not land looking for either perspective. But these two images struck us right away.
How often does a person with dementia emote a visceral response to an environment or situation that seems common and unremarkable to us?
Unless you have walked on the wild side, you cannot see the mundane as phenomenal.
Coming from the countries west and north, these things were stop-in-your-tracks notable. From a person with dementia’s cognitive space, many environments and situations seem profound.
On our first trips to Walmart and real grocery stores I had reinforcement on the power of basic validation. As I shopped for clothing staples I was considering price and value as a Spanish speaking woman joined me at the same rack. She began to speak in rapid Spanish, expressing some facial angst, gesturing. For an instant I was torn between telling her “No hablo espanol”, and interrupting her. Instead I matched her expression, mimicked her gestures just as we learned from Validation™ training, and empathized with “Si, si”. Which seemed acceptable. Then I departed quickly for fear she would ask a question, and I would have to admit my Spanish language ignorance. It was a moment or two of empathic validation. Whether I understood completely was irrelevant. What was important was the sharing of the moment. That is the key to quality memory care. Reinforced in a Puerto Rican Walmart.
On this same trip, I needed to “use the loo,” which was surely not the phrase to produce directions in Mayaguez :}. But then I remembered, “Donde esta quata de banos?” This was not Rosetta knowledge. This came from years ago working with an adult day client named Rosa, who was Puerto Rican. She remembered very little English. So, as staff, we used our limited Spanish to work with Rosa. Rosa taught us key phrases and questions like “where is the rest room?” Rosa was a happy and totally engaged client who would correct our Spanish and laugh at our humble attempts. It was the empathy and validation that carried our relationship.
Years later I worked in Rosa’s care home as a recreation leader. Here the staff spoke mainly Hindi. Rosa and I produced a communication board to assist them in those key phrase and words vital to her quality of life. Working in her home reinforced the value of the adult day center in maintaining quality of life.
Cruising in cultures that differ greatly from my US culture has allowed me to spend a bit of time walking in the shoes of an individual with dementia. All of my research and hands-on experience of dementia has been better defined in this journey.
One take-home message for U.S. care providers, memory care excels in the U.S. compared to the Caribbean. Even Puerto Rico has very limited eldercare options, with little to no memory care component. The rate of dementia is not significantly lower, just the response.
As Dr. Cate, Dementia Coach I continue to cruise the Caribbean immersing myself in culture, translating experience and research to improve quality of life for those with memory loss. I happily return to the US for speaking and training. I can be reached at firstname.lastname@example.org.