Learning To Be “Good Enough”: MemoryWorks® at CaringKind
By Maria Mursch, LMSW
former Manager of the Early Stage Center
Geri Taylor, RN, MPH
Early Stage Center participant
The Harry and Jeanette Weinberg Early Stage Center at CaringKind in New York City was designed to meet the needs of people who have been diagnosed with Mild Cognitive Impairment, early Alzheimer’s disease, or a related dementia. The Early Stage Center serves people who are interested in meeting others who have similar experiences, and those who are learning to adjust to their diagnosis and changes over time. Geri Taylor has been a participant at the Early Stage Center since early 2014, and she was featured in The New York Times article “Fraying at the Edges” in the spring of 2016.
Geri is a person living with early stage Alzheimer’s disease. While she will still likely one day rely on a caregiver to assist her with daily tasks, for now she is determined to do what she can for herself. When Geri first noticed changes with her cognition, she sought out a diagnosis and took steps to become more active. Geri has utilized her background in public health, her inner strength, and many other qualities to support others living with the diagnosis. She also receives support in return from her peers who are experiencing similar changes. She is a passionate advocate for people with early stage Alzheimer’s disease, and has chosen this forum to share her experience with CaringKind’s MemoryWorks® program.
MemoryWorks is one of several core programs at the Early Stage Center. The primary goal of this weekly, professionally facilitated group is for participants to socialize and learn from others who have similar cognitive impairments, while working together on stimulating brain exercises including word puzzles, spelling games, and trivia questions. MemoryWorks supports participants in feeling stimulated, successful, and provides a sense of camaraderie and cohesiveness. Participants report feeling a sense of relatedness to the others in the room who are sharing similar challenges. Many participants also report feeling better about themselves when their experiences are normalized and shared with one another. Here is Geri’s account of what she has learned from the group, in her own words:
“After attending the MemoryWorks sessions for 3-4 years as my Alzheimer’s gets a stronger hold on my word-finding abilities, I have gained personal compensatory strategies to aid my conversational participation. Most importantly, the MemoryWorks exercises give me greater confidence in conversation and independence.
I have increased emotional strength and acceptance of deficits, and I have embraced a new conversation style. For example: simpler sentences; fewer descriptive words (adjectives); fewer explanations of my thinking background. In essence, the MemoryWorks activities reinforce the use of habitual word and expression choices. Its best outcome, as I see it, is pulling to the foreground alternate word choices frequently passed over. Hence, my appreciation for the “good enough” word choice as it maintains the fluidity of the conversation. And that fluidity allows the conversation to continue and I remain a participant. Alzheimer’s and my word finding symptoms do not become the topics or a distraction.
What I learned:
- Being in communication/conversation with others is most important not that the thought is most properly expressed.
- Good enough is “good enough.” The perfect word is not as important as the intention to communicate feelings or thoughts.
- Presence, body language and facial expressions are extremely important.
- Faltering language is not the end of the conversation. Talking around and non-verbal expression is often just as effective as an exquisite sentence.
You and your intelligence are not exclusively packaged in your spoken communication.
In addition to learning this from interacting with family and friends, I feel this adaptation has been accelerated and enhanced by sitting with my Alzheimer’s peers. Together, we have gained confidence by seeing our peers’ intelligence and wonderful intention and we gain confidence to whether our mistakes, word choices, stuttering, “ummmm” and even the dreaded “blank” (The “dreaded blank” occurs when we are so fixated on getting a particular word, the whole point to be expressed is lost. “BLANK!” Recovery is often a laugh. This usually inspires someone to jump in. Let them or take it back graciously).
However, we do not withdraw but rather we stay in the game. More importantly, we take this with us into our daily lives.
It has been my pleasure to lead Geri’s MemoryWorks group and to support all of our early stage clients. As Geri so eloquently puts it, many of our participants learn how to accept what is “good enough” in order to participate actively in their lives while living with a cognitive impairment. For more information about the Early Stage Center, please visit www.caringkindnyc.org/earlystagecenter or call the CaringKind 24-hour Helpline at 646-744-2900.