It's time to row
Kitty Fallon, PhD, April 2024
This is a tribute to cherished moments spent with Lilly, a kind, funny, brilliant, dignified, and deeply loving guide in the final months of her life. This honors also the loved ones, friends, staff who made up the village and who provided care, respect, and were witnesses to the final chapter of her extraordinary life. Ultimately, this tribute serves as an inspiring lesson for us all. I invite you to see yourself within each person in this story. If you were in any of these roles, for what might you wish? What might you need as you experience yourself, witness, or serve someone at the end of life? How could we respond as a community to enrich the lives of people experiencing Alzheimer's, caring for them, and those who loved them long before their final moments?
The days within this story were long after the anguishing early years of Alzheimer's, illuminating the frightening journey to come. These were experiences mostly not by who were closest to Lilly, who grieved repeatedly small and large losses as parts of her became harder to recognize. These moments were shared by fellow residents and staff of one unit in a nursing home that became her last address. We met and embraced Lilly as she was, many of her neighbors on similar journeys. In that light, nevertheless she became a wise guide. She taught us that for those experiencing Alzheimer's and cognitive decline, all the mysterious deficiencies claimed by brain deterioration will never erase each person's divine essence and elegant uniqueness. Lilly lived with quiet courage, determination, and humor, always inviting us to connect with her not entirely through shared realities and language but through love, ever expressed by her radiant eyes and smile.
I was taught once the memories of people experiencing Alzheimer's or other forms of dementia are like an old-fashioned film reel that ultimately dissolves. Lilly’s story challenges that assumption. In my observations, memories are like files stored in a lifetime supply of file cabinets with an equal number of keys. The memories remain accessible but with more difficulty finding the matching key. Lilly inspired us to trust her brilliance was still there and to find it hidden in the confusion when her key did not match the corresponding cabinet of memories.
Lilly was a woman on the move, passionate about walking and creating days with purpose and tasks to be done, even when that was more risky to her safety. She preferred staying busy, fabricating things with her hands and would often create imaginary treasures. She traveled back-and-forth between our world and ones unseen to us, in which she would be gardening, creating needlepoint or stencil art, tending very carefully perhaps to a bird egg in her hand, or sampling treasured recipes which often looked like putting things in her mouth that in our world were not edible. If we paid attention, she would tell us in a unique language about her adventures. To understand Lilly required looking past asynchronous and unintelligible words and sounds and hearing her enthusiasm, persistence, sometimes exasperation, and her passion for creating. Lilly expressed herself fluently in her facial expressions and her sighs, which often conveyed her excellent sense of humor. Regularly she greeted us by holding up her first two fingers in the peace sign. Just when you might count Lilly out as permanently absent from our shared reality, she perked up from the loveseat and answer one of the Jeopardy questions correctly. She responded to an offer for ice cream with, “Is the pope Catholic?”
Past, present, and future seemed to dissolve into Lilly's present moment. Once impeccably well read, language and numbers were difficult for her to understand and use. Cultural customs like table etiquette she held only loosely. How shall we spend our present moments? Do we try and rigidly attempt to expect conformity to old rules, or do we have an opportunity to transcend the frames we used to use to organize our worlds? Do we learn from our loved ones, once fluent in cultural norms, or immerse ourselves in the present moment? Lilly's present moments left ample time for daydreaming travels into worlds we could not share. She lingered on tasks we might find of no benefit but she found deeply satisfying and important. She was not rushing to get to a new moment in the future, nor dwelling on past worries. What was she teaching us about living in the now?
In our small community, residents outnumbered staff. We often refer to one another as family, despite being apparently brought randomly together by circumstances and perhaps destiny. Many of us took seriously keeping a close eye on Lilly. With her whimsical eyes and ever generous smile, quickly she became a valued member of our eclectic family, given nicknames like Lilly Cheeks or Sweet Lilly. She was included, not isolated. Gently, we would redirect her if she was placing something other than a meal in her mouth. One loyal and devoted companion saw his own mother in her and would sit by her side after meals until she moved onto her next adventure in the living room or retired for the day. I spotted him on her last day in the living room. As she rested on the loveseat, he paused and looked down on her with a tender and caring smile, staying long enough perhaps for a prayer for her safekeeping. Lilly inspired us to become her guardian angels. In this way, she was giving us the opportunity to extend beyond ourselves and experience the ways in which we are interconnected and interdependent.
Something shifted that Sunday. Lilly was so white and her skin was cold. I held her hand, and she remarked, “Your hand is so warm.” I looked her in the eyes and asked her if she thought she was near the end. Lilly looked back, nodding her head, and said yes. I asked if there was anything else she needed to do. She shook her head, saying “I’ve done everything I've needed to do.” She put one hand under mine and covered mine with her other hand. For several minutes, she quietly looked at our hands gently rubbing them. I said, “I’m right here with you.” She looked up with her sparkling blue eyes, smiling, and said, “I can feel it.” In that moment, she taught me that someone can appear so far away and inaccessible, but there is a deeper wisdom and knowing that transcends Alzheimer's and with which she was able to connect and express.
A couple of weeks after this moment, not knowing Lilly had already entered her final decline, I sat beside her as she was trying to stand. I asked her where she was going. Gazing into my eyes with a whimsical smile, she started to say, "I have to go.” Instead, Lilly said, "I have to row." Without missing a beat, she began singing Row, Row, Row Your Boat, something that had been a popular song on road trips with her family. Moments later, her dying process accelerated into its culminating phase.
I sat with Lilly as her daughter Ruth flew across country to be here in time. Her children, granddaughters, sister, and old friends called throughout the day, filling the room with palpable love expressed in memories of walks on the beach collecting seashells, reading, singing, laughing. Her legacy of love, threaded intentionally with her soulmate Paul, poured through each message, weaving together a blanket of light that gently rested atop her tiny frame, keeping her warm on her final journey.
Her son Tim and Ruth shared their mom's favorite music, and we crafted a playlist, a soundtrack of her life. It played softly from an iPad resting gently on the pillow above her head, an a eclectic mix of barbershop quartet, The Ink Spots, church music, and Anne Murray. Her room was decorated with a lifetime in pictures, seashells and stones from the beach, a photo of Lilly’s beloved Paul looking down on her from the wall beside her head, and a couple of sweetly upholstered chairs, missing their accent pieces left back at an home she visited only in her mind.
We die the way we live and on a unique pace. Lilly taught us patience and trust that a larger process we cannot see or understand was at work; and, in the end, all would be well. She gave us an opportunity to pause our scheduled busy lives, sit in the now and find the beauty in even deeply sad moments. She gave her daughter the experience of immersing herself into our extended family on the floor and be cared for just as tenderly as her mother. Lilly gave her daughter and son a chance to come together and support one another in her final hours.
Perhaps she lingered here longer, stretching the present to last as long as possible, inviting us to soak up the wisdom to be gleaned from this exasperatingly brutal disease and from the sacred vigil of tending to a friend, mother, and fellow traveler as she bids farewell to this incarnation and returns home. Ruth welcomed Lilly's floor family to come in to check on her, sit vigil with her, say prayers, including her devoted guardian angel who sat peacefully holding her hand and gazing out the window. Another sweet soul, who shared the same beguiling illness, stepped in when Ruth felt in distress, asked how he could help, and quietly sat next to Ruth while she cried.
Staff transcended their roles. Staff shifted gears the night Lilly's daughter arrived late in the evening, locating a spare bed to move into her mom's room so her daughter could sleep by her mom's side. One gentle giant knelt, held Lilly's shoulders, and prayed in his birth language the Muslim prayer for the dying. Another came in on her day off to say her goodbyes prior to leaving for vacation. Recognizing she was wet, this angel on her own time simply changed her. Another connected soul while traveling overseas for a family funeral, called her colleagues on the floor to check on how Lilly was doing. Finally, after commenting that despite decades on the job, saying goodbye never got easier, one nursing assistant composed his grief as best he could to provide Lilly the final beautiful act of bathing Lilly's body after she passed.
In the midst of all the research to cure the spectrum of Alzheimer's and dementia, the policies and procedures of caring for people unable to live independently, the challenges and tedium of daily life within a deteriorating physical body and mind, the river running through all this is love. Love is finding the brilliance in someone unable to access language and memories. Love is tending with dignity to someone who may not know your name, soaking in the love communicated in sparkling eyes and a limitless smile. Love is recognizing that we may be strangers, acquaintances or even loved ones, on some levels we are always family. Finally when it's time to row, love is letting go.