Stories of Dementia: Helen
As a care professional in Assisted Living, I'm proud to share these stories. The names are fictitious. The stories are true.
Helen was crying into her hands and slumped down into her wheelchair. Sundowning. I knelt beside her, offered my hand, and waited to meet her watery eyes. "I don't know where she is," she sobbed. "Who are you looking for, Helen?" I replied though I knew the routined response that would follow. "My mom." Helen, in her early 90's, had been living with Alzheimer's for many years and was frequently distraught about not knowing where her loved ones were - even those who passed away many decades ago and even if she had seen her daughter earlier that afternoon.
Many people unfamiliar with dementia may respond with what they consider a compassionate correction - "I'm sorry, Helen, your mom is not with us anymore. Remember?" I've learned over the years that this version of compassion is ultimately a self-directed endeavor, and that what people living with dementia really desire is not an orientation to reality but rather that their reality is understood. "I'm sure she will be here soon, Helen. She's usually here around this time." A hint of relief now in her voice, "yes I think so." Helen's hand is interlocked with mine, positioned like two arm-wrestlers, thumbs overlapping and a gentle but firm grasp to secure our bond. I see my opening so I beam a smile at her and wait for her reciprocated expression before continuing, "Your hair looks nice - do you have a big date tonight?" She laughs - humor and levity are not simply conversational banter but tools now to gauge her emotional receptiveness - the grip of her angst loosened a bit more. "Helen, have you been outside today? It's beautiful tonight." We often call this "redirection" - done poorly it comes across as dismissiveness but done intently and graciously is a sort of jujitsu of emotions - not stopping their emotions but rather guiding its movement naturally to its next position.
Helen turns to look outside, and I can see that her mind is still not yet fully at ease. "Why don't we enjoy a little fresh air in the courtyard while we wait for your mom?" She agrees to the idea and straightens herself out in her wheelchair. The courtyard and outdoor spaces of a Memory Care community are often under utilized to help soothe and care for a person living with dementia. I key in the code to the door and escort Helen into the pathway for a meander around the yard. I stop frequently asking if she likes this spot or sees another, and then we eventually find our place to settle in. "Wow, look at that beautiful sunset," I encourage Helen. She looks up into the orange and red hues of the Texas sky, the clouds diffusing the evening lights, and she nearly gasps. "Oh that IS beautiful." I sit beside her, our hands still clasped, and I don't say another word. I recognize that when her mind is at ease, I don't need to fill the silence. Conversation may actually irritate the scene. In silence beneath the sunset, she is not obliged by dialogue but comforted in the quiet presence of another person. A few minutes later she is fully relaxed.
I know that this serenity will not last and that in a few hours her mind may be restless again, or even if she is able to sleep soundly now, tomorrow may be the same or harder. For caregivers the loop of soothsaying and redirection may seem pointless because of their unknown lengths of efficacy. But with dementia, the goal is not a breakthrough or reversal of fortune; it is a moment of success - one and then another and another. With most ailments of the body, the goal is clear - to be rid of the pain - and so the path to recovery is usually linear: either backward or forward, from or toward the end goal. Dementia is non-linear and therein very frustrating. Its relief is not a destination; its relief is the manner of the journey. You cannot measure success by how much ground you covered but rather in how well you covered the ground.
A few weeks later, I held Helen's hand again. This time I was kneeling beside her hospital bed while I waited to speak with the hospice nurse who was on her way to visit with her. Helen didn't have her eyes opened anymore, but she could still communicate pretty clearly. When I had first entered her room, sensing the presence of another person, she pleaded, "help me. Help me." Now with one hand grasping her hand and the other caressing the side of her face, I received her request. "How can I help you, Helen?" She didn't know who I was, and I'm certain she didn't have any memory of the sunset we enjoyed a few weeks prior, but I like to think that the feeling of comfort in our practiced hand holding was familiar to her. In my years of serving seniors, I had grown accustomed to some of our residents repeating things over and over again, but this was the first time an endless loop provided an epiphany for me. Helen only said three words again and again and again - the final words I would hear her speak, "I love you."
The only thing I could think of to do was to reciprocate, "I love you too." After leaving her room many moments later, I thought - well, she didn't really ask for help. In reflection, I see that she had indeed required the help of another person in that moment. Helen's final care need was the opportunity to give something of herself - the most basic and essential human gift - her expression of love. She may not have known who was kneeling beside her that morning or whose hand she held, but through the fog of dementia and in the final day of her life she had, yet again, found a moment of success.
If you are caring for a loved with with dementia, do not despair in the struggles of the journey. Be intent, rather, to finding moments of success. You are not failing. You simply need to redefine what success looks like. For those who do not have dementia, our emotional needs can be excruciatingly complex and thus much harder to be met. People living with dementia are not as beholden to those same complexities. Most times when we interpret that they have lost their way, they don't actually want you to point them toward a destination but rather for you simply to join their journey.
Helen, I'll bet you have some spectacular views of the sunset now. P.S. I love you too.