If we suppose that somebody with Alzheimer’s Dementia is “already gone” or “merely a body,” as I have heard some exasperated family members or caregivers say, then we will not be able to see how creative they can be. This creativity is an invitation to us to step out of our own ways of thinking or telling stories and see and hear them clearly, so that we can get in touch with their world. It is easier said than done when we don’t have a history with the person in front of us, and it also easier to do when we are in a personal rather than an institutional setting. That being said, we can open ourselves to the creativity of someone with dementia almost no matter what the circumstances are if we pause, slow down, and notice the messages that our body is sending us. We are not dealing with an inanimate thing when we visit someone with dementia. We might recognize the unique ways that their identity is presenting itself for us to perceive, and we might thereby enable ourselves to be recognized. In this moment of being present to each other, we might find that our indebtedness to each other. We are only truly human beings when we are together in human community with each other and our debt to each other comes from this belonging.
It was easier for me to understand this with my grandfather than at first in the clinical setting, because I could draw on the experiences I had with him over the course of my forty years of being loved by him. And so I could see the creativity that his loved enabled in me, my siblings, my mom and dad, my cousins and aunts and uncles. He loved generously and without any expectation of return. I can see how I am indebted to him even now as his memory lives on these words of appreciation. He would spontaneously sing on occasion, or would sing along with songs he loved. When I put “With Eagles Wings” on in my car as we drove around, he would sing along and say how much he appreciated the music. We would enjoy the moment of singing together, mutually recognizing the offering of time spent with each other. I would feel warm, open, and grounded in the car with him as we drove to a doctor’s appointment.
In my personal care or yours, in my grandfather’s home or in your family member’s home, seeing our loved ones with dementia as creative and connected to who they were in the past is easier. When we see someone in a memory care unit or an assisted living facility or a hospital, it takes more effort to see how they might be the creative person they once were. It may take more effort to disrupt the clinical routines of the place to provide them with space to emerge into the open social space that allows for mutual recognition to assert themselves as a person who wants to be seen, heard, and held. Our best chance to encourage this from them is to use all the sense faculties we can, to ask them about themselves or to use what we may know about their story from talking to a family member to elicit the expression of selfhood. Most often in my visits with persons with dementia, I have used photographs of family or activities that they once did or songs that they might know or experiences outdoors to call memory to mind. And a gentle hand on the lower arm or shoulder, if the person welcomes touch, can also invite the person to emerge.
The phrases, “she’s already gone” or “she’s merely a body” or “absent to the body and present to the Lord,” speak to something true about dementia too, and we shouldn’t judge them as wrong. They point to the horrible pain of grief that happens over a prolonged period of time in the case of dementia. In my opinion, this kind of grief is so agonizingly drawn out that many people dealing with it, for lack of a more skillful way to handle it, check out and shut off the pain. My sense of how to deal with prolonged and ambiguous grief in a more skillful way involves mindfully attending to the pain, noticing it and accepting it as it arises and falls away in experience, allowing it to feel intense and recognizing it won’t last forever, and then having compassion for myself and others. In the end, when we practice care for those with dementia with self-compassion, we can make more space for the creativity of the persons for whom we can and kindness for ourselves and them.
