Holding space, or gently receiving and holding the emotional experience of others, is absolutely fundamental to good care for persons with dementia. We as caregivers practice this skill very often, and it requires that we are able to hold all the different parts of ourselves. We have to be able to recognize the different voices and personae inside of us and what they need from our larger and more spacious sense of self. For me in caring for those with dementia, it means taking a step back and looking at the wider picture of what is happening for the person before me, and then reengaging with a sense of purpose and connection with them.
I used to visit a patient with advanced dementia who was completely bed bound. Every third time that I visited her, she would weep as I sat with her. The first time that I sat with her, I felt my own sense of overwhelming sadness prompting me to soothe her. So I decided to respond, and I called her name softly and soothingly. I reached out to hold her hand. I continued to pay attention to the feelings of my body as I sat in the chair next to her bed. I wondered if I could do more for her. I talked to the facility nurse and found out she was well medicated for pain, but occasionally cried spontaneously. Whenever I sat with her, I held space for this woman, for me, and for my desire to know what her experience was. She never responded to my words with any kind of verbal signal that she knew someone was next to her. She would turn her head towards me every now and then when I talked with her.
I also never was able to connect with the woman’s family on the phone, though I called them many times. When we talked about this woman at interdisciplinary meetings, the nurse and I would wonder what she might be going through. As I got to know her better, I continued to sit next to her and hold her hand, no matter if she cried or smiled. I held space for her, for me, and for the other care staff at the facility and at our hospice. We created a circle of care for this patient together.
Well established models for performing this work in care based on mindfulness can be helpful to explore and get to know through practice. Joan Halifax’s GRACE Model of Compassion is a good example. The method Halifax talks about can be simplified into two essential moves. First we receive the experience of others fully by using our empathy skillfully. Second we consider our choices when we take compassionate action. We sit next the crying patient who can’t talk to us and feel everything that comes up without identifying with it. We soothe, her, hold her hand, find staff to get her more medicine.
To practice empathy skillfully we need to do two things. First we find the grounding or anchoring element of our experience. I often do this by connecting with the sensations of my bodily presence as I sit or stand in the room. I notice how my feet feel on the ground, how my lungs and chest feel as they breathe in air, and how my fingers and hands feel as my blood pulses through my body. I often feel a sense of buzz or hum in my fingers. As we practice mindfulness regularly we become more aware of these sensations. We can also become aware of them just by turning our attention to them periodically as we go through our day.
Second, we notice whatever sensations and emotions come up for us when we look at, here, or touch the person for whom we care. We might feel a quickening of the pulse, a sense of openness and freedom, or a sinking feeling in the pit of our stomach. While we feel these sensations we can also connect to what emotions we identify, and we can recognize emotions and sensations are often coupled. They are also distinct from our larger sense of self, which is like the canvas across which these emotions are painted. We can reuse this canvas again and again as the emotions and sensations arise and then fall away.
Compassionate action requires two things. First, we have choice in how we respond. We can find a variety of actions that help us and the person with whom we are relating. Most of the time only a few actions will cause harm to the person for whom we provide care. We may need to cause harm based on our own level of distress, because sometimes when we as caregivers are overwhelmed, we may need to leave the situation causing us distress without helping much or at all. If we practice the kind of framework I am proposing here (or Halifax’s framework) this is unlikely to happen very often.
Second, we take action that we perceive will have the best chance to alleviate suffering. We can hold and validate emotions for example, giving them name and shape in conversation. We can reach out to touch the person in order to hold them physically and comfort them. We can go find a nurse to give a patient in a hospital or assisted living facility more pain medication. We can call the person’s son or daughter to relate a need or facilitate connection. We can share art or music with the person. We can bear witness to them dying and honor their life by being a part of their death.
Compassionate action is the fruit of being grounded, empathizing, choosing from multiple options, and taking action to help. We as caregivers are all capable of this, when we maintain conditions that help us stay in our right mind and respond to the needs of those for whom we care. We may not be able to choose an ideal response, but whatever we choose that helps will be something valuable for the person with dementia, us, and others who care.
