By Sr. M. Peter Lillian di Maria
Suffering is a mystery — a challenge for all who have suffered — and each person’s story is unique. Often, we struggle to understand the suffering we experience while we are going through it. We never actually know in the present moment what precisely is happening to us; we are too busy trying to cope. It is frequently only long afterward that our eyes may be opened, and we can begin to understand how our suffering and pain may have changed us or challenged us. It is different for each of us.
But I have learned in my many years of ministry experience that having another listen to our story helps us find a place of serenity, and in this place of calm we can begin to understand healing. Helping others connect to the meaning of their suffering without judgment may not remove the suffering, but it may change the person’s approach toward it. Most elders can describe their pain but often need that compassionate listener to help them name their suffering. This is especially true for those who are memory impaired.
I have been privileged to travel with Dr. Michael Brescia, executive medical director of Calvary Hospital in the Bronx, NY, over the course of many years as he has lectured on palliative care and the five domains of pain (physical, mental/psychiatric, familial, spiritual, and emotional) that people experience. His presentations and my own experiences have caused me to reflect on how our elders experience these domains of pain, usually in the midst of debilitating diseases.
Each of the pains mentioned above can lead to a distinct type of suffering. Each person describes the experience of suffering differently, as it takes place deep within a person’s soul. People describing what their pain feels like may use distinct terms like “gnawing,” “dull,” or “sharp.” However, it is often difficult for people to share their suffering in more concrete terms.
We find the power of listening in the Emmaus story when Jesus comes upon the disciples as a stranger and listens. After they finish speaking, he speaks about the scriptures and reminds them that the prophets said the Messiah would suffer and die; in doing so, he would enter into eternal glory. They are so moved by his listening, his speaking, and, more importantly, his presence, that they return to Jerusalem with a renewed sense of peace. Our presence for those who suffer is the true meaning of compassion, which comes from the Latin compati—“to suffer with.” My experiences ministering to our elders with dementia has taught me the importance of living the word compassion. All people who suffer, especially those with dementia, need someone who will listen.
We can learn from the Emmaus story and apply its teachings to people who are living with dementia. As we listen, we understand their condition, and we allow their story to unfold in their time and in their reality. They, like all people, are coping with many forms of pain and suffering.
Physical pain is the easiest to detect, and often, the appropriate intervention can relieve it. But when we begin to assess for other types of pain and suffering associated with dementia, it is important to understand dementia and its progression. People who constantly say “I want to go home” are experiencing emotional and familial pain. If we can connect to the emotion by listening compassionately, we can affirm their need to be heard and to feel safe. Their desire to “go home” may mean they need to be somewhere familiar with people who know them. Where is this place? “Home” is where that person’s family is — it could be with parents, a spouse, their children, or any other place where he or she feels safe.
Sometimes we redirect too soon. Redirection may be appropriate eventually, but when we respond to the emotion first, we do as Jesus did in the Emmaus story; we connect the dots for them within their reality so they can feel that someone understands their emotional and familial pain. In doing so, we acknowledge them as the persons they have always been, and we validate that their concerns can still be shared and understood. We help them to know that their life continues to have meaning, even as their dementia progresses, robbing their memories and unwinding the fabric of their lives. They can share only what this disease of their brain allows them to believe is their present reality. The spiritual and emotional suffering they may be experiencing begins to be eased by our compassionate listening.
What does compassionate listening call us to be for those who suffer? Compassionate listening: Challenges us to be One in the Ministry we share to bring Peace to those who feel Abandoned. It allows us to Share in the Silence of peoples’ Inner being, Opening their hearts and bringing a New hope within.
Our foundress, Venerable Mary Angeline McCrory, once said, “Let us never lose sight that there is no substitute for love.” Her words are an affirmation to those who do all things in love and compassion as they minister to those who suffer.
Sr. M. Peter Lillian Di Maria, O.Carm., is director of the Avila Institute of Gerontology in Germantown, NY.
