(Originally from dementialettersproject.com on January 2018)

Have we become complacent in care? In Life Enrichment? Have we thrown around term “Person-Centered Care” so much that it has lost meaning? Have we felt a lingering burnout and forget to become relational with the person we are caring for? Far too often when a new employee comes on board, they are giving a 2-minute briefing about a resident, then told to look at the board outside their door or at the possessions in their room in order to get to know a resident. This small segment of information does not show the life each individual has lived, yet it is relied on by care professionals and seen as enough knowledge to proved proper care. They believe that in taking in only this information they now know the person, have become relational with this person and can do their job successfully. It is time to reconsider this belief. We frequently feel that there are not enough hours in a day to learn more than what this picture shares, but how can we provide care without learning more?

When looking in a person’s room or the objects outside of their door, more often than not we see only what the family has selected, what they feel is important to share. It is another person’s narrative of the life of the individual sitting in front of us. The comments made by fellow co-workers is again, another person’s narrative. It can be cold, short, and sometimes inaccurate. Dementia or not, the person’s narrative of their own life is far more impactful and informative. When we look beyond this layer, we understand the deep, dynamic, beautiful life this person has lived and wishes to continue to live. Only when we use this information as a launching point towards becoming relational can we provide the best care and support possible. There is a major hurdle to becoming relational with a person with dementia, and it is not what you might think. It is not their memory or loss of language that makes it difficult. The biggest challenge is that frequently fellow staff warn their co-workers and volunteers about the residents, instead of inviting them to get to know each individual they will encounter. They become a care machine that erases the freedom of time to sit and talk or sit in silence with a resident. A life is more than a collection of things in a room. They are more than the chart at the nurse’s station. They are more than the warnings from fellow staff.  Can we really enter into a relationship when we have warnings and judgments about who this person might be? I was once told to watch out for a resident, for they will surely make me cry. That this person is nasty and cold. I have been warned about a resident who was labeled as a challenge and a disruptor, not worthy of engaging in conversation with under any circumstance. Do you want to know something? They become two of my favorite residents, and they impacted my life as much as I hope I impacted their lives. I frequently was the only person to speak with them other than for medical purposes. Their belongings and chart became human only at the moment when I was willing to enter into a relationship with these residents, allowing me to provide the programming and support they were seeking.

Life does not end, the individual’s interests, stories, and joys do not disappear when they move into a care community. Care communities in general lean too heavily on the chart, and a second “chart,” the possessions in the resident’s room. If that was our only knowledge, one would never know the struggles and triumphs in a person’s life that made them into the person we see before us. These individuals would remain a 2-dimensional task item on a list of to-dos.

The work of a care team, from the CNAs to the Life Enrichment team, to the doctors, is fast-paced. Many are often overworked, having limited time available to spend with each resident. They fear HIPPA and the Ethics boards and use it as an excuse to avoid becoming relational with a resident. (If you are working within your scope of practice, and are not sharing the information with others, you are okay.) It is the sad nature of health care. I must ask the question though, if you don’t take the time to become relational with the individual, to really get to know them, beyond a medical chart, beyond examining their belongings, can you really care for an individual properly? Do you simply prescribe medications and complete tasks that you masquerade as care? Do you see them as a burden because they will not play bingo, and then force coloring books on them so that you may fulfill your team’s engagement quota? Or, do you care for the person at this moment, in this moment, and work to improve their life? How can we make the time to SEE the person, to become relational, to provide care that is directed by their interests, needs, and desires? How can we change the way healthcare operates, transforming this “machine” into a community, one that is constantly willing the good of the other? Isn’t that what we are all seeking anyway? Isn’t that what pulled us into the work we do in the first place?

Each person we care for has lived a dynamic, complex life, one that is still evolving, growing, seeking. The chart, the words of our co-workers, and the objects in a room can help us crack open the book, but it hardly tells us the story. Find the time. Make the time. Engage. Seek to know the depth of a life.