Posted on August 31, 2023
Content Note: this blog post discusses loss and grief.
In the almost seventeen years I have worked in the human services field, a prominent occurrence has been grief. C. S. Lewis said if we love anything at all, we are at risk for grief. Every single person in the history of humankind has at one time or another lost someone or something important to them. We all have experienced loss; it is devastating for each person and nobody deals with or goes through grief the same way.
In James K. A. Smith’s book, On the Road with Saint Augustine, he describes what it means to be a friend. We all have burdens in our lives and a friend is someone who helps us when we reach the most difficult places in our lives — often, a time when we are grieving. Smith says, “… alleviating the burden is not a way to love them. Friendship is staying close enough to put a hand on their shoulder while giving them enough room to feel the weight. … [A friend] is present, listening, leaving you room but not leaving you.”
Blurred Lines: Friend Versus Staff
Within human services, there is debate about the term “friend.” As Direct Support Professionals (DSPs), we aren’t friends, we’re staff. This distinction is significant. After all, who has friends who are paid to spend time with us, and held accountable for how successful they are in helping us live our life on our own terms? None of us do, because that’s the function of a support staff, not a friend. Consequently, it’s important for DSPs to support people in developing and maintaining their own friendships, rather than trying to fill that role ourselves.
Even so, there is a certain aspect of camaraderie within the relationships between a DSP and the people they support. Professionalism is the foundation, but connection and understanding are part of that. While working in this field for the last seventeen years, I have been a “friend,” as James K.A. Smith defines it, to people who have experienced loss.
There was a person I’d worked with since I first started in this field who I still know and see. He lost both of his parents in a very short period of time. They were a major support system in his life, and like many of us would, he felt completely lost when this happened. I supported him a few times a week as his job coach. Not only did he keep a routine of working to help him cope with his grief, but he also appreciated his job coaches being there and letting him process the loss of his parents.
I could understand where he was coming from in a certain respect since I had lost my father around the same time his parents passed away. I was able to be present with him and let him grieve in his own way, without trying to fix things. Loss really isn’t a fixable process.
People with disabilities unfortunately experience grief often: frequent change of staff, loss of roommates, death of friends or family, moving from one place to another. At times, people with disabilities have lost more frequently and deeply than others, especially in regard to staff turnover. Constant change of people in anyone’s life is taxing.
When someone we support passes away, it affects many: that person’s family and friends, people who may have received services alongside them, the team that supported them. As DSPs, we often find ourselves trying to support others through their grief, even as we process our own.
Over the past several years of my career, I have had to work through this dual grieving process, as the team I’ve been a part of has unfortunately experienced the loss of both people we support and team members. In each situation, the grieving process and the supports I was able to provide differed.
When someone our team supported passed away a few years ago, some of the people I worked with understandably wanted to talk about loss and about the person who had died. I encouraged one person to write down things they liked about the person who passed away and what they missed about them. Some others wrote memories. I was asked by the sister of the gentleman who died to speak at his memorial service. To prepare, I gathered staff and friends of his, thoughts and memories. The staff and I collaborated to ensure the people we supported who were his friends were able to attend his memorial service, which helps some with closure. They were there to support his family and show their care and love for their friend.
Another gentleman I had worked with was receiving hospice care, and I was able to spend time with him a few hours before he passed. Some of the time he was sleeping, but a few times he woke and saw me and smiled. I could tell in his eyes he recognized me or at least liked that I was present and spending time with him, telling him I was glad to have known him.
A different person I supported had his wife, friends, and former staff with him in the final hours of his life. He died while we were there, and though his wife was obviously and understandably grieving, she was grateful for our presence in that moment.
Throughout all of these losses, perhaps the biggest way I was able to provide support was by simply being present to the person in grief. Grief is always with us, but having someone by our side can help make the heartache easier to bear.
Unity in Grief
At times, when there is loss after loss, we don’t have the capacity to be present for one another in the ways we may want. The complexity of grief can cause us to retreat from others; I have experienced this more than once. Giving people time and space until they are ready to be around others is important. There is no time limit to grief. Keep in touch and check in even as you give the person space.
When you have a tight-knit group that spends a lot of time together, as is frequently the case in the human services field, we often find ourselves grieving together, as well. In those moments, sometimes the line between professionalism and friendship blurs slightly. Keep that line in mind, even as you remember: loss separates, but it also brings people together. We need each other to get through difficult times.