Frontline Initiative Later Life Supports

Dealing with loss and grief:
Theirs and yours


Reverend Bill Gaventa works with The Elizabeth M. Boggs Center on Developmental Disabilities

“How are we going to tell them? How can they understand?” 

How does anyone understand? Loss is a universal reaction to changes and transitions, including death. Grief in all its forms is our response to loss. Mourning is the way we live out and act out our grief. Loss and grief have much more to do with feelings, experiences, and actions than intellect and/or cognitive understanding. Everyone can feel the loss of a familiar object, pet, or loved one. Talking about it may be hard for all kinds of reasons, including our own fear, anxiety, and experiences. The worst thing is not having those feelings recognized or acknowledged and then having to face the grief and mourning alone. 

In our support services, loss and grief are pervasive. Due to things like turnover and loss of friends or family, loss and grief are often not acknowledged. As the people closest to individuals, Direct Support Professionals (DSPs) are crucial. Who do we turn to in times of loss? To the people we know best and trust, not an expert who is a stranger. 

In workshops on loss and grief in New Jersey, DSPs and others have started defining common situations and suggested responses. Responses are based on three key principles: communication should be direct and honest, communication should be done by people who know someone the best, and a person needs the maximum opportunity possible to participate in the actions and behaviors of mourning (e.g., rituals that vary by culture and religion). Key suggestions for DSPs to work within these principles include:

  • Provide a safe space for telling the news

  • Give people time

  • Use pictures

  • Embrace feelings of grief

  • Answer questions

  • Help people remember

  • Help them participate in mourning every way they wish 

Some people may choose to go to a wake or funeral. Others may wish to send a card or flowers or light a candle in memory of his or her loved one. Some may prefer to have a separate memorial service in a program or agency to give staff and friends a time to remember, tell stories, mourn, and celebrate a person’s gifts. Helping someone mourn may also include arranging a visit to the cemetery around anniversaries and holidays or organizing a grief support group with other people served in your agency. In some instances, sharing your own feelings as a DSP may be helpful to the individuals you support. You might also consider encouraging a person’s housemates and friends to participate in the planning process so their choices are honored and they can help decide what to do. 

“Ok, then, what about us, the DSPs?” DSPs can have incredibly close relationships forged through time and support experiences. They too need safe places to talk about their feelings and opportunities to grieve and mourn. Treating DSPs in person-centered ways is just as important as treating the people served. Respect the fact that there is no one right way to grieve. The only “wrong” thing is not allowing people to do so. There is an amazing diversity of practices in the staff of most agencies and individual staff will vary greatly in their own personal experiences with loss and death. Together, staff at all levels with the people they support can learn from each other while figuring out ways to acknowledge the losses publically and develop their own agency traditions for supporting each other. If you need help, you might turn to local clergy and/or hospice personnel.  

These are tough times, but they can times that embody and exemplify the heart and soul of DSPs and the agencies you work for. Mourning can also be a celebration of gifts and love, and, if done well, a time to strengthen commitment and relationships between each other and with others in the community in ways that remind all of us about what is most important.