Life After Caregiving

The transition from caregiver to survivor is a journey marked by many complex feelings, including grief, which may begin before the death of a loved one. Caregivers may experience grief when their veteran was first injured, diagnosed, or as their condition worsened. As we show support to families who lost a military loved one after having been a caregiver, it’s important to keep in mind that each caregiver’s journey through loss is unique, and they may experience or show their grief in different ways.

“What is life after caregiving like?’ is an important question to ask, but it’s under-discussed within the caregiving community. During the Seventh Annual National Convening, co-hosted by the Elizabeth Dole Foundation and Philips, representatives from the U.S. Department of Veterans Affairs, TAPS, the American Red Cross Military and Veteran Caregiver Network, and In Their Honor, LLC. participated in a panel discussion on how to best support military and veteran survivors before, during, and after their veteran passes away.Announced during the convening, the new “Caregiver to Survivor” collaboration between the Foundation, TAPS, and American Red Cross Military and Veteran Caregiver Network will help caregivers gain a better understanding and access to resources when they transition to the role of survivor. This partnership along with the Foundation’s direct care services gives relief to survivors. These tips and resources are designed to give hope and clarity and ease the transition as much as possible.Follow along to learn more and for helpful tips for caregivers, family members, and others who work with individuals entering this next phase of the caregiver journey.During the panel, Founder and Chairman of In Their Honor, Dr. Qwynn Galloway-Salazar, discussed the importance of giving community, collaboration, and compassion to survivors. Salazar said survivors often feel their focus is centered around their loved one’s death while forgetting they’re still living.

Dr. Qwynn Galloway-Salazar (pictured center) speaks to how caregivers, veterans, and supporters can instill hope in one another through the journey of loving, caring, losing, grieving, and living on.

As caregivers become survivors, Dr. Salazer advises caregivers to know that they’re not alone in this process. There is hope at the end of life, especially when that hope is shared with others who share similar experiences. As Salazar said, “all caregivers are hope to other caregivers.” Grief is often associated with feelings of loneliness, fear, anger, and shock. These emotions are important indicators of allowing people to feel. It means they’re taking the steps to process those emotions on the path to having hope. The meaning and purpose caregivers feel carries on as a survivor.“There's hope we can instill in our veterans and our caregivers at the end of life,” Dr. Qwynn Galloway-Salazar said during the panel. “Hearing other people's experiences is hope. For all the caregivers in the room, you’re hope to other caregivers. For all the veterans in the room, you’re hope to other veterans.” There is hope for all caregivers and survivors. Restoring and finding hope can start with:

• Practicing gratitude
• Taking time for self-care
• Expressing your feelings
• Cultivating optimism
• Random acts of kindness

Check out Mental Health America or the Family Caregiver Alliance for more ways to seek hope. Advance care planning is an important process that includes discussing and documenting the veterans' preferences by making healthcare decisions based on their behalf. The VA’s Director of Care Management and Social Work Services Laura Taylor advises caregivers to initiate conversations with their loved ones about what matters to them. The caregiver to survivor transition is not easy and may be one of the most stressful events a caregiver faces. Preparing for this experience can help ease stress when a loved one passes away, therefore having these tough conversations with the person receiving care can give clarity in making future decisions.The VA has released a new program specifically for veterans and caregivers to have these challenging conversations in a group setting. Advance Care Planning via Group Visits helps caregiving families discuss subjects like illnesses, injuries, mental health, and more. Care planning is not only good for the person being cared for, but for the wellness and longevity of the caregiver.

Ann Duff, Chad Maxey, and Laura Taylor (pictured left to right) share resources from the VA and advice to caregivers so that they feel prepared and supported during these tough conversations.

Grief may become more prominent or change as the caregiver becomes a survivor. Survivor Assistance Director Ann Duff works within the VA to produce benefits for caregivers transitioning to survivors. Benefits include compensation, burial stipends, and other benefits tailored around the veteran. The VA has put together a 68-page Planning Your Legacy pamphlet to help caregivers learn more about benefits and questions to ask their veteran.Program Manager for Family Care and Bereavement Chad Maxey also works to provide spiritual support for the caregiver and veteran at the VA. During the panel, Maxey echoed that grief is compounding, and mourning begins before a loved one has passed. Services within Hospice and VA medical centers include consultations before the loved one passes, spiritual and religious functions, bereavement follow-up care, and other supportive options. Visit caregiver.va.gov for more options. Caregivers experience many kinds of loss among spouses, parents, partners, and other loved ones. Understand it’s okay to take time to grieve and embrace feelings as they come. Caregivers, give yourself the grace to know that intense emotions are normal and common. It's likely you’ll continue to miss your loved one, but the pain from the loss will lessen. Having a support system and resources can help guide you through and comprehend this journey.The Elizabeth Dole Foundation and partners support, acknowledge, and are present with caregivers who begin this transition. You are not alone and asking for help is encouraged. For additional resources, please visit https://www.taps.org/additionalresources.Curious about this new identity as a survivor? TAPS has also created a webinar and resource packet about life after caregiving.