Grief is a profound and complex experience. When losing a loved one, it can often begin before the physical loss occurs. This form of grief is known as anticipatory grief, and it can deeply affect both patients and their loved ones. So, as a caregiver, how do you manage it and provide the best care for your loved one while they are with you? What are the symptoms to look out for? A bereavement specialist at Chapters Health System, and a client she helped, show us how this journey affects families and the resources that make a difference.
Understanding Anticipatory Grief
Anticipatory grief is a natural stage in the grieving process, but it is different from the grief you likely know. Grief is traditionally discussed in terms of the impact on the loved ones of a deceased person. Anticipatory grief happens before death and can be felt by not only loved ones, but the patient as well.
It can be triggered by many life experiences, mostly commonly the diagnoses and ongoing treatment of chronic or terminal conditions. These conditions include, but are not limited to
However, chronic illnesses aren’t the only trigger. Amputee patients can also experience symptoms of anticipatory grief as they adjust to a new reality. Even an impending divorce or loss of a pet can trigger feelings of anticipatory grief.
Everyone experiences anticipatory grief differently. It’s a reality that Jeannie Robinson, a bereavement specialist at Chapters Health System, is very familiar with in her visits with families of hospice patients.
“I had someone describe it to me once as a loss in slow motion,” said Robinson. “Instead of grieving the loss of a person, it’s grieving the incremental losses along the way, such as the loss of their ability to walk, to speak, and socialize. There is a stage of grief for each of those losses.”
When coupled with the demands of full-time caregiving, Robinson says anticipatory grief can lead to strong feelings that build over time, affecting how families and caregivers cope.
What are the Symptoms?
Patients and caregivers may face a range of intense emotions. For patients, you may find them worrying about how their loved ones will carry on without them. Fear, irritability and anger are also common in patients.
For caregivers, you may notice them withdrawing from social interactions due to the overwhelming demands of caregiving. Those demands of caregiving can lead them to neglect their own health and wellness. Feelings of loneliness, depression and guilt are common in caregivers.
“What we see many times is a single family member taking care of a patient by themselves,” said Robinson. “That can lead to them feeling alone and that is not what we want. You are never alone.”
A Personal Story of Anticipatory Grief
After her mother was diagnosed with terminal cancer, Autumn Widdoes became a caregiver and quite familiar with the unsettling feeling of anticipatory grief. Widdoes says she faced immense stress and anxiety while juggling full-time work, caregiving responsibilities and caring for her sister with developmental disabilities. Widdoes soon realized that immense stress was just a part of her grief journey.
“I couldn’t put my head in the sand anymore,” said Widdoes. “My mom actually told me ‘you’re like a soldier on the frontline. You’re literally giving everything.’”
The realization led Widdoes to reach out to the bereavement specialists at Chapters Health System, where she found Robinson’s support group.
“Finding someone who truly understands your experience can be challenging,” said Widdoes. Jeannie’s support made a significant difference for me. Having someone to talk to helped me manage my grief before my mom passed, providing a psychological support that others couldn’t.”
You can hear about Widdoes full story on the Chapters of Life Podcast.
The Role of Support Groups
When it comes to managing anticipatory grief, support groups can be valuable. These groups offer caregivers a platform to share their experiences, seek advice and find comfort in knowing they are not alone. The sense of community and shared understanding can be incredibly comforting and practical for those navigating the difficult journey of anticipatory grief. Many mental health agencies and hospice organizations, such as Chapters Health, offer grief support at no cost.
“I started the support group to provide a space for people like Autumn to share their experiences and support each other,” said Robinson. “The group helps caregivers realize they are not alone and allows them to exchange stories and resources. It can be a crucial source of comfort and practical advice.”
The Help of Loved Ones
Dealing with anticipatory grief is not something you have to face alone. For families and friends of caregivers, practical support at home can make a significant difference. By being preemptive and considerate, the caregiver’s needs can be met which in turn helps them cope with anticipatory grief. According to Robinson, one way this can be done is by being specific rather than vague.
“For example, offer to bring dinner or sit with the loved one so the caregiver can take a break,” said Robinson. “Being proactive and thinking about what might benefit the caregiver can make a significant difference. Caregivers often put their own needs last, so practical support is valuable.”
Chapters Health System is committed to serving the needs of its patients, families, caregivers, health providers, partners, and communities.
For more information, please call our helpful Chapters Health and HospiceHelp24® team at 1.866.204.8611 or Contact Us.
