On a recent episode of Health Futures Taking Stock in You, Dr. Pauline Boss explained “ambiguous loss” – the painful paradox of having someone with dementia physically present but psychologically absent. This creates “frozen grief,” often unrecognized by others, leading to caregiver isolation. Dr. Boss recommends joining support groups, maintaining social connections, accepting help, finding controllable activities, and educating family members. Even as an expert who’s written eight books on the topic, she found caregiving for her husband humbling, noting “it was easier to write about it than to do it.” Community support remains essential alongside medical research.
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In the challenging journey of caring for someone with dementia, there’s a specific type of grief that often goes unnamed and unacknowledged. Dr. Pauline Boss, emeritus professor at the University of Minnesota and family therapist for over 45 years, calls it “ambiguous loss” – the painful experience of having someone physically present but psychologically absent.
The Paradox of Presence and Absence
“They look like who they used to be, they even sound like who they used to be, but they’re a vessel of who they used to be,” explains Dr. Boss in a recent interview. This paradox creates what she calls “frozen grief” – a state where traditional mourning can’t occur because the person hasn’t died, yet the relationship as you knew it has significantly changed.
Unlike the death of a loved one, which society recognizes with rituals, cards, and support, ambiguous loss often leads to isolation. Friends don’t know what to do, so they stay away. There are no established customs to acknowledge this unique form of grief. The caregiver is left in limbo, experiencing profound loss without closure.
The Health Toll of Caregiving
The statistics are sobering: caregivers often die at higher rates than their same-age peers. The chronic stress of caring for someone with dementia, compounded by isolation and unresolved grief, takes a tremendous toll on physical and mental health.
“It’s not your fault,” Dr. Boss emphasizes. “It’s the fault of the illness.” Understanding that the culprit is external – the ambiguity itself – can be the first step toward coping.
Finding Support and Meaning
For the 16-18 million Americans caring for loved ones with dementia, Dr. Boss offers these key recommendations:
- Join peer support groups. Organizations like Duet Partners in Health and Aging (through their Meaning and Hope Institute) provide vital connections with others who truly understand. Online groups have proven just as effective as in-person meetings.
- Maintain human connections. “If your only contact is the patient, your own mental health will deteriorate,” warns Dr. Boss. Regular social interaction with other adults is essential.
- Seek and accept help. Let neighbors, friends, and family assist with simple tasks, whether it’s a meal, a shopping trip, or sitting with your loved one while you take a walk.
- Find activities you can control. When so much feels out of control, engage in activities where you can predict the outcome – cooking, knitting, writing, or other creative pursuits.
- Share information with family members. Dr. Boss recommends having relatives read about ambiguous loss to help them understand what you’re experiencing, especially those who live far away and may not witness the daily challenges.
Personal Experience Shapes Understanding
Though Dr. Boss has authored eight books on the topic, including “Ambiguous Loss,” “Loss, Trauma and Resilience,” “Loving Someone Who Has Dementia,” and “The Myth of Closure,” she admits that “it was easier to write a book about caregiving than to do it.”
When her athletic husband became increasingly ill and eventually required wheelchair use, she experienced firsthand the helplessness that comes with caregiving. “With caregiving, you’re flying blind all the time,” she reflects. “Your identity as a caregiver becomes overwhelming, and you sort of lose everything else about who you are.”
Looking Forward
As we face a future with more dementia cases among aging baby boomers, Dr. Boss emphasizes two critical needs: continued medical research into prevention and treatment, and stronger community support systems.
While technology may offer some assistance, human connection remains irreplaceable. “Honor thy neighbor, help thy neighbor,” she urges, reminding us all that something as simple as offering a caregiver a 30-minute break to walk around the block can make a profound difference.
By naming this unique form of grief and supporting those experiencing it, we can help transform frozen grief into a more manageable journey – one where caregivers feel less alone and more equipped to find meaning and hope amidst the ambiguity.
