When do you realize you are a family caregiver? Responses in my experience range from the darkly humorous to the completely visceral, such as: “When my husband started calling me ‘mom.’” Emerging caregivers are often not new to caregiving at all, but rather isolated from the pack. This delays significant steps toward caregiver support and activities that contribute to well-being and caregiver identity, such as joining groups for information, support, stress reduction or counseling. There may also be significant resistance to the word “caregiver” and associated activities. It can feel one-sided and lonely; a loaded word fraught with fear, judgment from friends and comparisons to other family members who may have carried this title in the past.
Emerging as a caregiver can be an uncomfortable and vulnerable time, a trust free-fall. A sense of loss and disappointment is completely natural. Many caregivers I have known express deep concern or disloyalty if a family member has Alzheimer’s disease and they must make some decisions without their input for safety reasons. Feelings of fear, loss and a sense of betraying your family member are not the most helpful motivators for self-care and well-being.
This is where the term “care partner” can be extremely helpful. By using the words “care partners,” we are acknowledging how collaboration helps us notice and respond to the small changes early on, and how they shape our behavior, decisions and the quality of our communication and relationships. By employing the phrase “care partners” we are not alone. We are including the person we love and care for in the caregiving paradigm as well as the many others who will inevitably be involved in decision making and care: professionals, other family members and personal friends. A partner paradigm strengthens our interconnectedness and can bring more awareness to the kindness and support that is right under our nose.
Thankfully, due in large part to the success of the Alzheimer’s Association and individuals living with memory loss who have courageously come forward to challenge stereotypes, there are now many places for emerging care partners to meet and explore resources for compassionate, uplifting and meaningful engagement in the community. The word caregiver will not likely be replaced in our vernacular, however, the phrase “care partner” may help bridge the gap and include those who are new to a dementia diagnosis when discussing the role of caregiving in family life.
Take the next step
- Visit the MADC community calendar for more information on care partner activities
- Call UM-Memory Connections at 734-936-8803
Laura’s passion for wellness and the expressive arts stems from wisdom shared by adults living courageously with dementia, their care partners and her own personal experience with family caregiving. These profound experiences continue to shape her vision for a world that unconditionally honors and values adults experiencing memory loss to live meaningful lives within the community and family. Laura’s professional interests include: exploring and nurturing stress resilience, emotional healing, self-compassion and mindful approaches to living well in a life that includes memory changes and care partnering. Laura has worked in memory care since 1997 and is a graduate of the University of Michigan School of Social Work with a Specialist in Aging Certification.
The Michigan Alzheimer’s Disease Center (MADC) was established at the University of Michigan Health System, through affiliation with the Department of Neurology and aims to conduct and promote research on Alzheimer’s disease and related disorders; ensure state-of-the-art care for individuals experiencing cognitive impairment or dementia; and enhance the public’s and health professionals’ understanding of dementia through education and outreach efforts. The infrastructure of the Center stems from a 20 year history as an NIH-funded Alzheimer’s Disease Research Center.