It Takes a Village - A Caregiver's Journey to Self-Care
The word “self-care” in today’s culture may evoke images of quiet meditation or a blissful massage. However, ask most caregivers of people with dementia about the concept and a frequent response is “that would be nice, but who has time?” To better understand the idea of self-care in the life of a current caregiver, I sat down with a longtime client of CaringKind, Ann Burgunder, in September to explore its reality in her caregiving journey.
When Ann’s partner, Ti, began to show frightening symptoms of memory loss and disorientation, eventually receiving a diagnosis of Mild Cognitive Impairment in 2006, Ann’s initial focus was on his well-being and how to keep him as engaged as possible. Ti’s evaluation came with a recommendation to reach out to CaringKind. Ann first connected with Paulette Michaud, the inaugural Director of the Early Stage Program. Ti began attending a group, and after he had done so for about a year, Paulette suggested that Ann consider attending a support group for herself. This group, which she has now attended for nine years, introduced the idea of self-care in the form of the respite, emotional support, and practical advice on navigating the peaks and valleys of caregiving that it provided.
Ann soon learned that self-care in the context of dementia caregiving requires moving beyond the idea of self. For her, it necessitated creating another support group of sorts, this one, in Ann’s words, “a community of caregivers for myself,” so she was “taking care of Ti, but not alone in doing it.” Ann reached out to friends and neighbors, eliciting their help to ensure that Ti was engaged, supported, and, eventually, never alone. Some friends accompanied him to Meet Me at MoMA, a program for individuals with cognitive impairment, while others participated with Ti in The Unforgettables, a chorus for people with dementia and their caregivers. Ti’s roommate made sure that his needs were met on the two nights that he stayed in his apartment each week, providing Ann with some respite from the five nights that she and Ti spent together at her apartment. As Ti’s condition progressed, so too did his need for more structured care. Ann eventually facilitated the introduction of professional caregivers, and also enrolled Ti in two adult day programs to ensure his stimulation and increase his social engagement. She never used these formal supports to replace the network she had developed, only to expand it so that she and Ti would continue to receive the help they needed and deserved.
Before his diagnosis, Ti and Ann used to enjoy attending theater and cultural events together. But as the disease progressed, such activities became more challenging for Ti. Ann came to recognize that she can and needs to continue to participate in these things for herself. Doing so, even alone, provides her with another opportunity for self-care and honors the spirit of the commitment she and Ti have made to each other. Ann also found that restorative practices, such as exercise and tai chi, are helpful forms of self-care. However, going to her own full-time job, along with coordinating Ti’s care, often made it difficult to incorporate these practices into her routine. Through this challenge, Ann recognized that having her own work was a form of self-care, providing a structure and routine that helped maintain her well-being. For a significant portion of her caregiving journey, Ann worked full-time, enjoying the benefit of a supportive workplace. She retired in 2014. But following a year to complete long-neglected projects, Ann recently decided to return to working part-time, reclaiming the benefit of a structured schedule to keep her priorities and their related tasks in relative balance. The network of caregivers that she has so meticulously cultivated over the years again remains essential in allowing Ann the ability to return to work that she finds personally meaningful.
The path of incorporating self-care into the fabric of a caregiver’s life is a journey as unique as that of the person with dementia’s experience through his or her illness. Ann’s creativity in curating a network of support and services – including people, cultural institutions and programs, and even work – gives new meaning to the concept that “it takes a village” and shows that such support is crucial to caring for all those impacted by dementia. Yet, self-care in all its forms is not a panacea for the struggles of caregiving. In a follow-up email pursuant to our conversation, Ann reflected on the reality that despite finding ways to practice self-care, the experience of caregiving remains an exhausting one with ever-continuing challenges. The journey of the caregiver, caring for the person with dementia and caring for oneself, is taken one day at a time.
Many thanks to Ann for generously sharing her story with us.