Terry Petzar Bergeron devoted 16 years (1978-1994) to caring for her husband Paul who suffered from early-onset Alzheimer’s disease. Even during her care giving tenure, Terry turned her attention to helping other caregivers endure the agonizing struggle characteristic of dementia diseases. She volunteered at the Brevard Alzheimer’s Association, assisting in may capacities and served a term on the Board of Directors (1982-1984). She was there to support staff and caregivers on their long and arduous care giving journeys. She shared her experience willingly to help others—she spoke to groups, called on caregivers and care receivers at home, shopped for them, accompanied them to doctor appointments, provided respite, assisted them in making placement decisions, visited them in nursing facilities—she became an “expert” willing to assist anyone, anytime, anywhere! She often took late night calls from frazzled caregivers who needed comfort, support, and care suggestions.
As she uncovered more and more families coping with dementia diseases, in 1991 she responded by starting a monthly support group at her church, Holy Name of Jesus in Indialantic, Florida. Thirteen years later, the support group continues. As regularly as her kind, compassionate hear beats, she is present the second Tuesday evening of every month year round. Her support does not end with patient placement or death; caregivers become a part of her extended family forever! (She regularly visits caregivers who are now in nursing homes themselves.)
Once Paul was placed, she began her day at the nursing home, feeding him and other residents who needed assistance, followed by a stop at the Brevard’s Alzheimer’s Foundation office to see what she could do to help. She worked on fundraisers, mail-outs, represented the organization at health & wellness fairs, community events and was instrumental in advocating for community education to reduce the center to volition. Then, she volunteered to help in that center! She has adopted a dementia specific adult daycare living facility, and has racked up a long resume of volunteer activities and support including relocating residents during recent hurricane evacuations.
In 1995, she advocated for a Robert Wood Johnson Foundation “Faith in Action” Grant that would provide free respite for caregivers in Brevard County. Church volunteers provided her breaks during her desperate years of caring for her husband and she wanted respite to be available to all caregivers countywide. Hence, she became, and 10 years later still is an active volunteer in Space Coast Interfaith Respite Program. She assists all volunteer orientation/training workshops throughout the county education and preparing volunteers who provide temporary relief to caregivers and companionship for care receivers. Nearly 1000 persons have attended trainings.
Terry remarried 6 years ago and before her new husband’s stoke, they did respite together. She has added stroke support to her resume, assisting, educating, and encouraging caregivers with the same enthusiasm and energy as she continues to do in the Alzheimer’s disease arena!