By Eboni Green
Some would say you learn the most about yourself when persevering through adversity. That grit, a term that speaks to strength of character, passion and resilience, as well as an ability to accomplish goals, cannot be affirmed until it is tested. Donna Marie Johnson’s grit was tested when her 43-year-old husband was diagnosed with early-onset dementia.
According to the National Institutes of Health, “Early-onset Alzheimer’s disease occurs between a person’s 30s to mid-60s and represents less than 10 percent of all people with Alzheimer’s”. Johnson’s husband has days when he is lucid and engaged, and others when he is isolated, quiet and disoriented.
Johnson and her family were heartbroken when they heard his diagnosis, but had to quickly adjust to this new reality, because her husband was the sole breadwinner. She had previously dedicated her time to homeschooling the couple’s three children, but this diagnosis meant she would need to make adjustments. . “My husband cannot be left home alone, due to dementia and mobility challenges. So, in addition to homeschooling our daughter during the day, I also keep a close eye on him and support him.”
Spirituality as a Coping Mechanism
Along with tapping into her grit, Johnson embraced her spirituality when faced with what was a devastating situation. Spirituality can serve as a coping mechanism for many family caregivers like Johnson, particularly when emphasis is placed on empowerment, resilience and gratitude. It also helps caregivers to acknowledge that caring for someone you love can add meaning to your life.
For Johnson, caring for her husband has been as rewarding as it has been challenging. “I have heard of other families where there is constant chaos that adds to the stress of caregiving. Fortunately, that is not our situation,” she says. “The Lord helps me stay focused on serving Jesus as I care for my husband, and this helps me stay grateful no matter the circumstance.”
Building “Healthy” Caregiving
Johnson, however, also was aware that she could not go it alone, due to anxiety and ongoing cyclical grief. The truth is that with every change comes loss, the need for healthy grieving and a chance to experience some measure of hope. “It became critical for me to build a compassionate and empathetic support system from the ground up so that I could stay emotionally and physically healthy, and continue growing as a strong support for my husband.
“I did not have any supportive relationships with other people locally who could empathize with me, from either a personal or professional perspective. So, I started by getting therapy … from a professional who has two loved ones she cared for with dementia. She helped me to understand that I should also seek a support group for ongoing support because my situation is long term,” she says.
It was critical for Johnson that such a support group be based in Christian theology, and specific to spousal caregivers dealing with dementia, so she ended up traveling more than an hour from home to attend one. But she now says, “From the very first time I attended, the group was worth the drive. It helped me become a better and more informed caregiver.”
Faith-Based Communities Offer Help, Ministry
Faith-based communities nationwide have implemented programs to assist with transportation, nutrition, education and respite when caregiving assistance is needed. But not every community has the training or capacity to offer a faith-based program to help family caregivers. Sheila Welch, the leader of Johnson’s support group , and the Coordinator of the Caregiver’s Ministry at Due West United Methodist Church in Marietta, Ga., works tirelessly to offer help, hope and inspiration to dementia caregivers in the surrounding communities. This ministry has recently expanded to include training for faith leaders of all denominations so that they can better serve families facing Alzheimer’s and related dementias.
Johnson and her family feel fortunate to have found a program like the one at Due West. Empowered and inspired by the help she received from Welch, Johnson now wants to start a support group for spousal caregivers closer to where she lives on the south side of Atlanta. It is her hope that with Welch’s assistance, she will be able to help families who find themselves in a similar situation emotionally, physically and spiritually.
“As a woman of God who married a man of God who has a gift of patience, I am blessed with a great foundation in my marriage that has sustained us through the most trying ordeals of our lives,” said Johnson. Her outlook for the future is positive, her experience has helped her fortify her grit, her life has meaning and she is grateful for all that she has learned while caring for her husband.
Eboni Green, Ph.D., R.N., Chair of ASA’s Forum for Religion and Spirituality (FoRSA), is a registered nurse, a family caregiver and a co-founder of Caregiver Support Services, a nonprofit offering training and consulting for family caregivers in Omaha, Nebraska.