Marc White describes his wife Lisa as “a little ball of fire who is kind, funny, and playful.” He calls her a compassionate and genuine people-pleaser who brings out the best in others.
These traits, “just to name a few,” are what ultimately led him to fall in love with her; the two got married in 2012. But just six years later, in December 2018, they were blindsided when Lisa was diagnosed with younger-onset Alzheimer’s.
An estimated 5-6% of the nearly six million Americans living with dementia have a diagnosis of younger-onset dementia, which describes any form of dementia that develops in people under the age of 65.
Lisa, who was the director of operations and co-owner of a clinic in North Carolina, eventually had to leave her beloved profession as her Alzheimer’s progressed. In early 2023, Lisa received an additional diagnosis of frontotemporal dementia (FTD).
“Lisa and I always worked together with a can-do attitude when it came to tackling issues and figuring issues out,” Marc says of their journey navigating her diagnoses. He opens up about their experience as spouses walking this path together, sharing how support groups have been a pivotal part of coping with the changes Lisa’s diagnoses have brought to their lives.
Marc shares the story of Lisa’s diagnosis and their journey to finding the best healthcare team at the Johns Hopkins Hospital:
“In 2015, Lisa contracted a bad case of Lyme’s Disease, and the flare-ups from the Lyme infection lasted a long time. In 2016, Lisa’s issues turned into diagnosed Fibromyalgia and Chronic Fatigue Syndrome. Somehow, Lisa did not miss much work in the office. However, I soon noticed Lisa had a few one-off issues starting around 2017, like forgetting words in conversation, misplacing items later found in odd places, working later hours to finish work, and sometimes getting lost while driving. We both knew something wasn’t right.
“Starting in 2017 through 2018, Lisa and I started taking “med-cations” to find the origins of Lisa’s ailments, teaming with multiple healthcare providers and hospitals in the Triangle and Charlotte, Richmond, Virginia, and spent many hours researching potential root causes. We eliminated many issues and believed we were on the right path, figuring the issue must be an inflammation of the brain, possibly caused by an infection from Lymes Disease, Encephalitis or some type of allergic reaction.
“Along the way, Lisa and I considered there may be a connection between Lisa’s ailments and Lyme disease and the possibility that the ailment may be a form of dementia. Several well-known healthcare providers flat out dismissed the possibility that Lisa would have dementia but could not explain the dementia-like symptoms, even after she took several neurological tests in which the results pointed towards dementia. On paper, Lisa’s test results ‘did not fit inside the (medical) box.’ Deeply frustrated with the healthcare system, we set our sights on and arranged neurological appointments with Dr. John Probasco at Johns Hopkins in 2018.
Ahead of the visits to Johns Hopkins, Lisa had a lumbar puncture and brain imaging. Prepping for what the results uncovered and the neurological diagnosis from Johns Hopkins would never be enough to take the sting out of what was an atomic punch in the gut. However, Johns Hopkins’ top-notch professionalism and brutal honesty restored our confidence in the health care system. Dr. John Probasco then referred Lisa to another great doctor, Dr. Richard O’Brien, at Duke Neurology in Durham, North Carolina, just a few miles from home!”
Marc shares how he’s coped with the changes in their lives and relationship since the diagnosis and how they continue to connect as spouses:
“In 2010, Lisa and I were looking to meet someone special who shared the same principles and values. As such, we met through eHarmony, and it worked. Also, we took a class based on the book “The 5 Love Languages” and still live by our foundational skills and love for one another to successfully adapt to new challenges that appear often. Of course, it also helps to proactively meet with speech therapists to learn creative ways to communicate when Lisa cannot find words, watch a good movie together, especially comedies, watch our favorite sports, always listen to music, and enjoy going to a lake or a park and mostly stay grateful that we can continue to share and cherish time together.
“To care for Lisa and maintain our relationship, I try to stay as mentally and physically fit as possible; I attend support groups, check in with a counselor, work out at the gym, and make sure Lisa stays healthy, too. To provide the best for my wife, I resigned from my job to care full-time and hired a great company, CareYaya, with caring and compassionate people part-time to provide extra care support. I always try to ‘meet Lisa where she is’ and provide ‘soft landings’ every day so Lisa can feel loved and be loved. Not everything works, but the need to do your best is the only option.”
He also shares his advice for spouses who become caregivers for spouses with dementia diagnoses and how they can cope with the changes in their lives:
“This is not your 3-minute roller coaster ride. Buckle up. Breathe. It’s going to get tough, and you need to prepare yesterday for challenges that most people on Earth haven’t experienced. The following merely covers some basics:
“Put together a great team of healthcare providers, social workers, and reputable support groups that will be in your corner. Weed out the questionable ones. Write down and ask them lots of questions. Research trusted health sources and read all you can. Knowledge is powerful and overwhelming.
“Also overwhelming is the crazy advice you will be hearing from people. Learn to weed out questionable advice and forgive people who relentlessly try to sell you cures, tell you how you should act, or care for a loved one.
“Know now that some relationships with family, friends, neighbors, and coworkers will change. Learn how to manage disappointments and be grateful for caring and thoughtful people.
“Be sure to follow through with completing legal documents, and pick your POA agents and trustees wisely. Get your financial affairs in order and learn what you can now from your loved one regarding everything from finance to housing and wishes.
“Accept the things you cannot change and accept new support group friends who have gone through this experience and understand exactly what you are going through.
“At some point, you will realize you need help. Currently, we utilize the assistance of a company named CareYaya, which employs incredible college students who aspire to become our future nurses and doctors. They are truly remarkable, caring individuals.
“Make everything fun and easy in increments. Eating will gravitate from using a fork to eating more finger food; watching movies with fewer flashbacks or multiple-layered plots will need to be more common. Concerts and ballgames may become too loud and affect your loved one; maybe switch to intimate venues, light acoustic bands, and little league sports.”
Since the beginning of Lisa’s cognitive decline, Marc began attending various support groups to navigate the changes to her health and their lives and find communities of people who could share similar experiences. He shares how these caregiving support groups helped him and can benefit others in similar situations:
“Even before Lisa’s actual dementia diagnosis, I started to attend a related support group because I did not understand why aspects of Lisa’s cognitive processing were changing. I was getting uneasy and anxious, and I needed to talk with others in the same situation for advice and support to figure out how to best cope with and adjust to Lisa’s illness and its symptoms. An acquaintance with experience with cognitive impairments mentioned a local church with a good support group and staff. I still attend.
“Through research and word of mouth, I found and added a few other groups that support caregivers of persons with dementia. In these support groups, we collaborate, and it works great because we, the caregivers of people with dementia, are the only ones who can understand the specific issues we go through. Such issues include caring for ourselves and our loved ones, venting if needed, and, yes, crying, too. We talk about best financial practices and what the next stage will bring- there is always a next stage, so be nimble and prepare for the next new normal. I am very grateful for their very supportive and experienced caregivers.
“I believe caregiving support groups provide opportunities to share how you feel and what you are going through, listen to how others feel, learn from those who are going through or have gone through the ups and downs of caregiving, and learn from their insightful experiences.”
While Marc attended a local support group for a year or longer to get assistance and share his experience with others, Lisa “was a little upset” because there weren’t any support groups in the area for the challenges she faced. Together, they formulated a model for persons with younger-onset Alzheimer’s support groups for patients and submitted it to the Duke Dementia Family Support Program.
“After Lisa’s diagnosis at Johns Hopkins, we were referred to Duke Health, where we met with a great team of healthcare professionals. During Lisa’s first appointment, Lisa stated that she was upset that there were support groups for caregivers but not any for persons living with Alzheimer’s Dementia. Duke caseworkers immediately worked with Lisa and me to start a younger onset support group. Lisa had previously envisioned and built a successful veterinarian practice from the ground up; now, she envisioned what and how a younger onset support group would look and feel like.
“Lisa and I collaborated, found a venue and facilitators, and decided how the Duke Dementia Family Support Program would run. Day one of the program was in July 2019; it met monthly and eventually twice a month. Due to Covid, the group began meeting on Zoom and is still a success.”
While every day looks different for Marc and Lisa, he shares some of their typical routines and favorite activities:
“Typical days have changed over time and will continue to change. However, foundational needs come first. For Lisa, it’s plenty of fluids, healthy meals and snacks, utilizing mint chocolate chip ice cream to “deflect” out of a bad moment, playing with our dog, Luna, staying clean and healthy, meds, music, coloring, hugs and kisses, and assurances she is loved and cared for. If Lisa is feeling good, she does arts and crafts, watches movies, goes on walks (always with others), engages in conversations, stays positive, and has fun. For me, it’s maintaining my mental and physical health, trying to stay positive, engaging with others, and making sure Lisa is loved and has ‘soft landings’ every day.”