In a country where more than 50 million Americans quietly take on the role of family caregivers, November has commemorated National Family Caregivers Month for more than 25 years. While the term “family caregivers” may seem a bit unclear, their work is just the opposite as these heroes labor behind the scenes, offering unpaid care to the most vulnerable people in their lives.
What is astonishing about family caregivers is their ubiquity – they represent a substantial portion of the population yet remain hidden in plain sight not only to the people around them but sometimes even to themselves. Most never think the term “family caregiver” applies to them; they are simply being a parent, daughter, son, niece or nephew. But they do all count in this category as noted by President Biden who, in last year’s proclamation, extended the recognition to mention not only caregivers of aging parents, but also caregivers of children, siblings, and other loved ones.
Anyone who has been – or is – a family caregiver knows that this ordinary role carries extraordinary weight and yet, caregivers rarely receive support or recognition. That needs to change. Being a caregiver has incredible highs and equally incredible lows but ask anyone in this role and they will undoubtedly say that it is both the hardest and the best thing they have ever done. As we kick-off National Family Caregivers Month, we thought it was high time they were properly celebrated. Their stories, in their own words.
The yin and yang of caregiving
Jan Stewart is a mother of two neurodivergent children and caregiver to her 36 year old son, Andrew who has cognitive limitations from autism, Tourette Syndrome, Obsessive Compulsive Disorder, ADHD and learning disabilities, and cannot responsibly care for himself. She says that his life has been an emotional, non-stop roller coaster and candidly shared that being a caregiver can sometimes feel unrelenting, with no end in sight.
Jan is not alone. More than half (56%) of caregivers report that the role makes it difficult for them to care for their own mental health, with 20% of employed female caregivers aged 50+ reporting symptoms of depression compared to 8% of their non-caregiving peers.
Caregiving can also present new tests of mental and emotional strength. For the past five years, Amber Dixon has cared for her aging father who has Alzheimer’s. “Balancing my responsibilities as a caregiver with my job has been challenging,” she said. “It has impacted me physically due to the lack of sleep and emotionally because of the constant worry about my father’s health.”
But the toughest moments are often the ones that spark even deeper commitment. Amber shared a difficult time when her father momentarily forgot who she was. “It was a challenging time emotionally, but it also reinforced my resolve to provide him with the best care possible,” she said.
Jan echoed that sentiment, explaining that being a caregiver also drives her. “It has such a meaningful purpose, giving me the raison d’etre to help others, battle stigma and discrimination, and give vulnerable children a voice,” she said.
She has taken her time as a caregiver and translated it into mental health and neurodiversity advocacy work by sitting on numerous Board and Advisory Councils in both Canada and the US. Through this work, she hopes to help other caregivers looking for guidance during their caregiving experience.
“I vividly remember being in their shoes: frightened, frozen, not knowing where to turn or how, and feeling isolated and alone,” Jan said. “There have been times when I have been so exhausted and drained that I have lacked the emotional reserves and energy to devote to advocacy, but once that lifts, I have made it my mission to inspire and empower caregivers to persevere through the most difficult of times, have hope and know they are not alone.”
Caregivers don’t work for accolades, but a little acknowledgement goes a long way. This is particularly true for mothers who still shoulder the majority of caregiving responsibilities in America. Consider Dr. Kristal Lau who juggles her postpartum and maternal wellness practice while being the primary caregiver for her two daughters since her husband serves in the military. She sometimes struggles to feel valued for her domestic and emotional labor.
“There’s no award or praise for the work I do. No proactive initiative to take the mental and physical load off of me even when it’s clear I’m drowning,” says Kristal. “And when my children do things that are amazing, thoughtful, and skillful, there’s almost zero praise for me that I taught them well…as though they magically obtained those skills and behaviors at a tender toddler age.”
But she aims to change that. She notes that companies celebrate their top performers and the military does as well. Moms deserve nothing less.
“I’ve stopped buying into the harmful narrative of how women family caregivers need to ‘just suck it up’ and how we don’t deserve praise because ‘it’s your job,’” she explains. “I’ve started praising all my friends who are mothers…and any other mothers I have the honor of meeting through my business or volunteering in our military community.”
The cost of unpaid caregiving
Caregiving is often a financial strain as well. Family caregivers, who are usually unpaid for their work, often have to dig into their own pockets to cover expenses, on average spending 26% of their income on caregiving activities. Some are even forced to reduce their working hours or leave their jobs altogether if they don’t have ample support from their employer.
This was the harsh reality for Marlinda Cesar-Wiley, who had no choice but to leave her career to fully prioritize caring for her autistic, nonverbal, and epileptic 4-year-old son. “The difficulties of working while caring for my kid were stressful,” she explained. “The decision has had an emotional and financial impact on our family, but my son’s well-being remains my first priority.”
Just as we can all do more to celebrate the caregivers in our lives, employers have to step up and support the working caregivers on their teams. Last year, the Harvard Business Review reported that caregivers – including parents, those caring for elderly family members, and those supporting a sick or disabled child, sibling, or spouse – constitute the fastest growing workplace identity group accounting for 73% of the workforce. The absence of adequate care support also diminishes productivity by one-third on average—or an estimated $5600 per employee when annualized across all employed caregivers.
But the tide might be turning there. In our 2023 Future of Benefits Report, nearly half of employers (46%) placed a higher priority on childcare support in 2023 and nearly that many (43%) recognized senior care as well. Through the pandemic, an incredible amount of attention was rightfully placed on supporting working parents through childcare benefits, but that has now expanded to encompass all caregivers.
A labor of love
Alongside the emotional, physical and financial challenges, caregiving also has moments that are unique and powerful, and unforgettable. Asad Afzal has been a caregiver for both his aging parents for six years and says the most rewarding aspect is the profound connection he and his parents have developed, moments he describes as priceless.
“One of the most impactful moments was when my mother, who has Alzheimer’s, recognized me as her son and called me by my childhood nickname,” he recalls. “It was a touching instance that reminded me of the power of love and connection, even in the face of such a challenging condition.”
Amber shared a similar sentiment. “The most rewarding part of being a caregiver is the quality time I get to spend with my father. Our bond has deepened through this journey,” she said. “One beautiful moment that comes to mind is when we spent an afternoon reminiscing over old family albums, and despite his condition, my father remembered precious family moments.”
We didn’t have to go far to find these stories and I suspect you won’t either. Take a look around you. Or perhaps just look in the mirror. Caregivers may feel invisible, but once you look closely, they are hard to miss. You will recognize them because of their limitless capacity to love, their tireless patience, and their extraordinary ability to put someone else’s needs ahead of their own. In the spirit of National Family Caregivers Month, let’s collectively put the caregivers in our lives first for a change. Say thank you. Show your appreciation. And let them know that your world is a bit brighter because they are in it.