Two years ago, Allison Pearson and her husband Scott were charting a course toward their retirement dreams: a tapestry woven with threads of travel, volunteerism, lifelong learning, and cherished time with family and friends. However, this envisioned future was abruptly and irrevocably altered by a diagnosis that reshaped their reality: Scott was diagnosed with early-onset frontotemporal dementia (FTD).
Since his 2018 diagnosis, Scott’s life has undergone a profound transformation. Once the proprietor of his own thriving business, he is now unable to work. His cognitive and functional abilities have significantly declined, manifesting as difficulties in following conversations, a persistent forgetfulness of the day of the week, and the inability to drive. "Every now and again he’s still the man I married," Allison Pearson shared, her voice tinged with a profound blend of love and sorrow, "but most of the time he’s like a happy four-year-old boy." The trajectory of FTD indicates that full-time care will soon become a necessity.
Pearson acknowledges the immense challenges and emotional toll of their situation. "I’ll be honest," she stated, her candor underscoring the gravity of their circumstances, "A lot of things now are impossibly hard, and I spend many sleepless nights worrying about what lies ahead. But I’m not sharing this to complain. I’m sharing because I’ve learned a lot of valuable lessons along the way, lessons I believe can help others face unexpected challenges that occur as we near and enter into retirement."
The Pearsons’ experience, while deeply personal, reflects a growing national concern. According to AARP, an estimated 40 million Americans currently serve as unpaid caregivers, a figure projected to rise significantly. The U.S. population aged 65 and older is expected to nearly double over the next generation, amplifying the demand for caregiving services and placing an increased burden on families. For many, like the Pearsons, this reality necessitates substantial adjustments, often derailing long-held retirement aspirations.
The Unforeseen Arrival of Reality: Physical, Emotional, and Financial Ramifications
The pivot in the Pearsons’ life story began approximately three years prior to Scott’s diagnosis. They had just made the decision to relocate from Denver, Colorado, to Nashville, Tennessee, for Allison’s career advancement. It was amidst this period of transition and forward planning that Scott received his FTD diagnosis.
The news was devastating, yet for Allison, it was not entirely unexpected. "Over the past several years, I’d seen signs that something was amiss," Pearson recounted. "At first, I didn’t take them seriously, but then our adult kids began noticing that their dad didn’t seem ‘quite right.’” These subtle, then increasingly apparent, shifts in Scott’s behavior and cognitive function were early indicators of the underlying neurodegenerative disease.
Following the diagnosis, Pearson experienced an initial period of panic. However, she quickly mobilized, dedicating herself to acquiring comprehensive knowledge about FTD and its likely progression. "I was lucky to find a frontotemporal dementia support group, something I desperately needed, and now attend monthly meetings," she explained. Simultaneously, the practicalities of their planned move remained. "I also started house hunting in Nashville. Scott and I had already discussed downsizing before his diagnosis so settling on a smaller house was easy.”
Yet, the ease of that decision was an anomaly in a landscape now dominated by uncertainty. Pearson articulated the pervasive anxieties that accompanied this new reality: "I worried 24/7 about a long list of things. What impact would Scott’s diagnosis have on our family? How long could Scott be left alone at home while I was at work? Could I work full time and still have the energy to care for Scott? What will happen when Scott needs full-time care? Who will provide it? How will I pay for it? Will I ever be able to retire?” These questions, laden with profound implications for their financial security, emotional well-being, and future independence, remained largely unanswered as they navigated the immediate aftermath of the diagnosis.
While Pearson admits she cannot yet provide definitive answers to all these pressing questions, she has distilled her experiences into five critical lessons that offer valuable guidance for others facing similar uncertainties.
Navigating the Uncharted Waters: Five Essential Lessons for Retirement Planning and Caregiving
Lesson No. 1: Secure Financial and Legal Affairs — Urgently.
Like many couples, the Pearsons had operated under the assumption of continued good health well into their retirement years. This assumption led them to defer crucial decisions, including the procurement of long-term care insurance. "We can’t change that," Pearson stated with resignation, "But if you’ve put off purchasing insurance or making other important financial decisions, now’s the time to start.” The financial implications of long-term care can be staggering. The median annual cost of a private room in a nursing home in the U.S. in 2023 was $108,410, according to Genworth’s Cost of Care Survey, a figure that can quickly deplete savings without adequate planning. Proactive financial planning, including exploring insurance options, creating robust emergency funds, and understanding potential government benefits, is paramount.
Lesson No. 2: Engage Professional Expertise.
The Pearsons had previously established Power of Attorney (POA) documents for each other when they resided in Denver. However, upon consulting an eldercare lawyer in Nashville, they discovered a critical legal oversight: their Colorado POAs were not legally recognized in Tennessee. "We needed new ones ASAP, while Scott was still of sound mind," Pearson emphasized. This urgent legal restructuring, coupled with transferring assets into Allison’s name to facilitate decision-making without Scott’s immediate consent, incurred a cost of nearly $10,000. Pearson views this expenditure as a prudent investment in safeguarding herself, Scott, their children, and their collective assets. The complexity of legal and financial planning for long-term care and incapacitation underscores the importance of consulting with qualified professionals, such as elder law attorneys and financial advisors specializing in retirement and estate planning.
Lesson No. 3: Embrace Opportunities While They Are Available.
Three years prior to Scott’s diagnosis, the Pearsons embarked on a significant family trip to Germany to commemorate their 25th wedding anniversary. This journey, though challenging in retrospect given Scott’s current condition, remains a source of profound gratitude for Allison. "Although the trip was difficult, I’m so thankful we did it then as Scott can no longer travel," she shared. The ability to travel, engage in hobbies, and spend quality time with loved ones is often curtailed by the progression of dementia. For Allison, even solo travel has become complex, necessitating the arrangement and expense of respite care for Scott at approximately $200 per day, as he can no longer be left unsupervised. This lesson highlights the value of seizing cherished experiences and fulfilling personal aspirations before health limitations may impose restrictions.
Lesson No. 4: Cultivate a Forward-Looking Perspective.
While Allison Pearson admits to moments of regret regarding the absence of long-term care insurance from their earlier financial planning, she consciously chooses to direct her energy toward the present and future. "It’s not the life we once envisioned, but I intend to remain strong for Scott and create the best possible future for the two of us, while also making sure I take care of myself," Pearson stated. This philosophy of focusing on what can be controlled and adapted, rather than dwelling on unchangeable past decisions, is crucial for resilience. The implications of this mindset extend beyond personal coping; it allows for proactive problem-solving and the development of new strategies to navigate evolving circumstances.
Lesson No. 5: Actively Seek and Accept Support.
Pearson draws a parallel between the adage "it takes a village to raise a child" and the support network required to care for a loved one with dementia. "It takes a village to care for a loved one with dementia, so don’t go it alone," she advises. This includes reaching out to family, friends, and colleagues for assistance, joining caregiver support groups, and enrolling in online caregiving courses. Furthermore, she emphasizes leveraging free resources provided by organizations like AARP Family Caregiving and the Alzheimer’s Association. Crucially, Pearson advocates for inviting family and friends into their experience. "Doing so helps them better understand what you’re going through and gives them valuable insights into how best they can support you," she explained. This open communication fosters a stronger support system and alleviates the isolation often experienced by caregivers.
The Pearsons’ journey underscores a fundamental truth: the transition into retirement is not always a predictable or smooth passage. Unexpected health challenges, economic shifts, or personal circumstances can necessitate significant course corrections. By embracing proactive planning, seeking expert guidance, cherishing present moments, adopting a resilient outlook, and building a robust support network, individuals can better navigate these inevitable adjustments and strive to create the most fulfilling future possible, even in the face of adversity.
Bev Bachel, the author of this piece, is a freelance writer based in the Twin Cities. Her early career experience included working in a nursing home, where she provided care for patients with dementia, offering her a unique perspective on the long-term implications of such diagnoses. The Retirement Wisdom Blog, where this article was originally published, has been recognized by Blog Overview as one of the best blogs to read in 2021.
