Navigating the complex world of elder care while managing a dementia diagnosis is what Nicole Smith aptly calls "the Wild West of elder care." As someone who found herself suddenly thrust into the role of caregiver for three aging parents—two with dementia—while raising five children, she embodies the challenges of the "sandwich generation." Her experience led her to write "Diagnosis Dementia: Your Guide for Elder Care Planning in Crisis," a resource she created when she couldn't find the comprehensive guide she desperately needed.
The journey of caregiving for someone with dementia requires learning multiple new "languages" simultaneously and under extreme duress. Nicole describes having to quickly master medical terminology, legal concepts, financial planning strategies, and elder care options—all while managing the emotional toll of watching a loved one decline. This overwhelming learning curve is made more difficult by the conflicting and sometimes misleading information available to caregivers, creating a situation where there's both too much and too little helpful guidance.
One of the most challenging aspects of dementia care is the resistance often encountered by the person with dementia. Nicole shared how her mother fought against interventions, including attempts to take away her car keys after her license was revoked. When the family tried to disable the car, her mother reported it stolen to the police. This highlights the delicate balance caregivers must strike between ensuring safety and respecting autonomy and illustrates why first responders would benefit from specialized training in handling situations involving people with dementia.
The importance of proper legal documentation cannot be overstated. Nicole's mother had all her documents in place—powers of attorney, trust, will—which was crucial when she needed to be declared incapacitated. However, even with these documents, it took nine months to get the necessary medical letters to invoke the terms of the trust. In contrast, her father at age 80 had no documents at all, believing that creating a will would hasten his death. This underscores the importance of addressing legal matters before a crisis occurs, as waiting until a crisis hits drastically increases the cost, effort, and anguish involved.
Family dynamics often complicate caregiving responsibilities. Nicole experienced the classic pattern described by her elder law attorney: "One sibling has their hand out, one is checked out, and one's left doing everything—usually the eldest daughter." In her case, she didn't speak to her sister for two years during the crisis, while her brother had moved away and wasn't involved. These strained relationships add another layer of stress to an already difficult situation.
The financial aspects of long-term care present another significant challenge. Medicare doesn't cover long-term care, leaving families to either pay privately (which can be extraordinarily expensive), qualify for Medicaid, or find themselves caught in the "forgotten middle." Nicole was fortunate that her mother's house sold for enough to cover her memory care expenses. However, many families aren't as lucky, which is why consulting with an elder law attorney about asset protection strategies is so important. As Bob Mannor pointed out, there are legal ways to protect assets and still qualify for Medicaid in nearly every state, even in crises.
Perhaps most importantly, Nicole emphasizes the critical need for self-care among caregivers. With the startling statistic that 30% of caregivers die before the person they're caring for, finding support through groups like daughterhood.org, local Area Agencies on Aging, or support groups offered through elder law attorneys becomes essential. Nicole maintains her mental health through daily exercise but encourages everyone to find their own reset button through music, cooking, reading, or other activities.
Listen to this full episode of Advice From Your Advocates, wherever you get your podcasts, or watch the video on YouTube.
About our guest:
Nicole knows firsthand the challenges of balancing caregiving, family life, and finances. As a mother of five and part of the “sandwich generation,” Nicole has been a primary caregiver for her mother with Alzheimer’s, her father, and her stepmother. In her bookDiagnosis Dementia: Your Guide for Eldercare Planning and Crisis Management, Nicole combines personal stories with practical advice to support those navigating eldercare and dementia care.
Nicole’s background in corporate training, her real-life caregiving experience, and her compassionate approach make her a powerful advocate for eldercare planning and support. She now resides in Arizona, a state with rising rates of Alzheimer’s and dementia, where she continues her work to guide families through the complexities of caregiving.
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