The Long View: Joy Loverde - Planning Ahead for Care Needs as You Get Older

Key Concepts

Elder Care Planning: Proactive strategies and tools for managing aging and care needs.
Family Caregiving: The role of family members in providing care for aging relatives, and the evolving conversation around who will provide care for caregivers themselves.
Time Travel (Aging Context): A method of understanding future aging by observing and communicating with individuals significantly older.
Aging in Place: The desire and ability to remain in one's own home as one ages.
Continuing Care Retirement Communities (CCRCs) / Life Plan Communities: Residential options offering a spectrum of care and services for seniors.
Naturally Occurring Retirement Communities (NORCs): Neighborhoods or buildings where a significant portion of residents are older adults, fostering informal support networks.
Soloagers: Individuals aging alone without a spouse or close family.
Alzheimer's Provision: A legal addendum to a living will specifying wishes for care in the event of an Alzheimer's diagnosis.
Hospice Care: Specialized care for individuals approaching the end of life.
Death Doula: A non-medical professional who provides emotional and practical support to the dying and their families.
Technology in Aging: The role of advancements like AI, robotics, and smart devices in supporting older adults.

Background and Motivation for Elder Care Advocacy

Joy Levere's extensive experience in elder care stems from a lifelong role as a family caregiver for parents and friends, coupled with over 45 years of engaging with family caregivers through workshops and speaking engagements. A recurring theme she observes is the evolving question from caregivers: "Who will take care of me when I'm old?" This sentiment highlights a shift from solely focusing on caring for others to considering one's own future care needs.

Levere's pivot from a 20-year career in advertising in Chicago to elder care advocacy was catalyzed by a profound experience in high school. A Thanksgiving volunteer visit to a nursing home in the late 1960s left her questioning the absence of families and compelled her to explore the topic further. By her early 40s, while working at J. Walter Thompson, she recognized the need for better communication systems within families regarding elder care. This led to the creation of "The Complete Elder Care Planner," first published in 1993, with the aim of facilitating family discussions.

The impetus for her second book, "Who Will Take Care of Me When I'm Old" (published in 2017), arose from repeated questions from family caregivers attending her programs: "I'm doing this for my parents and grandparents, but who will do this for me?" This underscored the growing demographic of individuals living alone who would require assistance as they aged.

Planning for Aging Successfully: Vision and "Time Travel"

Levere advocates for a proactive approach to aging, suggesting the creation of a "vision board" for successful aging. This involves visualizing one's future self and identifying desirable traits and qualities to maintain throughout life. This process, she argues, helps to reframe aging from a potentially "sad and depressing topic" to a more positive and aspirational one, counteracting prevalent negative myths perpetuated by advertising and media.

A key methodology she introduces is "time travel," which involves actively engaging with individuals who are 20-30 years older. By approaching them in social settings and inquiring about their current happiness and any regrets about their aging journey, one can gain valuable insights into what aging successfully looks like and what to potentially avoid. This process exposes individuals to a spectrum of aging experiences, from those struggling to those thriving and actively pursuing life (e.g., running marathons, working late into life). This direct observation is crucial for realistic future planning.

Health Crises and the Urgency of Planning

The conversation emphasizes the critical importance of advance planning, particularly in the face of unexpected health issues. Levere recounts a friend's diagnosis with early-onset Parkinson's, highlighting that once a chronic diagnosis like Alzheimer's or Parkinson's occurs, it may be "too late to have exactly what you want" if no plans are in place. The financial implications of such diseases are often underestimated, capable of "wrecking havoc on our financial stability."

The core argument is that planning should not be reactive. It necessitates having legal documents in order and financial affairs settled well in advance. The common sentiment of "I never thought it would happen to me" often leaves individuals "behind the eightball," struggling with both financial and caregiving arrangements.

The Caregiving Journey: Emotional and Practical Challenges

Levere's personal caregiving experiences, rooted in her Italian heritage where intergenerational living and caregiving are common, provided her with numerous role models. She notes the contrast with the American societal norm, where such close-knit family structures are less prevalent. This observation fueled her desire to encourage family communication and connection.

She acknowledges the complex emotional landscape of caregiving, where feelings of love can coexist with anger, frustration, and stress. To navigate these emotions, Levere stresses the necessity of a "safe place to go to to talk and to express their honest feelings." Therapy is presented as a vital tool for maintaining relationships and communication lines, which can become fractured during the highly emotional caregiving process. Support from non-judgmental friends is also crucial.

Setting Boundaries for Caregivers

To prevent burnout and ensure caregiving doesn't "completely subsume your life," Levere emphasizes the importance of setting boundaries through clear communication. This involves expressing one's own needs and offering choices rather than direct demands. For example, when asking siblings for help with a parent's doctor's appointment, one might ask, "Which day are you available?" instead of "Will you take him?" Similarly, when asked for a favor, a caregiver might respond, "I'm sorry, I can't, but maybe [sibling names] can help you." This approach requires bravery and a willingness to communicate needs clearly, despite potential fears of repercussions.

Navigating Sibling Dynamics in Caregiving

Levere addresses the common challenge of siblings not being on the same page regarding caregiving responsibilities. This can manifest as denial of a parent's needs or the assumption that one sibling (often the daughter) will handle everything. Her recommended solution is to hold "family meetings" where all issues are discussed openly, with established rules to prevent personal attacks. Crucially, parents are not invited to these meetings.

She also touches upon the gendered aspect of caregiving, acknowledging the historical assumption that women are primary caregivers. Levere advocates for women to assert themselves as equal partners and encourages male adult children to participate, highlighting the rewarding nature of these relationships.

Housing Options for Aging

Housing is identified as a primary concern for aging individuals. Levere discusses:

Continuing Care Retirement Communities (CCRCs), now often called Life Plan Communities: These offer a continuum of care, allowing residents to live independently while having access to services and support as their needs change. The emphasis is on fostering relationships and providing a reliable support system.
Aging in Place: While desirable, this option presents challenges, especially for those living alone in isolated neighborhoods. Success requires forging relationships, having financial resources for services, and designating individuals to manage care. Technology plays a role, but its reliability and management are concerns. Nutrition and exercise are also critical components for maintaining health while aging in place. Levere notes that aging in place has a "shelf life" and can become difficult over time.
Assisted Living Facilities: Levere acknowledges that while some facilities can be disempowering due to constant exposure to "despair, disease, dementia, dying, and death," excellent communities exist. These offer therapists, spiritual programs, and a supportive family environment. Thorough research and a "gut feeling" are essential when selecting a facility. She also notes that families may visit less when residents are in assisted living, underscoring the need for individuals to cultivate their own support networks.
Naturally Occurring Retirement Communities (NORCs): Levere is a strong proponent of NORCs, which are not formally designated but evolve organically in neighborhoods or buildings where a significant number of older adults reside. These foster informal support networks, as seen in her own high-rise building in Chicago, where residents of all ages contribute to a supportive community.
Village to Village Network and Creative Housing Solutions: Levere mentions less traditional options like the "Village to Village" network and a company in Scottsdale, Arizona, that helps groups of friends establish their own assisted living communities by purchasing a shared home. While creative, she cautions that even these structured arrangements can face challenges as individuals age and health needs change.

Soloagers and Essential Preparations

For the approximately one-third of Americans aged 45-63 who are aging alone, Levere outlines three critical steps in order of priority:

Financial Security: Consulting financial planners and wealth managers to ensure sufficient funds, as soloagers will heavily rely on professional services.
Housing: Relocating to a community setting, as previously discussed.
Legal Documents: Ensuring power of attorney for healthcare and finances, and living wills are in order.

Alzheimer's Provision in Living Wills

Levere strongly recommends adding an "Alzheimer's provision" to living wills. This is crucial because once diagnosed with Alzheimer's, an individual loses the capacity to make legal decisions. This provision allows for pre-determined wishes regarding living arrangements, financial management, and the use of neighborhood support organizations to be documented in writing.

End-of-Life Care: Hospice and Death Doulas

Levere distinguishes between "bad hospice" (lacking support or unfamiliar with the dying process) and "good hospice." She advises seeking referrals from doctors or hospitals and vetting at least three hospice organizations. Key questions to ask include whether medical equipment like hospital beds and medications are provided, the frequency of visits, and the protocol for end-of-life transitions. She emphasizes the importance of interviewing providers and trusting one's "gut feeling," alongside checking references and Medicare coverage.

The role of a "death doula" is also highlighted. Similar to birth doulas, death doulas provide emotional and practical support to the dying and their families, acting as a point person and offering recommendations to enhance dignity and respect during the dying process. While not covered by Medicare, they are considered invaluable.

Candid Conversations About Death

Levere advocates for open discussions about death, citing a cultural tendency to "hide death around a dark corner." She believes that involving children in conversations about death and allowing them to attend funerals or wakes is beneficial, especially in an era of increased longevity where multi-generational relationships are common. Avoiding these conversations can be a "big mistake."

Technology and Aging

While acknowledging advancements in technology like AI-powered robotic companions and robotic walkers, Levere expresses a degree of skepticism about widespread adoption. She suggests starting with simpler technologies like smartphones and iPads, which offer life-saving apps and tracking systems. She is not a proponent of technology "taking over caregiving" but sees it as a supplementary tool. She also notes the potential for intergenerational connection through technology, with grandchildren helping older relatives navigate new devices. However, she stresses that technology is "no replacement for people actually being in person."

Resources for Aging and Caregiving

Levere recommends "My Mother's Money" by Beth Pinsker, a financial columnist, as a practical and emotionally resonant guide to caregiving and managing finances for parents. She also values movies that realistically depict sibling arguments and negotiations around aging parents, as these can help viewers understand the complexities and feel less alone.

For individuals feeling overwhelmed by planning, Levere suggests a "one thing at a time" approach. This involves opening a table of contents, choosing one chapter or task that resonates in the moment, completing it, and then putting the material away. Building momentum through small wins and potentially collaborating with friends can make the process more manageable.

Chicago-Specific Insights

Levere shares her passion for Chicago, mentioning her love for the Cubs and getting married at Wrigley Field. She highlights the city's vibrant offerings, including kayaking on the Chicago River and exploring neighborhoods. She also points to the valuable resources available through Chicago's Area Agency on Aging, located at the Renaissance Center, which offers numerous programs and 12 fitness centers for seniors.

Conclusion and Key Takeaways

Joy Levere's insights underscore the critical need for proactive and comprehensive planning for aging. This involves not only addressing practical concerns like finances, housing, and legal matters but also embracing the emotional and relational aspects of caregiving and aging. Her work emphasizes the importance of open communication, setting boundaries, building support networks, and confronting the realities of aging and death with honesty and courage. The evolving landscape of family structures and the increasing number of soloagers necessitate a deliberate and informed approach to ensuring a dignified and fulfilling later life.