The Long Haul: The Impact of Long-Term Dementia Caregiving
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In this deeply personal and informative episode, hosts Marianne and Christy are joined by panelists Jean Lee, Ann Campanella, Loretta Woodward Veney, and David Iverson, all caregivers for ten or more years, as they explore the five pillars of caregiving – emotional toll, physical strain, financial difficulties, social isolation, and coping strategies.
Key Themes & Takeaways:
Emotional Toll: Caregivers shared moving personal stories of grief, guilt, and anger while navigating their loved ones’ dementia journeys. There is strength in allowing yourself to grieve, as highlighted by Ann Campanella, who stated, “Grieving clears the way to bring in joy and beauty.”
Physical Strain: From exhaustion to disruption of sleep cycles, the taxing demands of caregiving impact physical health drastically. David emphasized practicing self-care through exercise and staying physically active as a necessary coping mechanism.
Financial Difficulties: A significant challenge highlighted was the cost of care, with inputs from Jean, Loretta, and Dave emphasizing the overwhelming need for better elder care policies. Loretta noted how caregivers should proactively explore local programs like Medicaid waiver lists early on for financial support.
Social Isolation: Many caregivers expressed feeling isolated, especially given the stigma surrounding dementia diagnoses. Loretta found joy in keeping her mother socially active, even organizing creative activities like Lego building to keep her mother engaged.
Strategies for Coping: Incorporating joy into daily routines was a recurring theme, especially for Loretta, who promised her mom “a little bit of joy every day.” The authors shared reminders to stay connected with loved ones and leverage support groups for affirming connections and shared experiences.
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