“There are only four kinds of people in the world:
Those who have been caregivers;
those who currently are caregivers;
those who will be caregivers;
and those who will need caregivers.”
—Rosalyn Carter, former First Lady of the United States and
President of the Board of Trustees, Rosalyn Carter Institute for Caregiving
Caring for your aging parent is one of the most loving gifts you can give—and perhaps one of the most difficult jobs you’ll ever have.
From first-hand experience.
I’m one of hundreds of thousands of Long Islanders in recent years who have taken on the tasks of caring or finding care for an older relative or friend.
My three brothers and I took care of our mom, a brave and remarkable woman who successfully aged in place before eventually succumbing to Alzheimer’s.
We went through practically every phase of caregiving: helping our mother stay safe and independent for as long as possible; then managing the complex process of long-term care legal and financial planning, overseeing a wide variety of services as Mom became increasingly frail, from choosing home care aides and adult day care programs, to overseeing doctors’ visits, wound care and sub-acute rehabilitation services, physical therapy and other in-home health-care providers; and finally, engaging hospice care.
Every family’s caregiving journey is different—but practically everyone can tell you their saga of challenges and crises. Many adult children are wedged in the “sandwich generation”—holding down jobs while trying to manage the care of both elderly parents and their own children. They’ve told me that what they need most is a practical guide about what reliable resources are available to help them, especially during times of extreme stress and uncertainty. They need a strategic “roadmap” to help them navigate through the maze of care options.
This guide is intended to do just that—to empower you, the family member, in deciding how best to care for your loved ones. Long Islanders deserve up-to-date information about resources across the nation, but especially those close to home. This guide is organized in five parts to help you focus on the most critical issues at each stage of caregiving:
1. Preparing for care. Planning family conversations, reviewing benefits, insurance coverage, financial resources and legal documents.
2. Supporting those who are largely independent. Preparing the home for successful “aging in place,” including home modifications for safety and comfort.
3. Providing care for those able to live at home, with assistance. Explaining options, government benefits, levels of service, assistive devices and case management.
4. Providing care for outside the home. Making long-term care choices when it’s no longer feasible for loved ones to remain at home.
5. Caring for the caregiver. How to take care of yourself, alleviate stress and find support groups and programs.