Everyone has told me that what they need most is a practical guide about how to find reliable resources and community care partners close to home—especially during times of extreme stress and uncertainty. Families are looking for a strategic “roadmap” to help them navigate through the maze of care options amid a changing environment of in-person and “tele-living” across every sector of society.
The Navigator is intended to do just that—to empower you in deciding how to create an ongoing care plan uniquely suited for your loved ones and you.
Caregivers come from all circumstances and ages – from to spouses caring for their partners; to “sandwich generation” adults taking care of older parents while also caring for their own children; to millennials caring for grandparents; grandparents taking care of grandchildren; and close friends and other family members taking care of loved ones.
Throughout this guide, I try to address a wide spectrum of intergenerational situations. Many families across Long Island’s increasingly diverse communities also need caregiving solutions that respect their distinctive cultural traditions.
I realize that many families in today’s fast-paced society are not likely to plan ahead much for elder caregiving. They will find themselves thrown into care, scrambling to devise strategies to meet unforeseen crises. Nevertheless, I have intentionally chosen to create a comprehensive planning guide. I believe this approach gives families the best opportunity to prepare for challenges across the stages of caregiving—some of them expected, others sudden—no matter whether they are in life’s journey.
Too often, caregiving has become a solitary endeavor. But you are not alone. There are many available resources: health and social service professionals, senior advisors, legal and financial experts, government agencies and nonprofits—not to mention other family members, friends, colleagues. Family caregivers need support from every sector of society who can guide them along the way.
The Navigator is organized into six chapters:
1. Preparing a Plan. Planning conversations with your spouse, children, and other loved ones, reviewing benefits, insurance coverage, financial resources, and legal documents.
2. Aging in Place—Safely and Independently. Preparing the home for successful “aging in place,” including home modifications for safety and comfort, for as long as desired and practical.
3. Living at Home with Some Assistance. Explaining home care options, government benefits, assistive devices, adult day care, and geriatric care management.
4. Long-term Care Options and Services. Making choices about when to provide higher levels of care at home or seek supportive long-term care in the community.
5. The End-of-Life Journey. Preparation for the end-of-life journey, including legacy planning, palliative and hospice care, doula services, and funeral arrangements.
6. Caring for Yourself, the Caregiver. Taking care of yourself, alleviating stress, and finding support groups, programs, and practices to help you through loss after your loved one passes.
Yes, it’s a lot to absorb. The first section alone, “Preparing a Plan,” is pretty massive. Not to worry. Feel free to jump anywhere into the Navigator that seems most pertinent to your current condition. As sailors know, you have to tack, depending on the winds, to achieve your destination. But as you begin your caregiving journey, I suggest that you take a quick look at Chapter 6, “Caring for Yourself, the Caregiver”—and then read it again, from time to time, to remind yourself that self-care is a pre-requisite to meeting each challenge you face.
Throughout this guide, I have included checklists of questions and useful tips for you to consider as you move from one phase of caregiving to the next. I have also added a list of resources by subject area in. Don’t feel compelled to investigate every one of them. Start with one, then see whether it answers your needs.
At the end of each section is you are urged to take notes on people to confer with, questions to pursue, and/or forms to complete. Throughout, there are links to definitions of key terms to help you decipher the exploding jargon of the health care sector. Plus, Resource listings of local non-profit service organizations and government offices serving the aging.
Please feel free to download content, checklists, and resources and receive the latest updates about caregiving resources or exchange ideas, stories, and questions with other caregivers on our Forum page.
Throughout the Navigator, I’ve shared short personal stories, gleaned from my family’s recollections of our long saga in caring for our Mom, as well as observations from notable experts in various fields. I hope these accounts offer useful examples of real-life situations and spur your own conversations about how we can come together to provide the best care for our loved ones.
And from the beginning, caregivers must focus on self-care, caring for yourself so you can best care for others.
Continuing Questions Over Public Health Challenges
One of the biggest concerns affecting family caregivers has been the uncertainty over public health threats, from lingering COVID-19 variants to annual outbreaks of flu or bacterial infections.
Health officials are still closely monitoring weekly changes in health data. While the federal Public Health Emergency for the pandemic has ended, COVID is considered a “Public Health Priority.” The coronavirus remains one of the leading causes of death in the U. S. and it poses a particular threat to older adults, who have the highest risk of severe cases. As we move forward, there may be a new round of vaccine, treatments and adjustments in federal and state health protocols.
When considering various resources in the Navigator, make sure you review the latest guidelines provided by the federal Centers for Disease Control and Prevention and the New York State Department of Health. Also check the status of programs and services offered by individual agencies, companies and health care professionals to determine what practices are in place. Ask detailed questions:
- Are individual providers offering both face-to-face meetings and virtual consultations?
- What are the current safety protocols for staff and residents of assisted living communities and skilled nursing facilities?
- What are the current practices regarding home care agencies and adult day programs?
- How are facilities and programs handling visits from family and outside service providers?
- What happens if a staff member, facility resident or program participant does test positive for COVID-19 or other illnesses?
Most health care professionals and managers closely monitor the safety of their staff and clientele, but as we continue to navigate unexpected changes in services these days, it’s always better to “know before you go.”