We asked Barry J. Jacobs, a clinical psychologist and family therapist who has also been a family caregiver, what challenges family caregivers these days. Mr. Jacobs is also the author of “The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent” and a contributor to AARP.
Q: What are the top 3 challenges facing family caregivers today?
A: Today’s family caregivers face many challenges—for instance, coping with stress, depression and anxiety; feeling helpless and guilty when they observe but can’t relieve their loved ones’ confusion and suffering; and battling to convince other family members to step up and assist with caregiving tasks. But here are my top three:
- Family caregivers struggle oftentimes to navigate our fragmented, inefficient and dizzying complex systems of care
- They feel pulled in too many different directions by trying to juggle the responsibilities of work and caregiving and then beat themselves up for not performing their best at any one task
- They sometimes feel too guilty and stubborn to accept help from others
Why are these challenges today?
- Twenty-five years ago, there was little public recognition of the work of family caregivers and few services to support them. Since then, many Americans have been or known family caregivers and the number and types of support services have mushroomed. Today’s caregivers can receive resources and emotional support from local Area Agencies on Aging; disease-specific organizations, such as the Alzheimer’s Association and National Parkinson’s Foundation; local churches, mosques and synagogues and other community organizations; hundreds of books, websites, Facebook pages, blogs and apps; health care systems’ and agencies’ social workers and care managers; and, most recently, insurance companies’ care managers. The problem: None of these helpers are in communication with one another to coordinate their efforts. Like the medical patient who has received multiple and divergent diagnoses from multiple physicians, family caregivers can get buried in conflicting advice and not know whom to trust for the right guidance.
- More big companies are recognizing that many of their employees are also stressed caregivers. They try to retain these workers by supporting them with paid time off and flexible scheduling. However, these are the exceptions to the rule. Smaller companies still show little sensitivity or understanding toward the needs of their caregiving workers. Nowadays, more caregivers than ever feel whipsawed between taking care of business and taking care of loved ones. Some ultimately quit their jobs at the expense of their own pocketbooks and their employers’ bottom-lines.
- The greater availability of caregiver supports hasn’t made it any easier for some family caregivers to accept services. Many still feel too ashamed or guilty to use home health aides or adult daycare programs as if doing so is tantamount to shirking their duties and admitting they are weak or unfit relatives.
What suggestions/tips/advice can you give people who are experiencing these challenges so that they can overcome them?
- To find the right guidance, I suggest three steps:
- Make yourself an informed consumer by reading about your loved one’s medical illness or disability on professional organizations’ websites (not Facebook pages) to understand the likely trajectory of the condition and the type of help that will be required over time.
- If your loved one is over 60, go to www.eldercare.gov to find your local Area Agency on Aging and then confer with a care manager there about available support services in your area.
- Either allow that care manager to guide you or speak with your loved one’s health care provider about the right services to reach out for now.
- Let your employer know about your personal situation. Ask specifically about your company’s policies regarding paid and unpaid family leave and flex time. Band together with co-workers who have similar family caregiving responsibilities. Put your employer on notice as a group that supporting you in your family caregiver roles will make you more loyal employees. But also make clear that neglecting to help you balance work and family will undermine your company allegiance.
- The most successful family caregivers are resourceful, flexible and strategic. Accepting help to provide care more effectively is no more shameful that using tools to build a sturdier house. Refusing help is putting pride over practicality. Caregivers will consequently suffer when the caregiving becomes more difficult and they feel burnt out. Their loved ones will suffer more, too.